Government Gazette Vol 2; 2017
Finding answers to today’s mass migration
Policymakers and experts present a plan to solve Europe’s migration crisis
The policy pill to end Alzheimer’s
Five European ministers offer strategies to improve treatment and care across EU
The European security chief writes about the EU-wide fight against online radicalisation
border control mobility online gambling energy security sustainability colorectal cancer diabetes lifestyle Supplement on Performance
£10.00, €11.00 ISSN 2042-4168
Government Gazette Vol 2; 2017 Managing Editor Jonathan Lloyd firstname.lastname@example.org (+44) 020 3137 8612 Commissioning Editor Janani Krishnaswamy email@example.com (+44) 020 3137 8653 Editor, Performance Supplement Meliissa Gokhool firstname.lastname@example.org Publisher Matt Gokhool email@example.com (+44) 020 3137 8611 Advertising and sponsorship sales firstname.lastname@example.org (+44) 020 3137 8653 © 2017 CPS Printed by The Magazine Printing Company plc, Mollison Avenue, Brimsdown, Enfield, Middlesex, EN3 7NT. The acceptance of advertising does not necessarily indicate endorsement. Photographs and other material sent for publication are submitted at the owner’s risk. The Government Gazette does not accept responsibility for any material lost or damaged.
06 EU COMMISSIONER JULIAN KING ON TACKLING RADICALISATION
22 ONLINE GAMBLING
Charles Tannock MEP writes why Britain’s security will suffer after leaving the EU
Christofer Fjellner MEP writes about the upcoming changes in Swedish gambling market
10 ENTRY-EXIT SYTEM
24 ALZHEIMER’S DISEASE
Andres Anvelt, Minister for the Interior, Estonia and Hon. Michael Farrugia, Minister for Home Affairs, Malta, agree that the EU should work together to defeat terrorism and strengthen security
Key policy experts challenge the stigma surrounding Alzheimer’s and offer strategic approaches on risk reduction
14 MOBILITY BULLETIN Maja Bakran Marcich, Deputy Director General from DG MOVE says now is the time to embrace the new norms of mobility
16 IMMIGRATION Laura Thompson, Deputy Director General, IOM calls for a long-term framework for migration governance
17 LABOUR MIGRATION Bodil Valero MEP writes why the EU needs to reform its labour migration policy
18 MIGRANT CRISIS
Kenneth Roth, Executive Director, Human Rights Watch, Volker Türk, Assistant High Commissioner for Protection, UN Refugee Agency and Michael O’Flaherty, Director, European Union Agency for Fundamental Rights find answers to today’s mass movements of refugees and migrants.
www.governmentgazette.eu | 02
32 AIR POLLUTION & ALZHEIMER’S Keith Taylor MEP, Vice President, European Alzheimer Alliance discusses the connect betweem Alzheimer’s disease and pollution
28 FRAMEWORK FOR POLICY ACTION Alzheimer’s Disease International calls upon governments to make dementia a global public health priority
29 CHARITY PERSPECTIVE Mathew Norton from Alzheimer’s Research UK says governments should join hands with charities to improve dementia care in Europe
30 MALTA’S PROACTIVE APPROACH Hon. Dr Justyne Caruana MP, Minister for Gozo discusses policy challenges in managing dementia
31 PARLIAMENT PERSPECTIVE Heinz Becker MEP and Nessa Childers MEP present the European Parliament’s perspective in managing Alzheimer’s disease
34 THE SCOTTISH MODEL Maureen Watt MSP, Minister for Mental Health, Scotland
36 OECD PERSPECTIVE Francesca Colombo and Elina Suzuki from OECD discuss forward action plan to improve treatment of Alzheimer’s disease
39 ALZHEIMER’S IN FRANCE Joël Jaouen from France Alzheimer addresses the six major challenges in managing and treating Alzheimer’s disease in France
contents 42 performance
Make your nind your ally
Our experts translate neuroscience and modern psychology research into practical strategies for better health, happiness and personal success
52 TARGET FOR RENEWABLES
62 WHO PERSPECTIVE
78 FORWARD ACTION PLAN
Daciana Octavia Sarbu MEP reiterates the need for a mandatory target for renewables
Dr Marlys Corbex from WHO Europe discusses the persisting gaps and missed opportunities in treating colorectal cancer in Europe
Diane Rolland from ICPS tracks progress in tackling diabetes in Europe and presents policy recommendations tabled at Diabetes Europe 2017
53 SUSTAINABILITY Sirpa Pietikainen MEP writes why the EU needs a paradigm shift in sustainable financing
54 ENERGY TRANSITION Dr Dolf Gielen from IRENA says all EU member states have untapped renewables potential which can be harvested in a cost-effective manner
66 COLORECTAL HEALTH Prof Fortunato Ciardiello from ESMO and Bryony Sinclair from WCRF highlight the importance of a preventative diet
Prof Demetris Papamichael from International Society for Geriatric Oncology offers recommendations for managing cancer in the elderly
55 GOING GREEN
71 QUALITY DEBATE Peter Naredi from European CanCer Organisation highlights an essential debate in cancer care in Europe
56 CLEAN ENERGY
58 COLORECTAL CANCER Eight leading healthcare organisations in Europe present a joint action plan to prevent and manage colorectal cancer in the European Union
Dr Stefanie Gerlach and Dr Sehnaz Karadeniz from IDF Europe assesss current diabetes policy in Europe
68 GERIATRIC ONCOLOGY
Monique Goyens from BEUC brings out the consumer perspective to the EU energy transition Pierre Jean Coulon presents the practical recommendatiions made by the European Economic and Social Committee
80 TACKLING DIABETES
72 NEED FOR COLORECTAL SCREENING Geoffrey Henning from EuropaColon writes about a need for a comprehensive populationwide screening
75 ROADMAP FOR FUTURE Prof Thomas Seufferlein from United European Gastroenterology discusses the state of treatment and care of colorectal cancer in Europe
84 SLOVENIA CALLING If Slovenia isn’t on your bucket list already, it should be! Read Jen Lowthrop’s travelogue to find out why. What with it’s mesmerising snow-capped mountains, stunning food and wine, vibrant eco-culture and exciting apitherapy practices, it’s an ideal option for your next shortbreak
Government Gazette | 03
Government Gazette, Vol 2, 2017
Commissioning Editor, Government Gazette
It’s more than a new look!
oday, we re-introduce Government Gazette, with a refreshed new look. This is not merely a cosmetic change, but a substantive makeover in terms of content as well. We bring to you a collection of thoughtful opinions on a wide range of issues shaping your world including policy, psychology and lifestyle. As for the design, we have taken a steadfastly contentdriven approach. In other words, the design has been constructed in a manner to communicate content rather than compete with it for attention. The effort has been to marry the two seamlessly and produce a look that favours cleanliness over clutter, an easy elegance over exaggerated effect. Some things however remain the same. The fundamental values that have inspired Government Gazette and have earned it your trust — such as the commitment to accuracy and fairness — remain unaltered. In our current edition, we look at some of the most pressing debates in Europe, including those relating to Brexit, terrorism, border security, migration, healthcare, energy, mobility and gambling. Europe has once again been struck by terror. As we live in an increasingly unstable world, tackling terrorists’ use of the internet has become central to the European Commission’s work to defeat terrorism. In our security bulletin this quarter, European security chief, Julian King writes about the EU’s plans to tackle terrorism. Europe should step up information exchange among police and cybercrime experts, as MEPs highlighted in a recent vote. Andres Anvelt, Minister of Interior of Estonia argues that Europe should work together to establish a more transparent information space for our law enforcement authorities. Just as we go to print, the European Commission has announced an additional €4 million in humanitarian aid for Serbia to assist the thousands of refugees in the country. On that note, we’ve commissioned a few experts from IOM, UNHCR, FRA and HRW to find answers to today’s mass movements of refugees and migrants. This year’s EUROPEANMOBILITYWEEK witnessed a record participation with nearly 2,510 towns and cities promoting the European Commission’s theme of clean, shared and intelligent mobility. Following the EUROPEANMOBILITYWEEK this year, we were at the CIVITAS annual conference in Torres Vedras, Portugal, organised by a network of cities dedicated to cleaner, better transport in Europe and beyond. From bus-stop book
booths to pop-up parks, car-free days to intelligent bus stops, each city had unique ideas to promote sustainable mobility within their communities. A common goal was to engage citizens in the process, which – according to local city organisers – leads to the best outcome. As dynamic changes within the mobility ecosystem are currently underway, hundreds of mobility experts and local government officials discussed an array of gamechangers that we can expect in the coming years. Government Gaazette has captured a glimpse of the most interesting trends to watch out for. Our supplement on Performance explores the various tenets of psychology relating to optimising performance in your everyday lives. We’ve focussed on psychological theory in areas such as performance and positive psychology and make these accessible to a wider audience. In the current edition, Meliisssa Gokhool, Editor of the Performance supplement, looks at how to thrive under pressure and make stress work for you. Not all stress is bad, she says in her editorial. She says it possible to cultivate a general and stable positive response to stress. Interestingly, she also writes about the science behind the Churchill grip and power poses that can make you feel like a leader. Translating academic research into practical strategies for personal success, Louisa Jewell, speaker and author who has inspired thousands of people from around the world to flourish with confidence, writes about how positive psychology can enhance performance at work. NYT bestselling author Shirzad Chamime shares strategies to defeat your internal saboteurs and explains how a more positive outlook can help you reach your true potential. One of the most fundamental characteristics about humans is their desire to share opinions with an intention of having a powerful impact on others. But, why do our well-meaning attempts to influence others often backfire? In an exclusive interview, TED speaker, author and neuroscientist Tali Sharot explains what convinces people—and what does not. Our new travel column features Jenny Lowthrop, author of the much loved travel blog, She Gets Around. In her first travelogue, she writes about why why Slovenia should be your next short break. Our healthcare bulletin this quarter analyses the large financial costs of Alzheimer’s disease, colorectal cancer and diabetes. As the costs of care are growing faster than the prevalence of these diseases, we have brought together parliamentarians and healthcare institutions to develop national plans across Europe
President of the European Council
Where is the European Union heading?
ritain’s referendum campaign was full of false arguments and unacceptable generalisations. But it would have been a big mistake to interpret the negative result exclusively as a symptom of British exceptionalism and Euroscepticism, because all over Europe, even moderate voters were asking “Is the European Union the answer to problems of instability and insecurity, or is it now standing in the way?” To find a clear answer to this question, at my invitation, the leaders met as a community of 27 in Bratislava in September 2016. The result was the Bratislava Roadmap, which was a set of specific, realistic commitments, carefully tailored to voters’ real concerns.
together with key countries such as India and China.
The progress we have made since Bratislava didn’t come easily. On the contrary, each achievement was a tough battle on the way to restoring public confidence. Let me give some of the most important examples. In the first place, leaders promised never again to allow a return to the uncontrolled migration flows of 2015. As a result, the new European Border and Coast Guard was declared operational in December last year, and help was given to Greece, where over 1,000 European border guards are present. In addition, we have started providing financial assistance to refugees in Turkey. Likewise, earlier this year, after leaders agreed to close the Central Mediterranean route, our effort to train and equip the Libyan coastguard has led to a sharp drop in arrivals to Italy.
Security was also, rightly, one of citizens’ major concerns. We live in an increasingly unstable world, where terrorism, geopolitical tension and cyber-attacks threaten our safety and interests on a daily basis. While the European Union’s contribution to peace, conflict resolution and humanitarian efforts is globally recognised, we cannot ignore the continued presence of hard power in the world and, indeed, around our own borders. This is why Europe must be even more united, capable of defending itself, and responsive to threats such as hybrid war. To this end, leaders have since Bratislava committed to serious defence cooperation, and begun using the EU’s leverage to confront Islamist radicalisation on social media. We have also maintained the pressure to create, modernise and link EU databases needed for border security.
On climate: the entry into force in November 2016 of the Paris Climate Change Agreement thanks to EU efforts was a significant boost to our morale. More importantly, it also demonstrated Europe’s continued leadership on the global stage. We have been clear since then, also to the new US administration, that the agreement must be implemented and cannot be renegotiated. The EU is now working to fulfil the commitments from Paris, both internally and globally,
Europe continues to be a global leader in free and fair trade. A month after Bratislava, we signed the CETA agreement with Canada, and in July this year, a political agreement on an EU-Japan free trade deal. In doing so, we kept our promise to the public at Bratislava to give Europe the power to defend our citizens from unfair trading practices. As you know, new robust trade defence instruments were agreed last week, after months of tough debate. While our ambitious programme of trade expansion continues, we will not hesitate to use these new tools against trade hooligans.
Over the past year, two other developments have brought fresh hope in the European idea. Firstly, our conduct in the Brexit talks has shown the European Union at its best: in terms of unity, political solidarity and fairness towards the United Kingdom, from drafting the EU guidelines to the negotiations themselves. And secondly, the European economy has woken up. Few economic observers would have predicted a year ago that average GDP growth in the European Union
would be 2 per cent; that the eurozone would be recording its fastest rate of growth since 2011; or that the common currency would be enjoying the highest levels of popular support in over a decade. Unemployment has now fallen below 8 per cent. Europe has got its act together, but given the challenges we face, we cannot be complacent. It is for this reason that at the summit in Tallinn two weeks ago, European leaders discussed how to speed up decision-making at the European level, but above all, how to maintain our unity at 27. I was also given the mandate to develop the Leaders’ Agenda for the next two years. I am now in the middle of these consultations, whose main aim is to provide real solutions to real issues of concern for our citizens, inter alia unemployment, irregular migration, fears connected with globalisation, and, of course, still Brexit. Here I would like to refer to Prime Minister Theresa May’s recent words. We hear from London that the UK government is preparing for a “no deal” scenario. I would like to say very clearly that the EU is not working on such a scenario. We are negotiating in good faith, and we still hope that the so-called “sufficient progress” will be possible by December. However, if it turns out that the talks continue at a slow pace, and that “sufficient progress” hasn’t been reached, then - together with our UK friends - we will have to think about where we are heading. Today I ask you to respect - in your intentions - the constitutional order and not to announce a decision that would make such a dialogue impossible. Diversity should not, and need not, lead to conflict, whose consequences would obviously be bad: for the Catalans, for Spain and for the whole of Europe. Let us always look for what unites us, and not for what divides us. This is what will decide the future of our continent This is an abstract of President Donald Tusk’s address to the European Committee of the Regions
Fighting extremism in a networked era
Let’s work together now As extremists are increasingly using the internet to radicalise the vulnerable and marginalised online with their poisonous ideology, the European Commissioner for the Security Union, Julian King raises the bar in Europe’s fight against online radicalisation and calls on civil society partners to do more to counter extremist material online
ackling terrorists’ use of the internet has become central to our work to defeat terrorism. We have witnessed, time and again, how terrorists have exploited the internet to pursue and promote their objectives. Propaganda videos, instructions on how to conduct terror attacks and calls for attacks in the West using “all available means” have all heavily featured online. The aim of this material is to radicalise, recruit, encourage and direct terrorist activity, aiming to instil fear amongst our citizens. Da’esh is often considered the most prolific user of the internet, although their output in recent months has decreased. Nevertheless, we should expect them to seek to maintain their online presence as they attempt to compensate for their physical decline on the ground. In this vein, and for as long as their propaganda is able to circulate and multiply online, the internet will continue to provide a lifeline to Da’esh, long after it is rolled back on the ground. We should also not ignore other terrorist groups who operate online such as Al Qaeda, Jabhat Fateh-al Sham, Boko Haram, as well as a worrying rise of violent right-wing extremists. They learn from each other and adapt their online behaviour accordingly. Whilst their ideologies differ, they are united in their intent to sow division and radicalise, preying on those who feel disadvantaged and marginalised within the society.
Tackling radicalisation remains at the forefront of our counter terrorism response. A long-term, concerted and collaborative effort is required, and to be successful it needs to include all actors: internet service providers, governments, law enforcement authorities as well as civil society organisations. The EU Internet Forum set up in 2015 by the Commission strives to do just that, bringing the relevant stakeholders together to discuss the challenges and agree a collaborative way forward. Academic researchers also keep the forum up to speed as to how terrorist behaviour is evolving online. Over the course of last year, substantial progress has been made in reducing accessibility to terrorist content online. The Internet Referral Unit at Europol is doing an excellent job in scanning for terrorist material in the public domain and then referring it to the relevant platform, where it is assessed against the company’s terms and conditions. Over 90% of pages referred are taken down. We also welcome the so called “database of hashes” initiative developed by some of the large companies to prevent material which has been removed from one site popping back up on another. We now need more companies to get involved and further deepen that cooperation. Despite these efforts, there is still much more that we need to do to protect online users from harmful content – particularly the young and the
vulnerable. For example, we need to see what can be done to enable online users to be able to distinguish fact from propaganda. More generally, we need to do more to prevent and deter others from venturing down the route which leads to violent extremism. It is civil society partners rather than governments who are best placed to deliver such messages – not least because disaffection with the ‘system’ seems to be a recurring theme amongst those who have been radicalised. But those who do have the ‘credible voice’ often lack the resources or the technical know-how to be able to deliver effective campaigns online. That is why we have a programme of work underway to empower civil society partners to do just that, and we have committed €10 million to support this effort. There has never been a more critical time for us to focus our joint efforts and resources on tackling this online phenomenon. The EU Internet Forum has demonstrated that a private-public voluntary approach, based on human rights, shared values, and a joint determination to protect EU online users, can work. The scale of this challenge is indeed immense and we must ensure that our online efforts go hand-in-hand with our offline efforts to counter violent extremism and prevent further atrocities
Security, Brexit and more...
Charles TANNOCK mep Member, European Parliament (European Conservatives and Reformists Group)
he British Prime Minister Theresa May has repeatedly stated that Brexit means Brexit. However, security is so interwoven into the fabric of European cooperation that a cliff-edge abrupt withdrawal from all EU security machinery would make both the UK and the EU significantly less safe. It must surely have never been the intention of pro-Brexit campaigners to jeopardise border security and such a possibility would be considered an act of gross negligence by any responsible government committed to defence of the realm as its top priority. Britain has now suffered three major jihadi terror attacks this year alone and although the www.governmentgazette.eu | 08
Britain’s security will suffer after it leaves the EU majority of the terrorists were British-born, in the London Bridge attack one of the perpetrators entered the UK on an Italian passport and recorded on the SIS database as under suspicion and another managed to travel from Dublin to London undetected by the Garda under the common travel area. At a time when terrorist attacks and border security are part of the national
consciousness, it is ludicrous that so little priority is being placed on ensuring that the cooperation we have built up with EU partners
over decades can continue. It is deeply worrying, for example, that the issue of security has not been included within the first phase of Brexit negotiations for the Article 50 withdrawal agreement along with the issues of the northern Ireland border, EU citizens’ rights and the divorce bill. Access to EUwide databases and cooperation with authorities in other member states are not just ‘nice to have’ perks of EU membership. They are essential tools in the fight against terrorism, radicalisation, people and drug trafficking and all criminal activity. So how should Brexit negotiations progress if we are to hold fast to the aim of maintaining and improving security in the UK out of the EU?
Firstly, security discussions should be set apart from the main Brexit negotiations agenda by forming a separate working group. Of course, the work of such a group is daunting and unravelling and re-establishing the way the UK works together with its European neighbours will not be an easy task. However, much could be done to minimise the damage of Brexit if security is not used as a bargaining chip as some have rightly or wrongly interpreted the Prime Minister’s Article 50 notification letter, and if security negotiations start early rather than only after “substantial progress” is deemed to have been achieved in phase 1 of the negotiations by the EU 27. One of the first tasks will be to sort out the UK’s relationship with Europol. Although it
is likely the UK will have to leave the Europol Management Board and will probably lose direct access to databases as well as the ability to initiate or lead intelligence operations following Brexit, maintaining operational cooperation with the organisation should be a priority. Indeed, given the increasing level of dependence of the British police forces on Europol, a full withdrawal from Europol structures would be deeply, and mutually, counter-productive. Among other things, Europol is involved in countering the ever-increasing threats of radicalisation and peoplesmuggling. It is certainly not the right time to take a step back from organisations equipped to fight the same battles that the UK is facing. Similarly, the UK government should also ensure continued participation in the European Arrest Warrant. Participation after Brexit is not straightforward including the ongoing EAW supervisory role of the ECJ categorically ruled out by the UK government. Norway and Iceland reached an agreement to use the EAW in 2006 but the accords have still not be ratified by all member states ten years later. They also encountered a problem of justiciability of the ECJ and have come up with a dedicated bilateral ad hoc court arrangement which might suit the UK as an alternative to the ECJ as well. Signing 27 bilateral agreements has also been referred to as ‘fanciful’ by senior officials. It makes sense for the UK to take part in the EAW but work should start now so that an accord can be agreed before the end of the Brexit negotiations. Similar efforts to keep the invaluable tools of the Passenger Names Record Directive, the Schengen Information System II and the European Criminal Records Information System as well as participation in the Prum Convention also need to be on the agenda. Many of the votes cast for Brexit were a response to immigration concerns and it is well-known that several British citizens
blame the EU for uncontrolled migration into Britain and for the government’s inability to screen out terrorists and jihadists, even though the UK is not in Schengen or the EU Common Asylum and Immigration Agreement. However, what is often lost in the debate is that the EU does plenty to help the UK control its borders. The abrogation of Le Touquet Treaty by France for example could mean that immigrant camps spring up on the UK side of the channel. Consequently, the UK should also seek to agree an enhanced Working Agreement with FRONTEX, the European Border and Coast Guard Agency. Rather than finding that UK borders are more secure postBrexit, without the support of our European neighbours, Britain would soon find that our borders are more under pressure than ever before. Cooperation with the EU on matters of both internal and external security has long been viewed as a key complementary tool in furthering our foreign and defense policies with clear benefit to the UK. In order to preserve this partnership for the benefit of every UK and EU citizen, the work needs to start now
It is not the right time to take a step back from organisations equipped to fight the same battles that the UK is facing. Government Gazette | 09
Asylum, migration and border contol
Hon. Michael FARRUGIA Maltese Minister for Home Affairs and National Security
As far as Malta is concerned... The new innovative IT border system is an important element of the EUâ€™s Smart Border Initiative, and the primary focus of the Maltese Presidency, to improve security in the EU. Maltese Minister for Home Affairs and National Security, HON. MICHAEL FARRUGIA discusses the Maltese proposals regarding asylum, migration and border control
n the first half of 2017, the Maltese chaired discussions relating to seven asylum proposals, that would comprehensively reform the Common European Asylum System (CEAS). They also discussed several proposals relating to border management, including the Entry-Exit system and the European Travel Information and Authorisation System (ETIAS). The former set of proposals set out to create a Common European Asylum System, further to introducing the concept of solidarity in the framework of the Dublin Regulation. The latter set of proposals set out to provide immigration authorities with the required tools to better address over-staying and mala fide travel into Europe. In the border management sphere, the Maltese Presidency secured an agreement between the co-legislators on political issues relating to the proposal for an Entry-Exit system, whereas the European Council agreed on a general approach on the ETIAS proposal.
As far as asylum is concerned, the Maltese Presidency adopted a thematic approach, focusing on limiting abuse and secondary movement, socio-economic rights of asylum seekers and beneficiaries of international protection, as well as ensuring guarantees for people with
Key points of concern were addressed across the board in an effort to arrive at a balanced compromise. Progress was also registered in relation to other elements of the proposals. Furthermore, the Maltese Presidency secured broad political agreement with the European
www.governmentgazette.eu | 10
Parliament on an EU Regulation to establish the EU Agency for Asylum. The Maltese Presidency also sought to reach agreement on a solidarity mechanism within the Dublin Regulation. Whilst some broad lines have been identified by the Maltese Presidency, which earned
the support of a majority of member states, further work is required in order to move towards convergence between member states. Malta will continue to promote the implementation of the concept of solidarity and its permanent inclusion in the EU legislative framework, given the Maltese government
considers that it may never truly have a Common European Asylum System without the element of solidarity. In fact Malta has supported, in word and deed, relocation from Greece and Italy. This is because we consider that common standards cannot be achieved on the ground, as opposed to only on paper, if some member states have to carry the burden on their own, without the assistance and support of the other member states. When considering this, it should be borne in mind that Malta continues to face considerable asylum pressures even if there has been a decrease in the number of irregular
migrant arrivals. As a matter of fact, in 2016 Malta received approximately 1,900 asylum applications, and was ranked fourth amongst EU member states in terms of number of asylum applications per capita. Malta will continue supporting progress relating to other asylum proposals and step up security at our external borders. Besides achieving progress in relation to the Entry-Exit system and ETIAS; the Maltese have also concretely contributed to reception efforts and maritime surveillance operations in the Mediterranean. We have responded to EASO and FRONTEX calls in the context of hotspot operations,
have been pledged to the JO operation. Moreover, AFM is also carrying out medical evacuations from among rescued migrants, who are disembarked in Malta even when they have been rescued outside Maltaâ€™s area of responsibility as identified in relevant international instruments. Furthermore, AFM is also taking part in EU NAVFORMED Operation Sophia with the deployment of officers as well as the provision of training for the Libyan Navy Coastguard in Malta, as well as in the Seahorse Mediterranean project, particularly through the provision of training. These efforts have made Malta a key player in the Mediterranean
insofar as migration and asylum, as well as their security aspects are concerned. The Maltese will uphold this role in the coming months and years. We firmly believe that current initiatives at the EU level are positive and that they need to be upheld. However, we also need to keep looking forward. In particular, we need to work more with the authorities in Libya to stifle the activities of migrant smugglers and traffickers. Access to Europe cannot continue to be controlled by a group of people whose only concern is monetary, and who have no regard whatsoever for human lives, rights or the security of Europe and North Africa
The road ahead Malta will continue promoting the implementation of the concept of solidarity
Malta will continue supporting progress relating to other asylum proposals
in 2016, Malta was ranked fourth amongst EU member states in terms of number of asylum applications per capita.
and provided assistance via the Union Civil Protection Mechanism. Moreover, the Armed Forces of Malta (AFM) have participated in Joint Operation (JO) Triton since its inception. AFM personnel, along with their aerial and maritime assets, have been made available to the JO on a year-long basis. Currently up to 80% of AFM aerial and maritime resources
Malta will step up security at its external borders
The Maltese will work more with the authorities in Libya to stifle the activities of migrant smugglers and traffickers.
Government Gazette | 11
Fighting extremism in a networked era
Andres ANVELT Minister of the Interior of the Republic of Estonia
We will defeat terrorism by uniting digitally As extremists are increasingly using the internet to radicalise the vulnerable and marginalised with their poisonous ideology, Minister of the Interior of the Republic of Estonia, Andres Anvelt discusses current measures to tackle online radicalisation in Europe and calls on the civil society partners to do more to tackle extremist material online
n Thursday 17th August, a man drove a bus into a busy tourist area in Barcelona, killing 14 people and hurting at least 130 people. The next day another man attacked people with a knife in Turku, Finland, killing two. These are just a few examples from the last few weeks among dozens of horrible terrorist attacks in recent years in Europe. In fact, the last two years are likely to go down in recent European history as one of the most tragic periods of the
decade. There were 22 successful and 30 foiled terror attacks in seven European countries, just in the last year. Most were claimed by Daesh but at least two were directed against Muslims. Every time such senseless violence occurs, people ask – how do we prevent those attacks and should we close our borders? First of all, most of those attacks in Europe were conducted by our own citizens and have got nothing to do with migration. Therefore, I say we should do quite the opposite - instead of isolating ourselves into 28
We should stand firmly as one European Union and work together to establish a transparent information space for our law enforcement authorities.
separate European countries, we should stand now more firmly than ever as one European Union and work together to establish one transparent information space for our law enforcement authorities. As the holder of the Presidency of the European Council, we have made interoperability of IT systems a top priority in safeguarding our border and internal security. Let me state clearly that bringing necessary information together through interoperability does not mean creating a new
database or a super-database but making good use of the ones which already exist. Freedom of movement is one of our most valuable rights in the European Union and we have to put every effort into maintaining this right. However, without modern IT solutions, it would be increasingly difficult to maintain the Schengen Area that enables around 500 million Europeans to travel without internal border controls between most parts of the European continent. This summer, we made a huge step forward when we reached political agreement to establish an Entry-Exit Information System to register entry, exit and refusal of entry information of third country nationals that cross the external borders of the Schengen area.
safeguards on fundamental rights are the most important guiding principles for us in this regard.
EU member states to agree on a renewed mandate for the agency.
Another important issue is to have a good gatekeeper and developer for our data and IT systems. The EU information systems in the field of Justice and Home Affairs are developed and managed by the EU Agency eu-LISA.
For our information systems to have the best possible impact on the EU’s internal security, in the mid-term perspective, eu-LISA should manage all relevant information systems, covering other areas important for internal security, such as customs.
The Estonian EU Council Presidency strives to make eu-LISA fit for all important challenges in the field of Justice and Home Affairs. Thus, we will lead negotiations between the
This is an idea that the Estonian EU Council Presidency will promote along with other important measures, such as strengthening external border checks, obtaining
efficient control of weapons and explosives, guaranteeing early detection and warning of radicalization and supporting more confident inter-agency cooperation with effectual information exchange in Europe. Let’s make Europe more united and our lives safer by using digital databases on an EU level. Taking all these ambitious cooperative initiatives on board, the European Union must unite in its digital development, and return to the roots of the Union, but in 21st Century’s way
Data protection is another fear that people have regarding interoperability. Let me assure you that modern information technology is the best means of upholding the highest principles of data protection as enshrined by the European Union Charter for Fundamental Rights. Imagine if all our data were stored on paper in a cabinet locked away in a vault. Perhaps we would have cameras set around the vault, but then we would only know who had access to our data but not what exactly they saw. With a well secured and closely supervised databases you will always have a record of who is searching for information and what that information is. It is the ambition of the Estonian EU Council Presidency to make the maximum use of the various information systems to create a safer and more secure European Union. We will continue our work to make existing and future information systems exchange data smoothly by 2020. Data protection and
Elissavet Vozemberg-Vrionidi MEP
I hope that it will be operational as early as 2020, and we also hope to have the European Travel Information and Authorisation System (ETIAS) to be in place shortly after. That will provide the member states in the Schengen area information about visa-free travellers before they embark and enter the EU. However, these are just a few examples of vital databases.
MEPs urge stepping up measures to prevent cyber attacks
uring a Preneray session in October this year, MEPs voted to step up information exchange among police, judicial authorities and cybercrime experts. They also emphasised the need to streamline common definitions of cybercrime, cyber warfare, cybersecurity, cyber harassment and cyberattacks to ensure that the EU institutions and EU member states share a common legal definition. Regretting that preventive measures taken by individual users, public institutions and businesses have been inadequate so far, MEPs underlined that the fight against cybercrime
in Europe should be about safeguarding and hardening critical infrastructure and other network devices and not only about pursuing repressive measures. Given the threat of terrorism has become a grim fact of life for parts of Europe, EP rapporteur Elissavet Vozemberg-Vrionidi (EPP, GR), noted that fighting cybercrime is not an easy task. “Criminals often get ahead of us. We need to focus on prevention, data exchange, pooling the experience of member states, judicial authorities and police forces and facilitating evidence collection, while respecting human rights.”
MEPs also advocated to improve information exchanges through Eurojust, Europol and ENISA, to invest in education to solve the lack of qualified IT professionals working in cybersecurity, promote the use of encryption and other anonymisation tools, and launch awareness campaigns to ensure that children, public administrations, vital operators and companies learn how to be safe on line. They also insisted on setting up teams to which businesses and consumers can directly report cybersecurity incidents and establish databases to record all types of cybercrime
CIVITAS Forum Conference 2017
Janani KRISHNASWAMY Commissioning Editor, Government Gazette
‘Now is the time to embrace the new `norms of mobility’
magine a day when vehicles hardly ever crash, traffic jams are rarities, energy demand drops, trip costs plummet, parking lots almost disappear and law enforcement ceases to concern itself with traffic. That day is not too far away. Seamless multimodal transport will soon become the new norm. Much of the technology to change this vision into reality already exists. While automakers are experimenting and inventing newer models, and have passionate visions for the future of mobility, hundreds of mobility experts, city planners, policy makers and key stakeholders got together recently at the 15th edition of the CIVITAS forum to discuss how European cities are transitioning towards integrated mobility. Following the European Mobility Week that commenced on 16 September, the 15th edition of the CIVITAS forum was organised from 27-29 September in the municipality of Torres Vedras, Portugal. The conference focused on
© CIVITAS/Mirjam Simpson-Logonder
how to promote clean, shared and intelligent mobility. In line with the theme of this year’s EUROPEANMOBILITYWEEK, mobility experts from governmental and non-governmental organisations, industry and academia shared their experiences on a diverse range of topics from autonomous transport, electric power trains and vehicle sharing to other advances that are transforming mobility. While the way that people get around cities is changing tremendously, each city is unique and the transition to integrated mobility will also play out differently, and produce different results, from one city to the next. This year’s conference proved to be a forum for small and medium-sized cities, which can have big ideas for mobility and also make them happen. Maja Bakran Marcich, Deputy Director General of European Commission’s DG MOVE opened the conference on a serious note, observing that mobility plays a major role in city planning and cities are the centre of mobility plans. She noted that “the current evolution in transport is offering Europe a great opportunity to be the most competitive player in the planet” and highlighted that now is the time to embrace the new norms of mobility. Congestion is already close to unbearable in many cities and is almost costing as much as 2 to 4 percent of national GDP, by
measures such as lost time, wasted fuel, and increased cost of doing business. “With the current rate of air pollution in cities and the everincreasing number of road accidents resulting in nearly 23,000 deaths annually across Europe, now is time to speed up our activities towards sustainable models of transport,” says Maja Bakran. As newer technologies are transforming the way we live and the way we are mobile, “there is a (pressing) need to take some urgent actions to make our transport more sustainable and adapt to this ever changing environment.” Three key points should be understood in order to efficiently implement new transport services, Maja said. “Cities are facing tremendous challenges. On one hand, there are several organisational barriers. There is a need for dedicated platforms to exchange information and share best practices. Secondly and crucially, there are several financial barriers. Successful implementation of all new technologies requires significant investment. Thirdly, we really have to be fully aware of what’s going around, then plan ahead before we realise our vision.” Autonomous driving
Officials noted that driverless trucks could be a reality within two years but driverless cars may be integrated with traffic within the next ten years. However questions of whether
Is automated driving really the gamechanger for the future? The answer to this question “depends on what really is the game we are about to change.” There was much worry at the conference that fears of automated cars may outweigh its benefits. Sharing gets you further Another state of personal mobility that was actively discussed at the conference was the continued growth of shared access to vehicles. We all know how the ‘sharing economy’ has revolutionised various aspects of our lives. Mobility is just another aspect that is undergoing transformation because of sharing. In recent years, shared mobility has had an increasing impact across Europe. Shared mobility services have developed in several forms – from the more traditional car sharing, ride sharing, and bike sharing services to more innovative solutions of ride sourcing and car park sharing. Nearly 30% of city centre traffic, which is considered to be caused by drivers searching for a parking space may be saved in future - thanks to unique parking guidance systems. Steen Moller, Deputy Mayor of Denmark’s city of Odense who shared the story of the city’s transformation into the most liveable city in Denmark, noted that “rise in shared mobility will grow exponentially over the coming years.” People may not want to buy cars and young adults may not want to get licences anymore, what with the current level of vehicle sharing across the continent. Sharing a ride with a friend or a colleague has never been easier. Alternative fuels for buses and cars According to the European Commission, every year more than 400 000 people in the EU die prematurely due to the consequences of air pollution: this
is more than 10 times the toll of road traffic accidents. Nearly 6.5 million people fall sick as air pollution causes diseases such as strokes, asthma and bronchitis. If this needs to be changed, electric and hybrid buses running on fossil fuels are the way forward. It was quite apt that the uptake of energy-efficient vehicles was a key focus at the conference. The European Commission’s new Clean Bus Deployment Initiative was also in the spotlight: a series of local politicians signalled their commitment by signing it at the Politicians’ Forum on the first day. While there were a few frontrunners, Maja noted that there is currently “a lack of ambition among member states.” She noted that the European Commission will come up with an action plan for the introduction of alternative fuels in vehicles in November this year and make available additional finance to make deployment of alternative fuels a reality. Cycling making a resurgence in popularity A vibrant bike culture is growing across Europe. In countries like Denmark and Holland, cycling is the norm for both general transportation and commuting to work or school. With more infrastructure that promotes bikesharing and dedicated cycling paths that make cycling more safer, this will only get better. Philippe Crist, who strongly believes that 21st century cities won’t work without cycling, noted that “it’s really important to find out what policies we should put in place to encourage people who aren’t cycling - the people who are afraid to cycle in the present conditions - the old, very young, the women and other different types of people who are hesitant.” One fundamental policy, he said will increase the adoption of cycling across Europe is “the infrastructure that will make people feel more safe.” Look out for more updates about the future of mobility in Europe in our next edition
As dynamic changes within the mobility ecosystem are currently underway, there are a number of game changers that we can expect to be coming in our cities in the next few years. We can only see some of them right now. Some of them are beyond the horizon, for which we have to prepare now. On the sidelines of the conference, Philippe Crist from the International Transport Forum at OECD noted that “the arrival of driverless autonomous vehicles (AVs) represents a unique opportunity for a fundamental change in urban mobility. Drones used for commercial purposes are another.”
automated vehicles will kill off mass transit or whether they may affect the growth of other modes of sustainable transport such as cycling remains unanswerwed.
A plan for Europe’s refugees
Laura THOMPSON Deputy Director General, International Organisation for Migration
Towards a long-term framework for migration governance International Organisation for Migration Deputy Director General, Ambassador Laura Thompson says now is the moment to devise a long-term framework which
would allow up-dating and interlinking the existing laws and policies as well as addressing the gaps between them
hat made for the EU’s migration crisis in 2015, was not the number of asylumseekers and migrants arriving at the shores of the Union nor a structural incapacity of its member states to adequately receive or host them. It was the scale of their determination to reach the EU member states regardless of the risks and hardship of the journey. And it was the disparity of positions on how to cope with the influx, including the difference in interpretation of the principle of solidarity among member states. It could be argued that the challenges posed by the new migration dynamics helped to map the fault lines and gaps in the EU’s migration policy vision and capacity. Two and a half years and a number of instrumental response measures (global and regional) later – this map, combined with the experience of certain immediate achievements, could serve to inform the Union’s considerations for a comprehensive, long-term, proactive, evidence- and rightsbased vision on how to govern migration. Challenge turned opportunity Since its inception and till the event of mass mixed flows, the EU’s migration governance, outside the field of asylum,
was mainly two-pronged: the Schengen/EEA-internal dimension, driven by the free movement principles and the external dimension focusing on priority regions or categories of migrants (select highly-skilled or seasonal workers, students). The EU’s border management was built on the Union and national visa and border codes – which foresaw regular bordercrossings by persons falling into one of the pre-identified categories, while irregular migration mostly occurred through arrivals from Schengenneighbouring countries or visa over-stayers. The events of 2015 required, in many ways
Now is the moment for a shift from reforming individual legal instruments and policies to devising a long-term framework vision.
received, an adaptive response at the EU and also global levels. The relative reprieve in the flows in 2017 and the forth-coming Global Compact on Migration in 2018 offer an important opportunity for the EU and its member states to consider. If the EU is to remain a project of solidarity, unity and shared values and responsibilities, it needs a new migration governance vision based on the very same principles. One that would respond both to socioeconomic (including labour market) and demographic needs as well as to the EU’s international obligations; to the needs and rights of migrants; and to the extent possible, to the needs of countries of origin and transit. Importantly, this vision should also reflect the EU’s position as one of the global champions of human rights and of solidarity with international community in hosting refugees. In the immediate aftermath of the rapidly evolving migration situation in 2015 and 2016, it was appropriate for the EU to respond with the revision of the existing instruments and mechanisms governing refugee protection and migration. The reform of Common European
parliament perspective Asylum System (the introduction of the draft resettlement legislation); the reform of the European Asylum Support Office into the Asylum Agency; the broadened mandate of FRONTEX to include coast guard support; and the mainstreaming of fundamental rights throughout the newlyrevised legislation are all important developments towards addressing the existing gaps. In response to demographic and economic needs, the recent EU Action Plan on Integration of Third Country Nationals is another welcome development, calling for valuing the skills and improving early employment prospects of non-economic immigrants. But while it is paramount to ensure integration opportunities for refugees, it is unlikely that the current arrivals of people in need of international protection will suffice to fill all the workforce needs of European economies, nor that their qualifications and skills will effectively match all shortages. In view of this and the forecasted labour and skill shortages in the EU in the short to medium term, introducing more viable legal migration avenues for economic immigrants must be necessarily part of the solution. It can further be argued that the lack of regular economic migration channels is one of the drivers of current spontaneous arrivals to the EU in the first place. Thus, now is the moment for a shift from reforming individual legal instruments and policies (each reflecting responses to past migration realities) to devising a long-term framework vision, which would allow updating and interlinking the existing laws and policies as well as addressing the gaps between them. Among those gaps are: additional legal and safe avenues of migration; visas on “humanitarian grounds”; a solidarity mechanism; and the new Union Integrated Border Management strategy which would expand to address the mixed flows, search and rescue
(SAR) at sea, and more. Enhanced Partnership and Collaboration with Third Countries With the EU’s migration governance focus having broadened to nearly all regions of the world, its collaboration framework with third countries has followed suit, most notably through the Agenda on Migration, the Valletta Plan of Action and the Partnership Framework to name a few. However, with the EU’s immigration needs continuing to compare in importance with emigration needs of third countries, the nature of third country partnerships should further evolve towards one of balanced exchange, mutual interest and shared benefit. Specifically, it should expand on a) long-term capacitydevelopment support to the countries of origin and transit to manage migration and b) exchange of expertise and experience between the EU member states and partner countries in migration, border and asylum management. It is equally important to rely on international partners – such as IOM and UNHCR, given their mandate, global footprint and expertise
Europe needs a labour migration policy reform
Bodil VALERO mep
Member of Conservatives and Reformists Group
or many years, the majority of migrants coming to Europe were people seeking a better future for themselves and their families. The fact that people challenge the unfair distribution of the world’s wealth and living conditions is not strange; on the contrary, it is natural. Today, there are about as many who flee to our borders because of war and conflict as those who come to seek better living conditions. However, with so many conflicts in our immediate neighbourhoods and limited political will in the EU to provide protection for all those who flee for their lives, focus has been mainly on refugees, leaving very little attention for migrant workers. Without a legal option for labour migration, many migrants resort to paying people smugglers to get them to Europe across the Mediterranean Sea in unseaworthy vessels. Some of them seek asylum as there has been no other way to get a residence permit. This has resulted in a high pressure on the EU’s asylum system and long waiting times for refugees who are really in need of asylum. According to the International Labour Organisation’s global estimates, in 2013, migrant workers accounted for 150 million of the world’s approximately 232 million international migrants. Even though the Refugee Convention clearly states that economic reasons are not grounds for asylum, the EU cannot afford to ignore this large group of migrants. The truth is that people will continue to seek better living
conditions and come to Europe even if all wars in the world would cease. Moreover, Europe has an ageing working population, which will shrink by almost 50 million by 2060. Demand for labour in all sectors of society, including professions requiring low or no education or qualification, will increase. These figures highlight the need for the EU member states to re-think their approach to labour migration. Regular migration avenues for migrant workers should therefore be a priority for the EU and greater efforts should be made to create legal possibilities for those who want to work in the EU. A more comprehensive approach is needed that balances the increased demand for labour and legal avenues for migrant workers. Last year, the European Commission presented a revised proposal of the Blue Card Directive, which is the EU’s main labour migration framework. Although the proposal is positive overall, the scope only includes highly - not medium and low- qualified workers. It was a missed opportunity by the Commission to tackle the demographic challenges that the EU is facing by not expanding the directive’s scope to also include medium or low-skilled workers. The EU needs to reform its labour migration policy so that we do not have to choose between helping people who flee from war and people who flee economic difficulties. We have the capacity to do both Government Gazette | 17
Human rights watch
Kenneth ROTH Executive Director, Human Rights Watch
A response guided by human rights
o one pretends there is an easy way for the European Union to manage the flow of asylum seekers and other migrants arriving by boat from Libya. Yet there are certain basic principles of human rights—and decency—that should guide the EU response. The Mediterranean crossing from Libya toward Italy has become the world’s most dangerous. Some 103,000 people have survived the journey this year through late September, but 2,471 have drowned or gone missing. What would lead anyone to risk such a perilous journey? Some flee persecution or violence at home. Others, fleeing crushing poverty, hope for a better life in Europe. But all have traversed Libya, one of the world’s most inhospitable places for migrants. Divided today among three competing authorities, Libya has become a smuggler’s paradise and a migrant’s nightmare. Non-Libyan migrants seeking transit to Europe are typically corralled and kept in squalid,
www.governmentgazette.eu | 18
overcrowded detention centers where malnutrition and illness are widespread, and forced labor, beatings, sexual abuse and torture are rife. The UN Refugee Agency estimates that more migrants are killed crossing Libya these days than die at sea. International refugee law prohibits forcibly returning anyone to such conditions, which is why boats rescuing migrants— whether operated by the EU, Italy, or nongovernmental groups—don’t return them. So far, most have been taken to Italy. Some, such as Italy’s 5 Star Movement and the far-right Northern League, criticize these rescue efforts as a “pull factor,” but there is no evidence that ending them would deter the migrants from embarking. It would, however, increase the drownings. Many of the other ideas offered for managing the flow have been similarly flawed. French President Emmanuel Macron briefly suggested that the EU screen asylum seekers inside Libya to avert the need for them to take to the sea, but he quickly withdrew
the idea once it was pointed out people from fleeing the brutal that Libya is safe neither for the dictatorship in Eritrea is wrong on screeners nor anyone seeking to both fronts. be screened. Yet there are steps that the EU The EU is supporting Libyan should prioritise. coastal forces, arguing that they will curtail smugglers and Economic development assistance to countries that are the source of save lives, but under current large-scale economic migration to circumstances these forces are doing indirectly what the EU is Europe may help, at least in the prohibited from doing directly— long term. sending people back to the Educating would-be migrants horrible, lawless conditions of about the dangers of traveling detention. Separate deals with through Libya or taking to the sea militias who would otherwise with smugglers may also help to be involved in smuggling may curtail the flow. be behind the significant drop Increasing safe and legal channels in boat departures during the into Europe—through more summer – normally a peak generous refugee resettlement crossing period – but no one can predict how long that will from countries other than Libya, family reunification, and hold. In the meantime, those who might have escaped remain humanitarian work and study trapped in a hellish environment.visas—would provide some people with options safer than risking The EU and its member states their lives crossing Libya and the have also supported other Mediterranean. And it would countries where migrants enhance Europe’s response to the originate, hoping to shut off global refugee crisis, currently the flow at the source. But handled mainly by poorer supporting, for example, border countries. forces like Sudan’s, which have Still, given the desperation of integrated former militias implicated in atrocities such as people fleeing toward Europe, many inevitably will continue to slaughtering civilians, to stop
undertake the dangerous journey. Those who make it have a right to a hearing on their claim to stay in EU states, whether by virtue of a need for asylum, family reunification, or humanitarian relief. Because of the EU’s Dublin Regulations, which require these claims to be examined where an asylum seeker first arrives, the burden has fallen mainly on Italy and Greece, both overwhelmed by large numbers of migrants and severe economic problems. A binding EU decision to relocate 160,000 asylum seekers to other member states has been carried out by only a few countries, with the result that, as it ended in September, only 9,078 had been relocated from Italy, fewer than the average number of new arrivals there in a single month. Revising these outdated rules, while sharing responsibility more evenly among EU governments, would ensure prompter hearings and thus the quicker return to their home countries of migrants who, after fair consideration of their claims, are found ineligible to stay. Those would be key steps for discouraging migrants from attempting the journey without a plausible legal claim to stay in the EU. One starting point would be for other EU countries operating in the Mediterranean to accept Italy’s request to take some rescued migrants to their own ports for processing, not only to Italy. The EU’s current out-of-sightout-of-mind policy—trying to barricade even legitimate asylum seekers inside Italy or Greece—is guaranteed to aggravate the human hardship. The undeniable strain on these two countries, and the political and social tension that it fuels, could be minimised if responsibility were shared across more countries. None of these steps would be a panacea. Complex problems do not admit simple solutions. Yet a response guided by human rights principles—as well as greater cooperation and compassion— would ensure that the EU stays true to its founding principles as it grapples with the latest challenge to its borders
Finding answers to today’s mass movements of refugees and migrants
Volker TURK Assistant High Commissioner for Protection, UNHCR million people are displaced either within their countries or across borders. Most are in the global south, where four-fifths of the world’s refugees reside. And many millions more have migrated from their countries to escape destitution.
growing number of people are on the move, searching for safety from persecution and conflict, hoping to reunite with their families, or seeking economic security in the face of poverty or the adverse impacts of climate change. This is, of course, not a new phenomenon. Displacement and migration have been central features of human history. Migration has spurred development – at times underpinning whole economies. It has contributed to diversity and facilitated cultural exchange. Yet today, some of the most vulnerable and disenfranchised people in the world are moving on an unprecedented scale, as inequality, conflict, and human rights abuses exact a high toll. More than 65.6
Refugees and migrants often move side by side. Refugees uniquely require international protection because they cannot return home due to serious threats in their country of origin, as recognized by international law. Both refugees and migrants, however, require protection from risks when moving along irregular routes, as we are witnessing in the Central Mediterranean. They may be tortured, exploited, or abused by smugglers. They may risk death in harsh deserts or unseaworthy vessels. They may be kidnapped for ransom, detained in deplorable conditions, or sold to criminal networks. Or they could be unaccompanied children or have serious medical conditions. With the growing numbers, responding to such risks in a meaningful way is a daunting proposition, but it is possible. And without doubt it’s high time that more attention was paid to finding solutions. UNHCR has already made proposals to the EU for how this might be accomplished. We also need a shift in
mind set. We can start by acknowledging the realities of both displacement and migration today. We must move from perceiving these movements as crises to be contained, to understanding that they are phenomena that we can manage responsibly and with humanity. How do we make this shift? First, we need to keep things in perspective. Today’s figures are significant, but we also saw high numbers in the 1990s, with displacement from Afghanistan, the Great Lakes, Iraq, and the former Yugoslavia. What is different today is that we have more tools at hand. This places us at an advantage. Most notably, the New York Declaration for Refugees and Migrants, adopted by the UN General Assembly last September, presents a framework for States, international organizations, and civil society to work smarter together. Second, we need to protect people all along the routes in countries of origin, transit, and destination. UNHCR’s 10-Point Plan in Action provides a repository of good practices for doing so. When people are in distress at sea, we can ensure that saving lives, timely rescue, and disembarkation to places of safety guide our actions. We can alleviate reliance on smugglers by evacuating or resettling refugees from countries of origin and transit, and allowing migrants to travel through legal channels for family reunion, work, and education. Third, we need to use the lifesaving principle of protection Government Gazette | 19
A plan for Europe’s refugees
to ensure protection for all who need it. This principle is at the heart of the 1951 Convention related to the Status of Refugees and regional refugee instruments. It has been used to protect people who flee conflict and violence or who fear persecution because of their gender or sexual orientation, serious public disorder, gang violence, and trafficking. It can also help guide our response in situations of natural hazards, humanitarian crises, and famine linked to conflict. Fourth, we need to draw upon expertise from the fields of both refugee protection and migration management. UNHCR’s protection expertise can help women at risk of violence and children who are unaccompanied along the routes. Temporary stay arrangements could be provided for individuals who are not refugees, but are unable to return immediately to their countries. Measures to regulate migration, such as labour mobility, could also provide solutions for refugees. Access to such channels can also regularize movements, fill labour shortages, and reinvigorate economies. Finally, we need to focus on the drivers behind these movements. Demographic changes, climate change and environmental degradation, and labour market shifts contribute to migration. When linked to conflict, violence, and poor governance, they can contribute to flight. We need to address their impacts at their source. And we need to do so in a way that can benefit refugees, migrants, and host communities alike, for example through not only humanitarian, but also development support. Ultimately, human mobility is a fact of life, and for many a necessity. We need to recognize this reality – to move from a place of fear to one of equanimity and compassion. And to recognise that this is a situation that is entirely manageable with the right systems in place and sufficient political will. The lives of millions, for whom flight is the only means of survival, depend on it
www.governmentgazette.eu | 20
Michael O’FLAHERTY Director, EU Agency for Fundamental Rights
Migration and security – a misunderstood relationship
igration and security are topics that have topped the European Union’s agenda for two years now. This is understandable. On the one hand, there are the innumerable images that have gone round the world of the conflict in Syria, and the overcrowded boats arriving in southern Europe. On the other hand, it is a primary duty of the state to protect the security of its population, and the spate of terrorist attacks around the EU has shaken the faith of many ordinary people in the ability of governments to protect them. However, what is neither understandable nor justifiable are the cynical attempts we have been seeing to define migration as a security threat per se. Deep-seated fears among the general population exploited by nationalist and populist groups are increasingly finding their way into the mainstream, amplified through their repetition by political leaders and social media networks. This is leading to a situation in which measures designed for emergency situations are fast becoming the norm – and to the dangerous conflation of migration and terrorism. Together with the blanket suspicion of migrants comes an increasing use of measures such as profiling based on ethnicity and religion. At the same time, tools and databases originally intended to support asylum processing
or migration management are increasingly regarded as mechanisms for law enforcement.
not give up hard-won liberties in the service of 100 percent security that will always remain illusionary.
Of course, quick and easy access to relevant personal data about third-country nationals can be a crucial law enforcement tool.
Furthermore, adopting security measures in haste, without considering their long-term impact may well have consequences diametrically opposed to their intended aim.
But wherever a security measure leads to fundamental rights limitations, they must have a clearly demonstrated legitimate purpose. We need to be very careful that we do
Why? Firstly, security clampdowns that target a particular ethnic or religious group risks alienating the
very people who need to be made to feel an integral part of European society. New data from the EU Agency for Fundamental Rights on the discrimination of Muslims in the EU, to be published this autumn, show that while more than three-quarters of the Muslim population feel strongly attached to their place of residence and have a high rate of trust in the national legal systems and police, this trust becomes considerably lower amongst those who have suffered harassment or discrimination. And without confidence in a state that is believed to be unwilling to combat injustice, the likelihood of turning to other sources for guidance and authority is far greater. Secondly, closing external borders and making it more difficult for those seeking international protection to access the EU leads not to fewer refugees, but simply to more deaths. The International Organisation for Migration has reported 2,361 deaths in the Mediterranean so far this year. And 2017 is far from over. So there is another, quite different security problem. It is a grim irony that while we in the EU are perpetually debating public safety and the potential
risks that migrants could pose in this regard, the safety of the migrants themselves is in much greater danger. Last year, there were 65 million people worldwide who had been forcibly displaced, an increase of more than 50% in just 20 years. 1.2 million people applied for asylum in the EU last year: almost a third of them came from war-torn Syria, while others were fleeing conflict or tensions in Afghanistan, Iraq, Iran, and Eritrea. The vast majority of those seeking protection – many of whom are children – long for nothing more than to be law-abiding in a law-abiding country. But in the two years that the Fundamental Rights Agency has been collecting information about the human rights situation of the refugees and other migrants arriving on our shores, we have consistently found inadequacies in reception facilities, with a high incidence of abuse and sexual assault in some places. We can also not ignore the growing body of reports about the increasingly poor conditions for migrants in countries of transit such as Libya, where abuse and trafficking of women and children have
reached horrifying levels. The “right to liberty and security of person” enshrined in the Universal Declaration of Human Rights therefore appears to be endangered to a greater extent for many of those making their way to Europe than those within it. These challenges are not only serious. They are of a magnitude the EU has never faced before. Nonetheless, I am certain they are surmountable. How? After more than two decades in the field, it is clear to me that human rights are the answer. We need to be much more vociferous in showing that fulfilling the human rights of everyone in the EU brings with it an immense potential for positive change. A greater emphasis on inclusion and on providing legal avenues for migrants to reach Europe would increase the cohesion and safety of our societies, by making integration policies more targeted and effective. This in turn would help to fill the skills gap that is growing wider in many industries across the EU, leading to more sustainable economic growth more equally spread between different segments of the population.
would confound those groups against whom we really need to safeguard ourselves: the radical extremists who preach division and hatred on the one hand, and on the other the smugglers, who have been making a fortune out of desperate people’s misery for too long. There is indeed a connection between security and migration. But it is not the one that populists and tabloids are so fond of. Rather than a zero-sum game in which either ‘terrorist migrants’ are allowed to enter the EU or our countries are kept secure, EU leaders need to realise that policy based on human rights will honour our obligations to those in need – and at the same time make our societies safer
Finally, a human rights approach Government Gazette | 21
Christofer FJELLNER mep Member of the European Parliament, EPP-SE
Substantial changes finally underway in Swedish gambling sector
ubstantial changes are finally under way in the Swedish gambling sector. Earlier this year, a public inquiry committee presented its proposals for a new gambling regulation to the Swedish government. It was much awaited and if the left-wing government carries out the proposals, the state monopoly on gambling will be replaced with a system based on licenses, allowing private actors to offer their services. While the Swedish gambling legislation seems to be developing in the right direction, the same cannot be said for Germany, a country struggling with similar problems, but with no solution in sight. The case of Germany clearly shows that much needs to be done to get a modern and well-functioning gambling sector in the whole of Europe. It has taken a lot to get to where Sweden is today. I was elected to the European Parliament in 2004 and ever since then I have worked in Brussels and Sweden alike to create change and get rid of the outdated and obsolete monopolies. Earlier in 2007, the European Commission threatened to take Sweden to the European Court of Justice (ECJ) for not complying with the EU law. It is, nota bene, allowed for member states to have a monopoly on gambling as long as it serves the purpose of consumer protection or strengthening public health. However, clearly neither has been the purpose of the Swedish
monopoly. The gambling marketing is quite aggressive and the purpose is hardly to get people to gamble less, rather the opposite. Frankly speaking, it seems as though the Swedish government and more specifically the Minister of Finance has become addicted to gambling and the gambling sectorâ€™s not unsubstantial contribution to the public treasury. Thus, governments of the past have put their own economic interests ahead of both consumer protection and a safe, wellregulated gambling market. Although it finally seems like the wind of change is blowing, it is unacceptable that it took more than a decade to achieve considerable change. Both the Swedish governments as well as the Commission are to be blamed for this delay. The Commission threatened to take Sweden to court several times, but it never happened. As the guardian of the treaties, the Commission has thereby not carried out its obligations. In parallel, on a national level, Swedish governments of different political colours have, on several occasions, assigned public inquiry committees to put forward proposals for modernising rules on gambling. But in the end nothing, or at least very little, has changed. It is sometimes said that politics beats money, but technology beats politics. That is certainly true for the gambling sector.
The Swedish monopoly is obsolete and the cross-border nature of online gambling makes it possible for companies to offer their services even to countries where the state has the monopoly. Half of online gambling in Sweden is conducted through foreign operators which are neither regulated nor pay taxes in Sweden. Thus, the Swedish monopoly has not been properly upheld or functioning for a long time. Therefore, many of the proposed changes to the Swedish gambling regulation are almost inevitable. Private operators will be allowed to offer their services on an up-to-date and regulated market based on licenses. This way the government hopes Swedish regulation and taxes will cover at least 90 percent of the gambling conducted online. However, for that to happen the government must stick to the proposed, rather low level of taxation for operators, not limit the minimum return on placed bets and sell the state-owned gambling company. Without these changes, there is an obvious risk operators will not accede to the system. Given the previous unsuccessful attempts to modernise the Swedish gambling regulation we should not count our chickens before they are hatched. But is certainly looks like yet another Swedish monopoly is going to be abolished. Unfortunately, the situation in
Germany is not as promising, even though it resembles the Swedish case. Like the Swedish regulation, the German one is apparently violating EU law. Gambling in Germany is regulated by the 2012 Interstate Treaty on Gambling. This legislation includes a complete ban on online gaming, a state monopoly in the sector of sports betting as well as favourable treatment of public casinos
compared to private gambling halls. The stated objectives of the legislation are to protect consumers and fight illegal gambling operators, but the current legislation de facto protects the state monopoly and, not surprisingly, channels players as well as private operators into illegality. As a consequence, the illegal online gambling market in Germany is flourishing and gambling addiction is on the rise. Just like in Sweden, the
News in brief
Brexit talks deadlock ‘exaggerated,’ says Donald Tusk
German model is not working properly. The ECJ has confirmed the shortcomings of the legislation on several occasions, yet the Commission constantly postpones the launch of a formal infringement procedure. There is obviously a need to address the Interstate Treaty in its entirety. Germany, like Sweden, needs a gambling legislation which meets the modern expectations and is in line with EU law. Together with some colleagues in the Parliament, I sent a letter to Commissioner Bieńkowska to make her aware of the situation. The answer we received was general and flat.
Together with some colleagues in the Parliament, I sent a letter to Commissioner Bieńkowska to make her aware of the situation. The answer we received was general and flat.
One step forward, two steps back. No, it is not that bad, even though it sometimes feels like it when it comes to gambling legislation in the EU. With Sweden eventually going in the right direction, new fights against bad, monopoly-driven legislation in the EU need to be won. Germany is a perfect example that much remains to be done
t a Brussels Summit recently, European Council President, Donald Tusk said that the reports of the deadlock between the EU and the UK have been exaggerated. In a statement released following the summit, Tusk noted: “After Prime Minister May’s intervention last night and our discussion about Brexit this morning my impression is that the reports of the deadlock between the EU and the UK have been exaggerated and while progress is not sufficient it doesn’t mean there’s no progress at all.” Tusk’s statement comes after the EU’s chief Brexit negotiator, Michel Barnier, described the talks as deadlocked earlier in October. A vast majority of MEPs also recently backed a motion signalling the lack of progress in Brexit talks. Addressing reporters, Tusk said that he was not at odds with Barnier, but his own role was to be a “positive motivator for the next five or six weeks”. The European Council hopes to move to the second phase of talks in December. Reassuring UK and EU nationals, Prime Minister May noted that “both sides have approached these talks with professionalism and a constructive spirit. We should recognise what has been achieved to date.” In a statement released after the Council summit, she has said
that “the UK and the EU share the same objective of safeguarding the rights of EU nationals living in the UK and UK nationals living in the EU.” MEPs hope the UK government will table, without delay, specific proposals to safeguard the full set of rights that 4.5 million EU and UK citizens currently enjoy, honour the UK’s financial obligations to the EU in full, resolve the Republic of Ireland/ Northern Ireland border issue, in full compliance with the Good Friday Agreement. European Parliament President, Antonio Tajani noted that May’s Florence speech demonstrated that she is open to dialogue and understands what is at stake. However, Antonio urged May to convert “goodwill into the concrete plans” to take the negotiations forward. During a fierce debate among MEPs weeks ago, EP Brexit coordinator, Guy Verhofstadt noted that the proposal from their side is “to let EU citizens retain rights they enjoy now in the UK. Let’s do exactly the same for the UK citizens living on the continent.” An additional condition for concluding the first phase of negotiations, he said is “a guarantee that EU law will be respected until the UK’s official withdrawal from the EU.” European Commission President Jean-Claude Juncker said “he hoped it would be possible to reach a “fair deal” with Britain.”
Recommendations to reshape policy making
Alzheimerâ€™s disease REPORT
Tackling Alzheimerâ€™s disease in Europe Strategies, interventions and challenges
brain talks... action plan to fight alzheimer’s Paola Barbarino, Chief Executitve, Alzheimer Disease International calls on governments to develop a joint policy agenda charity voice Mathew Norton, Director of Policy at Alzheimer’s Research UK says charities and governments must join hands to strengthen the fight against the neurological disorder the maltese approach Hon. Dr Justyne Caruana MP, Minister for Gozo discusses the country’s policy challenges in managing the neurodegenerative disease and offers policy recommendations for fellow member states urgent action required Heinz Becker MEP says now is the right time for political action across the EU alzheimer’s and air pollution As evidence slowly builds that dirty air might cause Alzheimer’s, Keith Taylor MEP urges for an explorative study of the link between air pollution and the disease the scottish strategy Scottish Minister for Mential Health, Maureen Watt MSP details Scotland’s national dementia strategy and discusses where are we now state of care Nessa Childers MEP makes an assessment of the current state of dementia care across Europe doing things differently Francesca Colombo, Head of OECD’s Health Division and Elina Suzuki, Health Policy Analyst at OECD note that a future cure requires action aimed at doing things differently solving the dementia challenge Kathleen D’Hondt, Policy Advisor, Dept of Economy, Science and Innovation, Flemish Government offers recommendations to help solve the dementia challenge across Europe the french perspective Joël Jaouen, President, France Alzheimer presents the association’s strategy that focuses on the six major challenges of managing Alzheimer’s in France the funding challenge Colin Capper, Head of Research Development, Alzheimer’s Society, writes about how the charity is addressing the funding challenge search for the alzheimer antidote VIEWPOINT: Biogen and Eisai write about their search for new medicines to treat the progressive neurodegenerative disease
ICPS Alzheimer’s Europe Roundtable
Reformulating the approach to managing Alzheimer’s in Europe On the 13th of July 2017, the International Centre for Parliamentary Studies convened the Alzheimer’s Europe Roundtable to create a platform to examine Alzheimer’s disease in Europe from a multi-sector perspective and to address key policy challenges relating to the care and treatment of the disease. JOSHUA WHITE, Research & Development Manager at iCPS, offers insight into the key recommendations proposed by the delegates of the roundtable
lzheimer’s disease is fast emerging as one the most pressing and daunting public health challenges in both Europe and around the world. The cost of dementia in Europe is forecast to rise to over $250 billion by 2030, with an estimated 14 million individuals living with dementia. Over the last two decades, Alzheimer’s disease has begun to take a place of priority on the European health policy agenda. Despite this progress, many practitioners and stakeholders agree that more needs to be done to raise awareness and develop standards of treatment and care. The ICPS Alzheimer’s Europe Roundtable brought together representatives from the European Parliament, the European Commission, members of national Alzheimer’s associations, leading clinicians in the fields of psychology and neurology, and key industry stakeholders to formulate a strategy to better manage the disease in Europe. Lobbying national governments A central theme to emerge from the roundtable discussion was the need to lobby all European national governments to implement comprehensive national dementia strategies
in order to effectively manage Alzheimer’s disease and provide a framework of care for those who suffer from it. Roundtable participants highlighted the divide between East and West Europe when assessing the prevalence and quality of national dementia strategies. Whilst Western Europe has made substantial progress implementing national dementia strategies, this progress has been less pronounced among Eastern European nations. As such, roundtable participants highlighted the need to lobby and collaborate with Eastern European Governments to raise awareness and encourage the uniform development of national dementia strategies across the continent. Striking a balance between cure and care The development of neuroimaging, biomarker
www.governmentgazette.eu | 26
indicators, brain plasticity and disease modifying treatments point towards a future where successfully treating and preventing Alzheimer’s could be a reality. However, roundtable participants stressed that we cannot pursue preventative treatments whilst concomitantly neglecting our responsibility to improve the quality of life for those living with dementia through investing in care-systems and supporting caregivers. Given the nature of the challenge posed by Alzheimer’s disease in Europe, it is vital to formulate strategies and initiatives to combat the disease. With this in mind, delegates of the roundtable put forth the following recommendations: • Policy makers should urge national governments and local authorities to incorporate national dementia strategies; • Encourage more
event roundup The enduring sentiment of the day was that although Alzheimer’s disease has begun to take its place on the agenda of policy makers as a significant social, political and economic issue, more needs to be done to raise awareness, and to further establish the disease as a public health priority, both in Europe and globally so. To truly spread Alzheimer’s awareness to all communities, we must engage on a community level; in churches or by holding educational café events; • We must identify a consistent model for care planning which puts the patient at its heart. Clinicians must be aware of how to effectively involve their patients in their care;
collaboration on a global scale. We have the tools to do this;
comprehensive national action plans and ensure that they translate into positive practical action by setting targets and measuring progress; • More funding. Consider increasing umbrella funding for brain research, which will undoubtedly positively effect Alzheimer’s funding; • We must focus on raising awareness as well as early intervention and treatment; • Hard Brexit would be damaging, we need UK expertise - 70% of our projects are led by UK research – We must have them on board to instigate effective change; • We cannot succeed working in silos. Coordination and cooperation between clinicians, local authorities and the public and private sectors is imperative. We must also allocate a significant focus on cross border and interdisciplinary
• A three-pronged approach is necessary to tackle Alzheimer’s disease effectively: Psychosocial preventative care and research, symptomatic care to manage and support individuals with Alzheimer’s, and the development of disease modification treatments. We must think about how to pullthrough promising innovations and drug treatments and get them through to patients in the national setting; • We must pursue new innovations in research but equally remember that we haven’t had a significant breakthrough on this in thirty years. We must, therefore, focus on what we know we can do. We can provide appropriate social care for dementia sufferers and allow individuals to ‘live better with dementia’. Policy makers must acknowledge and retain this balance between optimism and realism; • Half of people who find out they have a cognitive deficit do not seek further advice. The education component is vital. We must focus on pathways after diagnosis and create better linkages with social care systems; • We must improve the present and prepare for the future. In
the present, we must improve care-systems; focusing on the psychological aspects of dementia care and support caregivers more effectively. With regards to the future, we must explain to policy makers that there may be breakthroughs in the future. We must, therefore, continue to fund research; • Our GPs are overworked. Should they be able to deal with Alzheimer’s patients, it has to be more time effective. The waiting time for a neurologist in Slovenia, for example, is a year and a half. We either employ more, or make the diagnosis and treatment process more time effective; • 70% of all care is done within families. It is vital, therfore, that we emphasise the training and support of these caregivers. We must also emphasise the role of men in this capactiy; • Research is needed in how we support caregivers effectively. We must advocate a focus on the psycho-social implications of Alzheimer’s. We can do this by focusing on mental disorders more broadly as many mental disorders overlap such as Alzheimer’s and depression. • Education is key. We have made progress reducing the stigma surrounding the disease; however, we must continue to do
• We need to assess why the research done so far has not yielded more positive results. We must examine the failures and inefficiencies of previous research, and determine how to optimally utilize available funding to conduct research in a more efficient manner Delegates present at the iCPS Alzheimer’s Europe Roundtable included: President, Alzheimer Europe Board member, Ligue Alzheimer, Vice-President, Federal Chamber of Psychotherapists, MEP, Alzheimer’s Alliance, European Parliament, Policy Advisor, Flemish Government – Department of Economy, Science and Innovation, Director, Radboud University Nijmegen Medical Centre, Professor of Neurology, President, Academic Medical Centre, Health Council of the Netherlands, Head of Sector - Neuroscience, European Commission, DG Research & Innovation, Head of Neurology, Ljubljana University, Professor of Neurology, Director, University Salpêtrière Hospital, Institute for Memory and Alzheimer Disease, Policy Analyst, Organisation for Economic Co-operation and Development, Scientific Development Unit, European Commission, Joint Research Centre.
Government Gazette | 27
Fight against Alzheimer’s - Where are we now?
Paula BARBARINO CEO, Alzheimer’s Disease International
ADI’s action plan to fight Alzheimer’s disease Paola Barbarino, CEO, Alzheimer’s Disease International addressed the World Health Assembly on the eve of the adoption of the global plan on dementia in May 2017. This September, she is calling for governments to translate global action into local change
eptember is World Alzheimer’s Month, the global campaign led by Alzheimer’s Disease International and Alzheimer associations in over 90 countries to raise awareness of dementia. As part of the campaign this year, we are calling on all members of the public to recognise the symptoms and challenge the stigma associated with the disease. We are also asking governments to act by developing a tailored national response to the challenges posed by dementia care, science and research in their countries. In Europe, dementia affects over 10 million people; approximately
In 2018, dementia will become a trillion-dollar disease – costing the global economy more than heart disease or diabetes.
one in five people over the age of 80 or one in every 20 people over the age of 65. Diagnosed in approximately 50% of cases in high income countries, dementia is the only major chronic disease area without a cure. Increasing coverage of diagnosis, and quality care, is therefore essential. Faced with a rapidly ageing population, Europe must do more to provide equitable, accessible care for those affected, their families and care partners. In 2018, dementia will become a trillion-dollar disease – costing the global economy more than heart disease or diabetes. The World Alzheimer Report 2016 shows that strengthening the healthcare response to dementia, a key component of national plans, can reduce this cost by up to 40%. Increased attention to prevention of dementia through awareness of risks including inactivity, smoking and isolation can also lower the impact of
the condition, as well as help reducing the impact of other non-communicable diseases such as diabetes, heart disease and depression. Since 2005, there have been 30 national plans to address dementia. These contain guidance for raising awareness, training of health professionals and care partners, diagnosis and access to treatment, coordination of care and for research. The focus is of course on the individual needs of the population of each country. The global plan on dementia adopted by the World Health Organisation in 2017 echoes the message that more is needed, and includes a target for 145 plans by 2025. In Europe, dementia plans have been established in 16 out of 44 states and countries. Measured against the strategic priorities of the global plan in the 7 areas of public health prioritisation: awareness, risk reduction, diagnosis, support, information systems and research, most contain elements of just three of these. Those in the Netherlands, Norway and the UK (England and Scotland) are the only plans to address the important issue of research and innovation for improving understanding, care and treatment of dementia. In addition, ADI recommends that at least 1% of the societal cost of dementia in each country is invested into research. Plans must be effectively funded with a commitment to meet and monitor the targets set. In Scotland, the third national plan on dementia, published in June 2017, contains a chapter entitled ‘Where we are now’. I urge that other countries in Europe adopt a similar approach to ensure that plans, where implemented, are kept alive in both practice and planning.
www.governmentgazette.eu | 28
Mathew NORTON Director of Policy, Alzheimer’s Research UK
Achievements of these plans include significant steps forward in the realisation of dementia friendly communities and initiatives. Recognition of the rights and importance of including people living with dementia in the matters that affect them, including working rights, legal counsel and access to support, has led much of this process. There is much to look forward to. The adoption of a global plan opens the door of a new era for dementia in Europe. Policy makers and stakeholders, including Alzheimer associations and people living with dementia, can use this framework to demand that governments act. World Alzheimer’s Month is an exciting time to join the global campaign for this change. Join us on World Alzheimer’s Day, 21 September by asking what your government can do now to raise awareness and prioritise dementia
Governments must join hands with charities
oday, there are 850,000 people living with the condition in the UK – with thousands more loved ones left heartbroken by the destruction it causes. This may still come as a surprise to many, but dementia is the leading cause of death for women in the UK and second biggest killer of men. What makes this challenge even more urgent is the broader effect dementia has on a person’s ability to manage a range of other chronic health conditions, particularly in later life. There is also a huge financial cost – dementia costs the UK economy £26billion each year. As our population continues to age, and prevalence of dementia increases, these costs will only continue to rise. Even though this may seem like a frightening reality, we know that through the power of research we can defeat dementia. We are closer than ever before to discovering the breakthrough we desperately need – thanks to a muchneeded commitment to research and a renewed political focus in recent years. At Alzheimer’s Research UK, we’re working to bring about a life-changing treatment for dementia – but this will only happen if the momentum we’ve built continues. The last government propelled dementia into the spotlight, doubled investment in research and made the condition a national priority – and we’ve made significant progress since the first Prime Minister’s Dementia Challenge was launched in 2012. Recent analysis shows that
there are double the number of dementia researchers and scientific publications, compared to six years ago. While there is still only one dementia researcher for every four cancer researchers, that’s an improvement on the previous figure of one in six. Alongside this, the UK Dementia Research Institute has been established and is firmly underway, bringing together scientists from across the UK in a dedicated effort to defeat dementia. But lately it’s been a turbulent time in politics and there’s concern that without support, our progress could come to a grinding halt, particularly as Brexit negotiations start to dominate the agenda. In this uncertain political climate, we must hold our government to account and not let dementia fall by the wayside. Thanks to the advances made over the past few years, the foundations are in place to deliver the life-changing treatment we need. The UK Department of Health has promised to deliver the Challenge on Dementia 2020, and we were pleased when the Conservatives made another commitment to investing in dementia research in their manifesto. At the G8 dementia summit in 2013, the UK signed up to an ambition to find a disease-modifying treatment by 2025. If we are to achieve this vision, we need a long-term strategy taking us past 2020, as well as a commitment to activities that were started before the general election. This includes the government’s response to leading academic Sir John Bell’s Accelerated Access Review, which examined how to
speed up the way new medicines are made available. A series of recommendations were published at the end of last year and we are still waiting to hear whether the government will adopt these recommendations – a decision that will be important for getting future dementia treatments to those that need them. In January, proposals were unveiled for an Industrial Strategy that would include investment in life sciences as one of its 10 pillars. This provides an important opportunity to bolster UK dementia research, so it will be critical to get the detail of the plan right. Only through funding research and enabling collaborations will we be able to bring an end to the heartbreak caused by dementia. As we embark on Brexit negotiations, the government must ensure scientists don’t lose out on valuable funding, or find themselves unable to participate in crossborder collaborations. Similarly, we will be seeking assurances about the positions of talented scientists from the EU who are carrying out important dementia research in UK labs. In our lifetimes, we’ve seen incredible progress with other serious health conditions like cancer and HIV/Aids – dementia can no longer be the underdog. We are seeing reports that life expectancy is slowing for the first time in many years, and people are now living more of their later years in poorer health, because of conditions like dementia. Today, if we continue to build on recent progress, we have a fighting chance of defeating dementia and transforming the way this cruel condition impacts people for generations to come. Our government must stand with us in this fight
Government Gazette | 29
Joint agenda against Alzheimer’s
Hon. Dr Justyne CARUANA Minister for Gozo and former Minister for Mental Health, Malta
Malta’s proactive approach against Dementia
supports and accepts people with dementia as worthy members of society.
Malta recently collaborated with the European Commission to convene the EU Governmental Experts Group on Dementia to discuss current and future developments in dementia treatment and care. Hon. Dr Justyne Caruana MP, Minister for Gozo discusses the country’s policy challenges in managing the mindrobbing disease and offers policy recommendations for fellow EU member states
alta is the smallest country in the European Union and as with the rest of other European countries, it has a growing elderly population. With this comes the challenge of dementia which will inevitably place an enormous burden on our health and social care systems. There are over 6,000 individuals with dementia in Malta, equivalent to 1.5% of the Maltese population. This figure will increase to 3.5% by the year 2050. There is little doubt that dementia is seriously undermining the social and economic development globally as highlighted in the first WHO Ministerial Conference on Global Action Against Dementia in 2015. People with dementia, their caregivers and family members face a significant financial burden in terms of health and social care as well as loss of income. One of the biggest priorities for Europe in its fight against dementia should be to shrink the gap between the need for prevention, treatment and care and the actual provision of services that are needed for people with dementia and their caregivers. Dementia is under-diagnosed and long-term pathways are often fragmented or non-existent. Lack of understanding and awareness of dementia are often to blame leading to stigmatisation and barriers to diagnosis and care.
www.governmentgazette.eu | 30
People with dementia are frequently denied their human rights in both the community and long-term care settings. Malta took a proactive approach to tackle the challenge of dementia. In 2015, we launched our dementia strategy that focuses on a number of interventions aimed at improving the quality of life of individuals with dementia, their caregivers and family members. A number of initiatives have been launched including training programmes to formal staff, the opening of a new dementia activity centre in the sister island of Gozo, extension of the dementia helpline, the launch of the dementia intervention team and the piloting of a dementiafriendly village, amongst others. During our Presidency, Malta together with the Netherlands and Slovakia who held the preceding Presidencies for the Council of the European Union in 2016 signed a joint statement calling upon the European Commission to: - Promote and support international cooperation in dementia research and improve the coordination of existing European research programmes - Promote and support the exchange and implementation of best practices in dementia care, diagnosis and prevention - Promote and stimulate the development of a society that
There are over 6,000 individuals with dementia in Malta, equivalent to 1.5% of the Maltese population.
We also urged our fellow EUmember states to: - Promote, participate and support international cooperation in dementia research - Work together in the exchange and implementation of good practices in the field of dementia - Support individuals with dementia to have the best possible quality of life, to live with dignity, participate in society in accordance with their human rights and accept them as worthy members of society - Support patient advocacy by national and international Alzheimer organisations. As part of its programme of its Presidency of the European Union, Malta also collaborated with DG SANTE of the European Commission to convene the EU Governmental Experts Group on Dementia in Malta in May to discuss current
and future developments in dementia including the fostering of further collaboration in dementia across all EU-member states in order to be better prepared to face the dementia challenge. This meeting included a tour de table of national health ministry representatives from twenty European countries presenting their latest national initiatives in the dementia field. The meeting was also an opportunity for the national representatives to be updated about the progress of the European Union Joint Action on Dementia and its focus on timely diagnosis and post-diagnostic support, care coordination, residential care and dementia-friendly communities, as well as about other international efforts by the World Health Organisation and its global action plan on dementia and global dementia observatory and by the Organisation for Economic Cooperation and Development and its work on care indicators in dementia. A side event of the Experts’ Group meeting was a visit by the EU Presidency Trio representatives to Gozo to demonstrate the effective and holistic approach towards dementia friendly communities. Apart from the European dimension, Malta believes in a coordinated global approach to dementia. We co-sponsored a side event about dementia in Geneva in 2016 during the 69th World Health Assembly organised by the World Health Organisation. Furthermore, we have actively encouraged and supported the drafting of the WHO Global Action on Dementia that aims to encourage nations to truly commit themselves towards working out a comprehensive and holistic approach to dementia
Heinz BECKER mep
Member of EPP Group at the European Parliament
Now is the right time for political action across the EU
pproximately 6.4 million people are living with dementia in the European Union and every year 1.4 million Europeans develop some form of dementia. These numbers are expected to rise quickly in the next four decades. Alzheimer’s disease, a special form of dementia, is one of the most pressing public health challenges in Europe. A majority of European citizens will have to cope with this disease during their lifetime, either as patient or as carer in their families, as caregivers and as the whole society. We will all be deeply affected by this disease. Hence, this disease comes with substantial social and economic implications for every European!
Recent promising studies presented at the ICPS Alzheimer Europe Roundtable in Brussels have shown that improved cardiovascular conditions and higher education levels can lead to a reduction in national dementia cases. Furthermore, there is great potential that biomarker-technics could lead to early detection from 40 years on.
First of all, we must not forget those of us who are dealing with this disease every day. Alzheimer’s Disease often leads to stigma, discrimination and isolation. It is of utmost importance to protect their human rights as patients and carers and to raise awareness in society as a whole. In particular, we have to focus on the elderly, who are highly endangered to develop some form of dementia as the major cause of disability and dependency. We must not accept Alzheimer’s Disease as a normal part of ageing!
We need public campaigns run by the governments of all EU member states - as it is not the EU’s but national legislative competence - not only to raise awareness about the disease, but also to foster research developments and to consequently establish best practice in treatment by focussed risk reduction, early diagnosis as well as timely intervention.
Never miss the present chances In order to consequently combat Alzheimer’s impacts on our society and at the same time to support the new medical and pharmaceutical scientific developments, we have to focus on the priorities and we have to be fast.
This means prevention and early diagnosis are the main keys. Thanks to intense scientific research on Alzheimer’s Disease, there is a high probability that we will be able to combat Alzheimer Diseases more efficiently in future. Governments of EUmember states have high responsibilities
It is our national governments’ responsibility to continue building a “dementia-friendly” Europe by ending stigma, discrimination and isolation of patients and carers, and adapting and developing a responsive and inclusive environment.
accountable and increase the pressure on all those among the EU 28 who have not yet created a National Alzheimer Strategy. As next steps in terms of policy action on European level, I want to follow up two specific ones: 1. An “Alzheimer EUCoordinator” should be installed to synchronise the various activities in the different DGs of the European Commission, reaching from Health to Research, Innovation and Care. 2. An EU-framework should be built in order to pool the expertise and efforts in Europe and to strategise on how to provide the best and most costeffective services that adequately meet the needs of individuals and families who suffer in Europe. Now is the time to act. Combating Alzheimer’s Disease and other types of dementia has to become a top priority of the European Union by putting further emphasis on cooperation within all member states in areas of research, care and prevention. Fully supporting Alzheimer Europe on their ambitious way, I am absolutely determined to set next steps still in 2017 to follow up our mutual goals together with other members over all political groups in the European Parliament
To reach this goal on a European level, all European institutions, especially the European Commission and European Parliament, have to hold national governments Government Gazette | 31
Joint agenda against Alzheimer’s
Keith TAYLOR mep Vice Chair, European Alzheimer Alliance, Member of the Green Group at European Parliament
Air pollution and Alzheimer’s disease The link between air pollution and dementia remains controversial, but evidence slowly builds that dirty air might cause Alzheimer’s. As a growing number of epidemiological studies have raised alarms, Keith Taylor MEP, Vice Chair of the European Alzheimer Alliance, notes that the exploration of any such link should be made a priotity for policymakers and researchers alike
n Britain, poor air quality is linked to 40,000 deaths every year; it’s a public health crisis that runs up a bill of almost £30bn annually – paid for from the taxpayers’ pocket. The biggest source of the two main types of air pollutants is road transport, accounting for 31% of nitrogen oxides (NOx), 18% of PM10 and 19.5% of PM2.5 emissions in the UK - particles less than or equal to 10 micrometres and 2.5 micrometres in diameter, respectively. At urban monitoring sites, road traffic accounts for more than 64% of air pollution. The headline figures are both stark and vital for illustrating the scale of an issue that has encouraged only apathy from a Conservative government whose latest air quality plan has been found wanting – yet again. But the big numbers obscure some of the lesser known impacts of the air pollution crisis. From children to the elderly, from those suffering with respiratory and heart diseases to the disproportionate effects on the poorest residents and those least responsible for contributing to the problem, the myriad ramifications of toxic air are often underreported – people prefer the simplicity of big numbers. Hidden yet further beneath
www.governmentgazette.eu | 32
those marquee statistics, however, is a burgeoning area of air quality research exploring a possible link between air pollution and Alzheimer’s disease. Alzheimer’s is a progressive brain disease that eventually strips sufferers of their ability to remember, communicate and live independently. It currently affects almost a million people in the UK and is the most common type of dementia. More than 200,000 people will develop Alzheimer’s this year, that’s one every three minutes. The cost of dementia in the UK has risen to more than £25bn a year. People living with the disease and their families shoulder two-thirds of the burden while unpaid carers do the equivalent of £11bn worth of work every year. Alzheimer’s disease and dementia is the leading cause of death for women in England and the second biggest cause of death for men. There is no cure for Alzheimer’s disease or any other type of dementia. However, delaying the onset of dementia by five years would halve the number of deaths from the condition and save 30,000 lives a year. As a member of both the
Urgent and bold action on air pollution will, at best, help prevent thousands from developing Alzheimer’s disease while reducing both the unnecessary premature deaths of 40,000 Britons and the associated public health bill.
European Parliament’s Public Health and Transport committees and vice chair of the European Alzheimer’s Alliance, it is clear to me the exploration of any link between air pollution and Alzheimer’s should be a priority for policymakers and researchers alike. The latest research published earlier this year finds particulate pollution (PM2.5), the tiny ‘dust’ particles less than the width of a hair produced from vehicle breaking, grinding operations, and as a byproduct of combustion that penetrate deep into the human body, can nearly double the risk of women aged 65 to 79 years developing Alzheimer’s. The research by academics at the University of Southern California is the first of its kind to demonstrate that air pollution interacts with a so-called ‘Alzheimer’s risk’ gene - APOE4 - to accelerate brain ageing. The University of Southern California research is not the first, however, to reveal a link between particulate air pollution, cognitive ageing and Alzheimer’s. Researchers at the University of Toronto, also earlier this year, reported in perhaps the most respected medical journal, The Lancet, that among the 6.6 million inhabitants of Ontario, those living within 50m of a major road were 12% more likely to develop dementia than those living more than 200m away - the difference in particulate pollution levels at these distances can be tenfold. While, in 2017, academics and researchers are at the cutting edge, the origins of the field can be traced back to 2008 when a study in Mexico found a correlation between the neurodegeneration in dogs - and the presence of amyloid, a protein linked to Alzheimer’s - and the levels of air pollution in Mexico City. The neuroscientist leading the study, Lilian Calderón-Garcidueñas, also found a similar pattern of neurodegeneration in children and young adults. However, CalderónGarcidueñas’s studies didn’t have rigorous controls or account for the fact that the presence of
amyloid, although linked with the disease, doesn’t necessarily signal Alzheimer’s. Another study conducted in Mexico and the UK last year found magnetite – a potentially toxic particulate byproduct of traffic pollution – in samples of brain tissue from 29 people from Mexico and eight from Manchester. The analysis suggested Magnetite may increase molecular level damage to brain cells, especially in the presence of the same key protein linked to Alzheimer’s disease. However, none of the people studied had Alzheimer’s and only a handful had suffered from a neurodegenerative disease. It is important to be clear that no study has yet to establish how particulate matter pollution might enter the brain or exactly how it causes mischief while there. Based on the research so far, scientists and healthcare professionals have been cautious not to make any conclusive proclamations about a causal link between air pollution and Alzheimer’s. But the studies, while yet to be definitive, do provide an emerging picture of particulate pollution as a plausible risk factor in the development of Alzheimer’s. The EU precautionary principle mandates: action should be taken to mitigate plausible risks until they are proven not to be risks at all. By sticking to it, the UK Government could ease the parallel air quality and social care crises, for which they’re responsible. Urgent and bold action on air pollution will, at best, help prevent thousands from developing Alzheimer’s disease while reducing both the unnecessary premature deaths of 40,000 Britons and the associated public health bill. At worst, it will just help prevent tens of thousands of unnecessary deaths and save the British taxpayer almost £30bn a year. It’s a win-win situation. It begs the question then: why is the Government still displaying such a shocking disregard for the UK’s legal and moral obligation to take action on air pollution?
Government Gazette | 33
Joint agenda against Alzheimer’s
Maureen WATT msp Scottish Minister for Mental Health
The Scottish model of post-diagnostic support Scotland’s national dementia strategy continues to focus on diagnosis, post-diagnostic support and care co-ordination in the community, whilst looking at support for people with advanced dementia. Maureen Watt MSP, Scottish Minister for Mential Health, details the Scottish action plan
he Scottish Government has maintained a focus on dementia since 2007. We have had two national strategies so far, and in June we published the third Scottish Dementia Strategy, for 20172020. There has been significant progress in many aspects of dementia care in that time, including improved diagnosis rates and data, the introduction of the human-rights based Standards of Care for Dementia in Scotland; a national dementia workforce training and education framework, Promoting Excellence, and an improvement programme led by the Focus on Dementia Team at Healthcare Improvement Scotland. During the last three years we have focused on making sure that people with dementia get the care, treatment and support they are entitled to in all care settings, at all ages and at all stages of their illness.
they can take as active a part as possible, and have as much control and choice as they want in the process. To make that happen, we want to make more progress in getting more people diagnosed earlier.
During the next phase of our national work and the third dementia strategy we will build on the progress which has already been made in transforming services and outcomes for people with dementia and their carers. We will continue our focus on diagnosis and post-diagnostic support. The optimum model of post-diagnostic support is one where the person with dementia is diagnosed early enough that
For that reason, we are testing the re-location of post-diagnostic services into modern primary care settings, with the aim that this will make post-diagnostic dementia services more accessible, thereby encouraging more people to come forward earlier for a dementia diagnosis or for a memory assessment, in a setting where the appropriate post-diagnostic support services are on hand to respond to the
www.governmentgazette.eu | 34
individual’s needs. Our national priorities on dementia are informed by continuing to listen to people with dementia, their family carers and the professionals working with them. Their stories have helped us to clearly identify our key priorities on post diagnostic support, integrated home care and palliative and end of life care. We legislated to integrate health and social care in 2014. Integrated home care is essential in order to enable people with more advanced symptoms of dementia to live, not only safely, but with a good quality of life in their own home
for as long as possible – and with families and carers who feel supported in their key caring role. Our approach to integration is focused on personcentred planning and delivery, bringing together services and professionals to ensure that an integrated, holistic, person-centred experience will improve the whole system, the whole pathway of care, and the wellbeing of the whole person, along with initiatives to make Scotland a more dementia friendly country. Improving the care of people with dementia in general hospitals and in specialist NHS dementia settings also remains
a key part of national dementia policy. We will also have a significantly enhanced focus on palliative and end of life care for people with dementia, with the overall aim that by 2021 everyone with dementia has access to highquality palliative and end of life care, based on the principles of early planning and services working holistically with people with dementia and their loved ones, to reflect their wishes in the care provided. More than 500 people took part in a series of National Dementia Dialogue Engagement Events between 2015 and 2016, to help inform the development of this new strategy. We have worked with experts from a range of organisations including Alzheimer Scotland, the Convention of Scottish Local Authorities ( CoSLA), Healthcare Improvement Scotland, the Alliance, Scottish Care, the Scottish Social Services Council, NHS Education for Scotland, the Care Inspectorate, Integrated Joint Boards, academics and people with dementia and their carers to develop the new dementia strategy to ensure that people get the right care, in the right place, at the right time. We are now also coordinating the second European Joint Action on Dementia- the key areas of focus for the Joint Action are diagnosis and postdiagnostic support, crisis and care co-ordination, residential care and dementia-friendly communities, so there are clear areas of common interest between the development of dementia policy in Scotland and the wider picture in Europe. At the end of last year, the Scottish Government also presented to the Council of Europe Presidency Event and the European Expert Advisory Group on Dementia in Bratislava. We are exploring further opportunities to address other such gatherings of experts as the joint action continues its progress with the aim of promoting the implementation in Member States of coordinated actions to improve the situation of people living with dementia and their carers
Nessa CHILDERS mep Member of the European Parliament
Assessing the current state of care in Europe
new report from Alzheimer Europe highlights the existing inequalities in access to dementia care and treatment across Europe. The report the “European Dementia Monitor” assesses which countries provide the most dementia-friendly policies and guarantee the best support and treatment of people with dementia and their carers.
In 2030 it is predicted there will be 13.42 million people in Europe living with dementia. (2) The cost per person with dementia was about EUR 22,000 per year, while it was somewhat lower for the wider EU sphere and for the whole of Europe. The total societal costs per case were estimated to be 8 times more in Northern Europe than in Eastern Europe.(3)
Twenty years ago there was little recognition that Dementia constituted a public health challenge. Dementia is a major cause of disability and dependency among older people worldwide, having a significant impact not only on individuals but also carers, families, communities and societies.
For the reasons above Alzheimer Europe surveyed its national associations on the current
Dementia is known to be more prevalent in an ageing population and by 2060 28% of the population will be aged over 65 and 12% aged over 80. (1) As Europe’s population ages there will be an increase in age related diseases and one of the most prevalent of these is dementia.
Finland scored highest on care availability and affordability since it provided the most care services and ensured that these services were accessible to all.
state of care treatment research policies and law in the field of Alzheimer’s disease in order to identify differences between countries as well as common trends and potential good practices and existing trends. The new report provides a benchmark of national dementia policies which compares and rates the responses of European countries to the dementia challenge. The survey covered all Member States of the European Union (with the exception of Estonia), plus Albania, Bosnia & Herzegovina, Jersey, Israel, Monaco, Norway, Switzerland and Turkey. The European Dementia Monitor compares countries on 10 different categories including availability of care services, affordability of care services, reimbursement of medicine, availability of clinical trials, involvement of the country in European dementia research initiatives, recognition of dementia as a priority, development of dementiafriendly initiatives, recognition of legal rights, ratification of International and European human rights treaties, care and employment rights. According to the findings of the European Dementia Monitor, no country excelled in all ten categories and there were significant differences between European countries. Key findings include: • Finland scored highest on care availability and affordability since it provided the most care services and ensured that these services were accessible and affordable for people with dementia and their carers Government Gazette | 35
Plan to reverse the cognitive decline
Head of OECD’s Health Division
• On treatment, Belgium, Ireland, Sweden and the United Kingdom (both England and Scotland) came first, as all anti-dementia treatments were fully reimbursed and the countries had a policy in place to limit the inappropriate use of antipsychotics. • Germany, France and Spain scored highest in the clinical trial category, as it was possible for people with dementia to take part in all nine phase III clinical trials currently being conducted in Europe. • Italy was the country that was the most committed to and active in European dementia research collaborations. • Ireland and Norway came first in the recognition of dementia as a national policy and research priority. • Finland, the Netherlands and the United Kingdom (England) had the most inclusive and dementia-friendly initiatives and communities. • Germany, France, Israel, the Netherlands, Slovenia and the United Kingdom (England and Scotland) complied with Alzheimer Europe’s four recommendations with regard to respecting the legal rights of people with dementia and their carers. • Finland and Norway had ratified the most International and European human rights conventions. • Ireland came first with regard to the care and employment rights which are recognised. On the basis of the findings www.governmentgazette.eu | 36
in the 10 identified categories, Alzheimer Europe established a ranking of countries (with each domain contributing 10% to the overall score) with Finland coming first with an overall score of 75.2% followed by the United Kingdom (England) (72.4%), the Netherlands (71.2%), Germany (69.4%) and the United Kingdom (Scotland) (68.8%). There is still a clear East/West divide in Europe with most of the Western and Northern European countries scoring significantly higher than Eastern European countries. As a rule, countries with national dementia strategies scored better in all categories. It is time therefore that all European countries and in particular those in Eastern Europe recognise dementia as a national priority and develop national dementia strategies References: 1. The 2015 Ageing Report, Underlying Assumptions and Projection Methodologies, European Commission, DG Economic and Financial Affairs, European Economy 8|2014 2. http://www.alz.co.uk/ sites/default/files/pdfs/ world-alzheimer-report-2015executive-summary-english.pdf 3. Wimo A et al. Regional/ National cost of illness estimates. Available at http:// www.alzheimer-europe.org/ Our-Research/EuropeanCollaboration-on-Dementia/ Cost-of-dementia/RegionalNational-cost-of-illnessestimates Last accessed 20 March 2014
Facing up to dementia requires doing things differently
Dementia imposes a tremendous burden on individuals, families, communities, and societies. It currently affects more than 47 million people worldwide, and this figure is expected to rise to 75.6 million by 2030. Francesca Colombo, Head of OECD’s Health Division and Elina Suzuki, Health Policy Analyst at OECD note that better dementia care and a future cure require urgent action today
lder people fear Alzheimer’s and other dementias more than cancer. The numbers justify their concerns. A new case of dementia develops nearly every three seconds. Some 47 million people were living with dementia in 2015, including over 17 million in OECD countries. The prevalence of dementia is strongly linked with age: just over 1% of people aged 60-64 in the OECD area are affected, but this shoots to more than 40% for those over 90 (Figure 1). With the number of people over 80 years old set to at least double by 2050 across OECD countries, the number of individuals living with dementia will also more than double in the OECD, and more than triple in low-income countries. More than 131 million people across the world are expected to be living with dementia by then. Billions of dollars have been spent on research, but a cure has yet to be
found. Between 2002 and 2012, almost the totality of drugs for Alzheimer’s disease (which represents 60-80 per cent of dementia cases) assessed in clinical trials in the United States failed. Recent late-stage clinical trial failures, such as Eli Lilly’s solanezumab and Merck’s verubecestat, reflect the uphill battle researchers face in finding a cure or even symptommodifying treatment for a complex disease that is believed to develop decades before symptoms emerge. Efforts must continue to give signals to the pharmaceutical industry that we want them to continue efforts in this direction despite the setbacks, including through publicprivate risk sharing mechanisms, the application of real world evidence, and modernisation of governance and regulatory science systems. But without the prospect of breakthrough treatments in the near future, governments must ensure that people living with
dementia receive high-quality care that enables them to live with dignity and autonomy. Dementia places an enormous strain on people who develop the disease, but also their family and carers. Across 21 OECD countries, more than one in eight people aged 50 or above are informal carers, many for people with Alzheimer’s disease and many are themselves elderly. Caregivers are often overwhelmed by the burden of caring for a loved one. Highintensity carers are more likely to be poor, to give up their job and to experience mental health troubles. Social and health systems in place to support people with dementia and their families are under increased pressure, too. The need to respond to higher demand for services and to deliver high-quality care comes at a time when government budgets are strained. Health and social care spending growth today remains below pre-crisis rates. In contrast to the years leading up to the economic crisis, when growth in health spending strongly outpaced that in the rest of the economy, it has tended to follow economic growth more closely since 2013. Facing up to this challenge requires doing things differently. A clear priority is to raise quality standards, beginning with diagnosis. In too many countries, more than half of those with dementia are undiagnosed, preventing timely access to needed health and social care services.
Without breakthrouh treatments, governments must ensure that people living with dementia receive highquality care that enables them to live with dignity and autonomy.
Awareness of the disease often remains insufficient, even among healthcare professionals, and post-diagnostic support is often ad-hoc or unavailable. Making matters worse, health and social care systems often operate in silos, unnecessarily complicating access to care for people with dementia. Encouraging ageing in the community for as long as possible is key. A number of countries – including the United Kingdom and Japan – have in recent years launched dementiafriendly initiatives that make it easier for people with dementia and their carers to participate in their communities. More can be done to develop support
services, including Alzheimer’s cafes, workplace protection, respite care, and training and counselling services. Policies can help carers reconcile their job with caring duties through more choice and flexibility about care leave and working hours, for example. People with dementia still end up in institutions too often, and efforts to eliminate inappropriate care must continue. Across OECD countries, one in every ten people aged 85 and over is treated with antipsychotic medications – often to control difficult behaviour resulting from dementia – even though behavioural and psychological symptoms of dementia can often be addressed with nonpharmacological interventions. The quality of care in hospitals can be improved, too, avoiding people with dementia leaving the hospital doing more poorly than when they arrived. In recent years, dementia has been placed higher on the political agenda as governments across the world recognise the scale of the challenge. The first G8 summit on dementia, hosted by then Prime Minister Cameron in 2013, created international momentum. This May, the World Health Assembly endorsed the Global Action Plan on the Public Health Response to Dementia. The OECD supported the first WHO Ministerial Conference on Global Action Against Dementia in 2015 and is furthering work with countries to improve benchmarking of dementia care and outcomes. The OECD also provides advice to the World Dementia Council and has partnered with the Swiss government, Alzheimer’s Disease International and the Global CEO Initiative on Alzheimer’s Disease to drive innovation in Alzheimer’s disease. These developments are an encouraging sign that countries are stepping up to the challenge. They raise hopes for successfully transforming how dementia is viewed and addressed in the future
deals blow to US drugmaker Eli Lilly. Financial Times. https:// www.ft.com/content/972f829cb171-11e6-a37c-f4a01f1b0fa1. 2. Cummings, J.L., Morstorf, T., & Zhong, K. (2014). Alzheimer’s disease drugdevelopment pipeline: few candidates, frequent failures. Alzheimer’s Research & Therapy, 6:37. 3. Hawkes, N. (2017). Merck ends trial of potential Alzheimer’s drug verubecestat. BMJ, 356:j845. 4. OECD (2011), Help Wanted – Providing and Paying for Long Term Care. OECD Health Policy Studies, OECD Publishing, Paris, http://dx.doi. org/10.1787/9789264097759en 5. OECD (2014). A Good Life in Old Age. OECD Health Policy Studies, OECD Publishing, Paris, http://dx.doi. org/10.1787/9789264194564en 6. OECD (2015). Addressing Dementia: The OECD Response. OECD Health Policy Studies, OECD Publishing, Paris. http://dx.doi. org/10.1787/9789264231726en 7. Prince, M. et al. (2016). World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia, Alzheimer’s Disease International. 8. The Telegraph (4 August 2014). Older people are more scared of dementia than cancer, poll finds. http://www. telegraph.co.uk/news/health/ elder/11008905/Older-peopleare-more-scared-of-dementiathan-cancer-poll-finds.html 9. World Health Organization (29 May 2017). Seventieth World Health Assembly update, 29 May 2017 [press release]. http://www.who.int/ mediacentre/news/releases/2017/ dementia-immunizationrefuguees/en/.
References: 1. Crow, D. (23 November 2016). Alzheimer’s drug failure Government Gazette | 37
Plan to reverse the cognitive decline
Kathleen D’HONDT Policy Advisor, Dept of Economy, Science and Innovation, Flemish Government
Solving the dementia challenge
he Alzheimer’s Europe Roundtable organised by the International Centre for Parliamentary Studies to prepare for a renewed engagement to deal with Alzheimer’s disease and move from care to cure, has helped reflect on the best way forward. The enormous burden imposed by dementia on the society as a whole and at personal level, has been increasing over the years. The burden, especially at the emotional level, for the closest relatives and caregivers is even huge. Annual, national and international dementia awareness days or actions and the special focus on neurodegenerative diseases by several countries across Europe have raised the level of awareness about dementia. The Alzheimer Paris declaration of 2006 stays largely valid, but the focus should be expanded to include other dementias. Several issues related to dementias are indeed generic. Further, diagnosis should enable us to clearly differentiate between the different dementias, especially as early detection is crucial for successful interventions in delaying the onset of the diseases. Since the Paris declaration, a lot of actions have been developed across the EU. National and regional dementia roadmaps or strategies have been developed to provide better care and supporting actions for patients, their families and care givers. It remains, however, hard to get an overview of the different national programmes and strategies and best care practices from other countries and regions. www.governmentgazette.eu | 38
One of the fundamental shortcomings in some national and regional strategies is that they are often non-committal. In addition, the integration of different policy domains, such as public health, wellbeing, research, innovation, regulatory issues and education may be enhanced. Too often, the different policy domains function independently, thereby leading to fragmented efforts. The different kinds of dementias pose multifaceted challenges, which require niche solutions. Patient organisations should play an important role in policymaking. First of all, there is a need to get an overview of the different national and regional organisations and how they may be interlinked with European or international organisations. In some countries there are a few competing NGOs focussing on Alzheimer’s disease, Parkinson’s disease or dementia in general. Some of these organisations focus on providing information and care while others aim to support research as well. Most of them organise annual fund raising programmes to finance their activities and/or provide budgets for research. Instead of spending these funds to support national or regional research, joining the different funds could create a very significant patients’ fund for strategic research purposes. Patient organisations funding collaborative research could induce a more significant impact of an initiative like the Joint Programming Initiative on Neurodegenerative Diseases (JPND). JPND is mobilising significant national research budgets and has an impressive scientific board that identified
the research priorities in neurodegenerative diseases. However, the JPND research budget is composed of budgets made available from national and regional research funding organisations, which want their contribution to support participation of their national or regional stakeholders. Although this approach has proven successful so far, the fragmented budgets fail to enable big projects. Finally, a renewed European engagement to address neurodegenerative diseases should emphasise more strongly on the regulatory and ethical issues related to early diagnosis. There are indications that treatment started in a presymptomatic stage of Alzheimer’s disease is crucial to delay the disease. However, developments in early diagnosis open a new discussion on how health and disease are defined and when
A renewed European engagement to address neodegenerative diseases should emphasise more strongly on the regulatory and ethical issues related to early diagnosis.
to start treatment as part of preventive medicine. It may be difficult to get preventive treatments reimbursed; especially as such treatments will need to be sustained over extended periods. However, not treating may be more expensive to society and raises serious ethical considerations. Regulatory and ethical issues should be addressed at the European level. Early diagnosis and stratification of the population is needed to prove that the onset of Alzheimer’s disease can be delayed by pre-symptomatic treatment. Without a validated treatment available, currently there is a hesitation to establish large population screenings as the presence of predictive biomarkers may lead to stigmatisation. Nevertheless, in many cases, people are willing to participate in screening programmes. In any case, there is a shift in the mindset. While the stigma of being diagnosed with Alzheimer’s disease led to feelings of embarrassment and isolation, support and patient-friendly environments are being installed at least in some communities. However, population screening will be essential to move from care to cure and a principle of the right to know and right not to know should be explicit, as should be the guarantees on confidentiality of the data. It is essential however that the statistics related to the presence of biomarkers and association of increased risk are well understood.
In this respect and to deal with several of the above issues, a European platform to provide patients and carers with scientific updates and information on the different types of neurodegenerative diseases is necessary and this should be made available in all European languages Such a platform will give an overview of the different national and regional roadmaps to address the challenges related to dementias. It could also be an instrument to exchange best practices and creative ideas to improve treatment and care of Alzheimer’s disease in Europe. Similarly, the different patient organisations should find a forum to share ideas across borders
President, France Alzheimer
France Alzheimer’s strategy to fight the disease
ith over 900,000 cases in France, the care of people suffering from Alzheimer’s disease or related disorders has become a major public health concern. Not just for today, but also for tomorrow. It is important to keep in mind that, 8 years from now, 1 in 4 French individuals aged 65 and older will be affected by one of these pathologies (Alzheimer’s disease, Dementia with Lewy Bodies, vascular dementia, frontotemporal dementia). France Alzheimer will be focusing on six major challenges in the near future: changing attitudes towards the disease, promoting early diagnosis, optimising care plans, supporting and advocating for caregivers, reducing the costs of the disease and advancing scientific research. As of today, Alzheimer’s disease and related disorders often suffer from a wrong or negative image. In order to change the way the public think, we encourage any measure promoting the social inclusion of the individuals affected by these diseases. We also wish to launch a wide communication campaign at a national scale in order to deconstruct the numerous and common stereotypes. To this end, one of France Alzheimer’s main missions is raising the public and the health professionals’ awareness about the necessity to initiate the diagnosis as soon as the first symptoms occur. Meanwhile, other measures must be taken to improve the access to diagnosis, the way the diagnosis is announced, as well
as the redirection of the patients towards the existing assistance and support structures. In order to offer a personalised care plan to each patient, our association encourages the authorities to develop training and specialised programs for the professionals. We also urge them to take into consideration the patients’ specific needs, depending on several factors such as age, the stage of the disease, personal history, social, family or emotional environment, etc. Since its creation, France Alzheimer has always fought for a greater acknowledgement of the caregivers’ rights. Because when one is touched by these diseases, their whole family needs help. Today, we specifically ask for some solutions for respite to be developed all over France. In the face of the costs of the disease, mostly borne by the families, France Alzheimer reaffirms the urgency of finding new ways to finance the loss of autonomy. It is urgent to reduce what is currently being paid by the patients and their families.
clinical research and human and social sciences. The financial means allocated to scientific research and its development still are too limited. France Alzheimer also calls for an easier access to therapeutic innovation, especially by promoting the patients’ participation in scientific research. It is high time we start considering the amounts spent to fight against Alzheimer’s disease (and related disorders), in France but also in Europe, as an investment in the future and not as a cost. In the absence of significant measures, financed by significant means, the amount of people affected by these diseases will keep growing, and so will the costs borne by us all. In order to stop this plague, the rallying of authorities, researchers, families, health professionals, associations in France and Europe, is essential
Lastly, the research has benefited from the surge of solidarity generated by the Alzheimer plan launched between 2008 and 2012. This impulsion enabled the French teams working in this field to publish more, and to integrate the French research in the European ecosystem (ALCOVE project, JPND program). The research in genetics and medical imaging widely benefited from this momentum. Today, we must continue and amplify our efforts in favour of Government Gazette | 39
Joint agenda against Alzheimer’s
Colin CAPPER Head of Research Development, Alzheimer’s Society
Addressing Alzheimer’s funding challenge
ementia is one of the biggest health challenges facing society today. There are currently more than 10 million people with dementia in Europe. This figure is set to rise by 28% by 2030 and by 78% by 2050. Despite still being dramatically underfunded in comparison to research for other health conditions, dementia research is receiving increasing global attention. Last year, Alzheimer’s Society and Alzheimer’s Research UK each invested £50 million in a new UK Dementia Research Institute, demonstrating their determination to find better treatments and a cure for dementia. In July, the US Alzheimer’s Association announced a $20 million investment in a study to reduce dementia risk. But with no new treatments in the past decade and an ever-growing number of people affected, better dementia care should be recognised as an immediate priority. People with dementia are the biggest users of social care, so investing money in ways to improve the quality of support they receive from the start of the care pathway can directly improve their quality of life. We know most people with dementia want to remain in their own home for as long as possible. Better post-diagnostic support and care at home can empower people to remain independent for longer, minimise unnecessary hospital admissions and help avoid early entry to care homes. Despite this, care research still comprises a minority of the dementia research landscape.
www.governmentgazette.eu | 40
people in a particular area. The model presents high employee and patient satisfaction levels and seems to reduce the number of hours of care a person requires. The organisation’s flat management structure offers nurses a flexible working approach and keeps costs low, meaning the service is affordable. It estimates overhead costs at 8%, whereas the United Kingdom Homecare Association suggests homecare providers in the UK need up to 30% to cover overheads.
To tackle this challenge, Alzheimer’s Society is funding three care research Centres of Excellence with £2m each over the next five years. Focusing on ways to measure and improve quality of life, access to post-diagnostic support and homecare, the interventions developed by each of these programmes could have lifealtering implications for people. By working in collaboration with people affected by dementia, NHS trusts, care providers and primary care services, we are developing interventions that are evidenced, cost-effective and scalable. But not all improvements need to come from new research. We can take lessons in good practice from successful care models across the globe and replicate them in our own communities. The Buurtzorg model of social care, created in the Netherlands, has grown to now be replicated in the USA, Sweden and Japan. Buurtzorg
demonstrates an excellent model of person-centred care, where individualised care plans incorporate a person’s health needs as well as their care and personal needs. Self-governing teams of highly trained nurses take responsibility for the homecare of a large group of
People with dementia are the biggest users of social care, so investing money in ways to improve the quality of support they receive from the start of the care pathway can directly improve their quality of life.
While these models of good practice demonstrate that good care is achievable and affordable, they are operating autonomously. Alzheimer’s Society is paving the way to developing a longer-term solution in the UK. However, the cruel paradox is that even with more evidence-based research demonstrating how to improve care and without changes to the current system, there will not be adequate funding to implement these learnings. Dementia is a global issue that requires a global solution. We need to communicate and cooperate to provide the best possible interventions for people with dementia. Countries around the world must unite against dementia, to create a future without this devastating condition Alzheimer’s Society is asking everyone around the world to Unite Against Dementia. To find out more or to make a donation, visit www.alzheimers. org.uk.
Alzheimer’s disease and the search for new medicines
ith a rapidly ageing population, Alzheimer’s disease (AD) is a growing public health concern worldwide. In Europe, an estimated 10.5 million people have dementia, and this number is expected to increase to 18.7 million in 2050. In approximately 60 to 80 percent of people with dementia AD is the underlying cause. AD is a progressive neurodegenerative disease characterised by a decline of memory, thinking, behaviour and the ability to perform everyday activities. Ultimately, these impairments lead to a loss of independence and an increasing need for support by others up to full-time care as the disease progresses, inevitably leading to death. AD is a continuum and progresses in stages with a long silent phase starting before its symptoms appear. In Europe, rates of diagnosis remain low, and when diagnosis occurs it is typically at a relatively late stage in the disease progression. In addition to the economic costs (direct and indirect), people with Alzheimer’s and families caring for someone with AD may experience increased stress and anxiety as well as stigma and fear of the disease as there is no cure. However, recent advances have provided new hope. Future Outlook In the last decade, despite some key clinical study failures, the AD community has made
significant advances in the scientific understanding of the disease, laying the basis for promising new medicines that may one day delay the progression of AD. Advances in biomarkers and neuroimaging have shown that the disease pathology begins well before the onset of the symptoms commonly associated with AD like memory loss. The plaques, made up of betaamyloid protein, and tangles of tau protein, accumulate in the brain over the course of 10 to 20 years. New biomarkers, such as CSF analysis and PET brain imaging can detect abnormal levels of amyloid and tau and support an earlier diagnosis of AD. Today, a number of potentially transformative AD treatments are on the horizon. These disease modifying treatments (DMTs) will not cure AD but have the potential to slow the progression of the disease. It is believed these potential treatments will be most effective in the “Mild Cognitive Impairment (MCI) due to AD” or “Mild AD” stages, when symptoms are not currently noticed or are dismissed as normal ageing. The eventual introduction of DMTs requires a paradigm shift in health policy that provides equal consideration of timely diagnosis and treatment as well as prevention and the longterm care for people with AD. By diagnosing AD earlier in the disease pathway, it may be possible to help preserve
brain function or delay the development of more advanced AD. Patients, carers and society would benefit from earlier intervention in a number of ways: it would improve the outlook of patients and carers whilst helping reduce the costs associated with informal care and long term institutional care. Policy will play a crucial role in making this happen. We recognise the societal impact, policy challenges, and health
We are committed to working with all relevant stakeholders to prepare for a new era of treatment and to help support health systems to achieve the full benefit of scientific advances in Alzheimer’s disease.
system changes that a new medicine for AD may bring. We are committed to working with all relevant stakeholders to prepare for a new era of treatment and to help support health systems to achieve the full benefit of scientific advances in AD. Areas for collaboration could include: • Awareness and understanding of all stages of AD and the importance of timely intervention. • Horizon scanning of potential future DMTs in AD to help manage budgets and plan for services whilst engaging in an early dialogue as to how health systems may need to adapt to reap the full benefit of these potentially transformative therapies. • Promote research to increase the understanding of AD and support the development of improved diagnostics and new promising therapies. • Update national strategies for dementia and neurodegenerative diseases to take advantage of new health technologies that will enable earlier and more accurate diagnosis of AD and the appropriate use of new treatments Biogen/Eisai collaboration Biogen and Eisai are engaged in a co-development and co-promotion collaboration for two assets in development for the treatment of AD, elenbecestat, a Beta Amyloid Cleaving Enzyme (BACE) inhibitor in Phase 3 and BAN2401, a humanized IgG1 monoclonal antibody in a fullyenrolled Phase 2 study.
performance Make your mind your ally
Our experts translate neuroscience and modern psychology research into practical strategies for better health, happiness and personal success
MAKE STRESS WORK FOR YOU
Editorial: Thrive under pressure while also reducing the negative physical effects of stress
SPREAD POSITIVITY AT THE WORKPLACE
Positive emotions actually build psychological, physical and social resources to ultimately improve our resilience and happiness over time
COUNTER THE DARK SIDE WITHIN
To have the maximum positive impact in your spheres of influence, at work or at home, start by confronting the Darth Vaders within
THE INFLUENTIAL MIND
While all of us adore data, facts and logic are not the most powerful tools for altering opinions. The currency by which our brains assess data and make decisions is very different from what we believe.
Dr Tali Sharot
Make your mind your ally
Editor, Government Gazette’s Supplement on Performance
Make stress work for you
ot all stress is negative, it is possible to thrive under pressure while also reducing the negative physical effects of stress simply by changing the way we think about it. The outcome of a stressful situation is largely dependent upon whether it is perceived as a challenge or a threat. Developing a challenge response to stress is likely to produce positive outcomes as the individual perceives the situation as a chance for personal growth and believes they have the tools to deal with the demands presented. In contrast an individual may perceive the demands of the situation to be greater than the resources employable to deal with them thereby triggering a threat response to stress. The threat response causes poorer cognitive performance and negative physiological effects such as high blood pressure. Therefore, an appraisal of stress greatly affects how it impacts
www.governmentgazette.eu | 44
our lives. It is possible to do so by working on the three factors underpinning the challenge response. Firstly, confidence is key as it aids the identification of the personal resources and skills available to deal with the stressful situation. Developing a challenge state also requires the individual to perceive a level of control within the situation by focusing on factors that can be controlled. Lastly focusing on what must be achieved as opposed to possible pitfalls is a fundamental building block of the challenge state. (3) The difficulty with these methods of stress management is that they are by mechanism reactive to the situation of which there is a great deal of variance. The ability to access the challenge stage easily when exposed to a stressor does not necessarily mean that it will be possible to a different type of stressor. Shifting the stress appraisal process wholly towards a challenge state bias may require constant effort.
Is it possible to cultivate a general and stable positive response to stress. Yes, and it lies in overriding the belief that the experience of stress (whether it be in a challenge or threat situation) is negative. Studies have shown that this can be done by developing a “stress-is-enhancing” mindset which is the belief that presence stress enhances the outcome of a situation. Studies tested participants in a pseudo interview scenario, whereby the interviewer gave either negative and positive feedback during the process to emulate challenge and threat states of stress. Prior to this the participants were divided into two groups, which experimentally manipulated their mental attitude to stress as either enhancing or debilitating (2) Results showed that in both challenge and threat states, a stress-enhancing mindset increased the level of the hormone DHEA (short for dehydroepiandrosterone) which can be understood as a good stress hormone. DHEA is an anabolic (growth) hormone which works antagonistically to cortisol which is catabolic (break down), both are released in reaction to stress. However, when acute stress becomes chronic stress, the balance of cortisol levels go up and DHEAS levels go down and it is at this point that some of the most harmful effects of stress are seen. Furthermore, taking DHEAs supplements has been found to be helpful in reducing the negative effects of raised cortisol. (1) Therefore, the increase in levels of DHEAs is a good indicator that adopting a stress-isenhancing mindset is beneficial
in cultivating a positive response to stress in the long-term. The results of the study showed that better cognitive performance amongst those in the stress is enhancing group. The most interesting part of this study however is that the researcher was able to manipulate the mindset relatively easily, orientation towards a stress enhancing mindset was done using multimedia film clips designed to do so. Therefore, regardless of an individual’s natural mental attitude towards stress it is possible develop a stressenhancing mindset and benefit from its many advantages Here are some mental manipulation videos used in such experiments; https://mbl. stanford.edu/instruments/stressmindset-manipulation-videos. References: 1.Dr Joseph Debé DHEA- The real story Available at: http://www. drdebe.com/articles/dhea-the-realstory (accessed 23 September 2017) 2. Alia J.Crum, Modupe Akinola, Ashley Martin and Sean Faith(2017) “The role of stress mindset in shaping cognitive, emotional, and physiological responses to challenging and threatening stress”ANXIETY, STRESS, & COPING, 2017 http://dx.doi.org/1 0.1080/10615806.2016.127558 3.Marc Jones (2017) Developing a challenge mindset and culture Available at:https://leadersinsport. com/performance/humanperformance/psychology/developinga-challenge-mindset-and-culture/ (accessed 23 September 2017)
The science behind the Churchill grip
espite his mastery over political speeches, Sir Winston Churchill suffered from severe nervousness and prior to making speeches he would always squeeze the side of the lectern. Research on professional athletes has found that they could reduce the effects of pressure on performance simply by squeezing a ball in the left hand prior to entering a high pressure event. This occurs because in high pressure situations individuals begin to pay greater attention to the execution of behaviour which disrupts the latter’s automatic nature. This is problematic because conscious attention to behaviour causes regression to the early stages of learning behavior. Reverting to this stage, known as the cognitive stage of learning
behaviour causes greater variability of behaviour as it would be when one first starts learning. Therefore pressure affects performance as it dampens the benefits of experience. By squeezing an object in the left hand, one activates the part of the brain responsible for learned behaviour and therefore behaviour is likely to be more natural even in high pressure situations. (1) Reference: 1. Jürgen Beckmann, Peter Gröpel, and Felix Ehrlenspiel (2013) “Preventing Motor Skill Failure Through HemisphereSpecific Priming: Cases From Choking Under Pressure” Journal of Experimental Psychology: General 2012 American Psychological Association Vol. 142, No. 3, 679–691
The neurochemical compositon of a leader’s brain
eadership requires being able to perform in stressful situations. Research has shown that the brains of leaders have specific qualities which enables them to do so. Through changing your body language it is possible to develop these mental qualities. It has been found that brains of leaders often differ in terms of the neurochemical profile which allows them to prosper in high pressure situations. Leaders tend to have high levels of testosterone and low levels of cortisol. Testosterone acts on the amygdala to reduce the fear response to allow leaders to take greater risks high pressure situations. This also allows greater mental resources available for other cognitive tasks. Cortisol is a stress hormone and those who have lower levels tend to react more calmly to pressure. (1) The good news is that it is possible to alter the neurochemical composition of our brains to match those of leaders. Harvard researchers found that it is possible to Increase testosterone levels by 30 percent and reduce the cortisol levels by 25% simply by assuming the power pose for 90 seconds. The power pose involves adopting an open and expansive’ body position (shoulders back, head up, standing or sitting tall). (1)
Reference: 1.Dr. Jp Pawliw-Fry (2015) Performing Under Pressure Available at: http://www.trainingindustry.com/leadership/articles/performingunder-pressure.aspx (Accessed 23rd September 2017)
Government Gazette | 45
Make your mind your ally
Louisa JEWELL Founder, Canadian Positive Psychology Association
A positive workplace is a high-performing workplace
ife has become complex and this places higher demands on our psychological resources that were not required in simpler times. Typically, employees are more concerned with their own well-being, while employers are more interested in worker productivity. Thanks to the growing efforts of psychologists and researchers that study positive psychology - we now have a growing body of empirical research that shows improving employee well-being at work also translates into better business performance. Positive psychology is the scientific study of well-being and human flourishing. According to Dr.Martin Seligman, the founding father of positive psychology, the five pillars that contribute to wellbeing are: positivity, engagement, www.governmentgazette.eu | 46
positive relationships, meaning, and achievement: Also known as PERMA. Focus on improving any one of these areas in your life and you are more likely to be happier and more fulfilled. A positive leader is one that advocates for employee wellbeing while at the same time striving for higher levels of performance. Leaders that focus on improving the psychological resources of their people will find that they perform better, bounce back from adversity quicker, and achieve higher level goals. Here are some ways you can leverage the findings in positive psychology to improve employee performance: Promote positivity in the workplace There is a growing body of
evidence that positive emotions experienced at work have the capacity to transform organizations. Dr. Barbara Fredrickson, psychologist and leading researcher on positive emotions, discovered that positive emotions actually build psychological, physical and social resources ultimately improving our resilience and happiness over time. Observations of more than 60 different business teams revealed that high performing teams had unusually high positivity ratios, at about five to one. They also found that positive emotions are not just an end state in themselves but also a means of creating expansive emotional spaces that have the ability to strengthen the quality of social connections amongst team
members. Focus on strengths The Gallup Corporation surveyed thousands of employees and correlated responses to performance indicators such as employee turnover, customer service ratings, productivity and profitability. They found that there is a direct correlation between businessunit employee engagement and business performance. One way leaders can improve engagement is by focusing on employee strengths. Organisations that scored higher than average on the statement â€œAt work, I have the opportunity to do what I do best every dayâ€? have a 44 percent higher probability of success on customer loyalty and employee retention, and a 38 percent
higher probability of success on productivity measures. Help build positive relationships According to Dr Jane Dutton of the Ross School of Management, when people have high quality connections at work, they share information and knowledge more freely which accelerates learning and development for higher team productivity; ultimately strengthening organizational performance. Daniel Goleman of Emotional Intelligence fame also studied various leadership styles and found that the ‘Coaching’ style of leadership contributed to improved organizational climate. Why? Because ‘Coaching’ leaders who focus on the personal development of their employees
are in constant dialogue with their people - which improves every component of climate. If there is one thing we have learned from studying positive psychology – it is that relationships matter.
think of their most fulfilling job. What people most valued was a job that was congruent with their own strengths of character. Thus when we find ourselves in authentic alignment we are free to operate at our best.
Increase meaning for people at work
Increase employee confidence for higher achievement
National surveys in Canada make one thing clear: People who felt their work was important and meaningful reported higher levels of job satisfaction. Work does not necessarily have to be virtuous; it just needs to be meaningful for the person who is performing the task. Dr Chris Peterson, a leading researcher in positive psychology, conducted three studies of adults with respect to good character at work, love and play and asked respondents to
A large body of research shows a direct and strong correlation between confidence and workrelated performance. This is because confidence fuels both motivation and action. When employees have little self-doubt, they are not afraid to share ideas and challenge the status quo, both of which promote innovation in the workplace. The empirical evidence is clear: Organizations that improve employee well-being
will reap the financial rewards of improved performance. Hopefully the growing empirical evidence being delivered by positive psychology researchers will be enough to convince the leaders at the top that being positive pays Louisa Jewell is a speaker and author who has inspired thousands of people from around the world to flourish with confidence. Louisa is founder of the Canadian Positive Psychology Association and graduate of the Master of Applied Positive Psychology program at UPENN. To download the first chapter of her later book Wire your brain for confidence, visit: http://louisajewell.com/ wireyourbrainforconfidence/
Government Gazette | 47
Make your mind your ally
Shirzad CHAMINE New York Times bestselling author of Positive Intelligence
Counter the power of the dark side
f you are alarmed by the global rise of the dark voices of racism and intolerance, my research reveals your most important first step: confront the power of the dark side—inside yourself. To use a Star Wars metaphor, inside your own mind there is a continual battle raging between your inner Jedi and inner Darth Vaders. To have the maximum positive impact in your spheres of influence, at work or at home, start by confronting the Darth Vaders within. The tricky thing is that the inner Darth Vaders are not as obvious and identifiably bad as the movie version. They don’t sound as menacing, they don’t dress in black, and they don’t announce themselves as your enemy. What makes them tough to fight is that they masquerade as your best friends, so they can cause maximum sabotage. That’s why we call your inner Darth Vaders your “saboteurs.” Our research has identified 10 saboteurs. We all are afflicted with a few. To be sure, some of them do resemble the Darth Vader even on the surface, such as the Judge saboteur. But others are much better disguised. Might yours be the Controller, Stickler, Avoider, Pleaser, or Victim? Or maybe HyperRational? How about Restless? If these patterns of self-sabotage sound familiar, it is because they are universal. Our research has included 250,000 participants in more than 50 countries. The most challenging part of confronting your saboteurs is to blow their cover and expose them as your enemies. Yet the www.governmentgazette.eu | 48
first reaction of many of the CEOs I have coached over the years has been to defend them: “Sure I have the Controller, but nothing gets accomplished around here if I don’t control.” “Ok, yes, my Judge is constantly beating me and others up. But that’s how you push for improvement and avoid complacency.” The trouble with the saboteurs is that they cause all of your negative emotions, from anger, shame, and guilt, to self-doubt, despair, and stress. Your inner Jedi, whom we call your Sage, is able to handle all challenges through positive emotions like curiosity, empathy and joyous creativity, remaining calm, centered and clear-headed even in the heat of battle. In self-defense, your saboteurs claim that negative emotions are helpful and serve a purpose. If you didn’t feel angry and outraged when wrong is perpetrated, wouldn’t you remain inactive? If you didn’t feel ashamed or guilty, would you ever take corrective action? To answer that question, consider this. Is pain ever good for you? The answer is absolutely YES! If you put your hand on a hot stove, pain alerts you to remove your hand to prevent burning to the bone. The key question is: how long would it be useful to feel the pain? the answer: a split second. Just long enough to wake up, get the message, and take corrective action. Similarly, feeling negative emotions is vital as a warning system to you that something requires your attention. But the moment the information
is delivered, the negative emotion no longer serves. If you continue to feel the anger, shame, guilt or stress as you try to decide what action to take, you are not thinking clearly and won’t decide optimally. If you’re still feeling righteous or blameful in the middle of taking the action, you won’t get optimal results. The Jedi in battle is calm, clear-headed, and laserfocused. Now consider why it is vital for you to intercept the dark side within if you want to counter the dark forces in others. The human brain has mirror neurons that cause a contagion effect. If you are in saboteur-mode, you’d likely trigger saboteurs in others. Your Controller or Avoider
might activate another’s Judge or Victim. You’d be fueling a negative contagion cycle. Conversely, if you learned to activate your own positive Sage, you’d have a better chance of initiating or fueling positive contagion. Does that mean you should ignore or condone the actions of those who are causing you outrage? No. There is a difference between judgement and discernment. If someone is doing you harm, your Judge would have you feel angry, superior, righteous, vengeful, or wronged for an extended period of time, feeding the negative cycle. Your Sage would be discerning. It would clearly see the damage or danger. But it would waste no time on negative energy. It might have you feel compassion for yourself or even the lost soul who is intent on harm. It would be curious about the weaknesses and vulnerabilities of the opponent, or creative about strategies to counter the attack. As you move into offense or defense, you’d feel calm, clearheaded, and laser focused in action—much more likely to succeed. The way to respond to the dark forces around us is not by activating the dark forces within. It is by turning up the light Shirzad has been CEO of the largest coach training organisation in the world and has trained faculty at Stanford and Yale business schools. Shirzad lectures on Positive Intelligence at Stanford University.
Government Gazette | 49
Make your mind your ally
Dr Tali SHAROT TED Speaker and author of The Influential Mind
What does it take to nudge people’s beliefs?
ne of the most fundamental characteristics about humans is our desire to share opinions with an intention of having a powerful impact on others. But when was the last time you participated in a dinner party that transformed into a late-night political debate? How many of your well-thought-out, logical arguments, fully supported with facts, managed to create an impact in other’s minds? When was the last time your colleagues took note of your carefullyresearched data? If you were to rethink those occasions, alas, as neuroscientist Tali Sharot writes in her latest book, The Influential Mind, “facts and
www.governmentgazette.eu | 50
logic are not the most powerful tools for altering opinions.” The Influential Mind, the new book from TED speaker and author of The Optimism Bias, Dr Tali Sharot, challenges the wisdom of the crowd and makes a cutting-edge, research-based inquiry into how we influence those around us, and how understanding the brain can help us change minds for the better. Tali’s numerous experiments and observations have pointed out that, despite the fact that data and statistics are necessary to uncover the truth, “people are not driven by facts.” While all of us adore data, “the currency by which our brains assess data and make decisions is very different from what we believe.” When you provide someone with
new data, they are “more likely to accept evidence that confirms their preconceived notions and assess counterevidence with a critical eye.” But if evidence can barely change a person’s belief system, what can? In an interview with Janani Krishnaswamy, Commissioning Editor at Government Gazette, Dr Tali Sharot says facts often do little to “alter deeply held beliefs” and notes “data is often not the answer when it comes to changing minds.” She pointed out that there is no single truth we all agree on. “It’s easy to change a person’s beliefs when someone has the same worldview, doesn’t have a very strong opposite belief or when they don’t have a very strong motive not to believe.”
“While scientific evidence is not useless” in making effective arguments and thoughtfully constructed conclusions, “we often tend to assess people based on the knowledge that we already have.” Data cannot have the expected effect “with someone who already has a strong belief that is starkly different to yours or with someone who doesn’t want to believe what we are trying to convince them of.” Simply put, “people often embrace information that supports their beliefs and reject information that contradicts them.” On the other hand, she noted that presenting people with information that contradicts their opinion “can cause them to come up with altogether new counterarguments that further strengthen their original view.” This is exactly why many of our well-meaning attempts to change people’s minds often backfire. But why does our brain behave in that manner? The reason we have a brain like that, she says is because “that is the correct approach. It’s a perfectly rational way to form beliefs. We can’t change our beliefs everytime we see a piece of evidence. If we have a very strong belief, on average, the correct thing to do is not to let it change so quickly.” As she points out, we often seek out and interpret data in a way that strengthens our preestablished opinions. This “confirmation bias” she says is the strongest biases we hold. In fact, she argues in her book that people with strong analytic abilities are more likely to “twist data.” However, as she notes, if all or most of us possess a confirmation bias, “none of us will be in a position to persuade others.” In today’s new media era, where it is extremely easy to idenitfy evidence to support or discredit any opinion and at the same time find new information to support our own arguments, it’s not too surprising that the vast wealth of information makes us
resistant to change. What are a few strategies while trying to influence others? What mistakes do we make? One of the mistakes, Tali says we make is, “when we try to alter someone’s mind, and particularly when they have a different opinion from ours, we tend to go on argumentative mode, where we try to provide evidence for why we are right and why they are wrong.” This kind of an approach, she says often fails. How, then can we present more convicing arguments? Whether its a debate about gun control or vaccines, Tali says we should first consider the other person’s mind. We should try and understand their preconceived notions and motivations before trying to influence them. As she clearly mentions in her book, “when someone has a strong motivation to believe that something is true, even the sturdiest proof to the contrary will fall on deaf ears.” Beliefs, she says, rarely stand on their own; they are intertwined with a network of other beliefs and drives.
Data cannot have the expected effect with someone who already has a strong belief that is starkly different to yours or with someone who doesn’t want to believe what we are trying to convince them of. People often embrace information that supports their beliefs and reject information that contradicts them.
Therefore, consider the other’s person’s existing outlook before presenting an argument. More importantly, it is essential to make an argument in “a way most convincing to them, rather than a way most convincing to us.”She says the best way to start an argument is to start with what the other person agrees on.
exceptions to this rule, she says. When people are already under stress, they are actually hyper-sensitive to any negative information around them. On the other hand, in relaxed situations, they tend to understand better and interpret information in a more rational manner.
Instead of trying to change what people want to believe, we must find ways to unify our perceptions of reality.
Furthermore, she noted that, with fear campaigns, politicians often tend to affect the very being of an individual by causing fear and anxiety. She reiterated that it’s certainly not the best approach as it affects someone’s well being.
Perhaps, you could also use the power of emotion, as it is one of the strongest ways we impact each other. “The way you feel quickly, automatically, and often unconsciously affects the way those around you feel and how they feel influences your own emotions.” Fear is a mechanism often used in political campaigns to steer public opinion on a few issues. Is it right to persuade the masses through the use of fear?
How then should policymakers present their arguments? The only advice she gives policymakers, is to base their arguments on emperical and scientifally-proven data. In fact, she noted that it is more logical to make ‘evidence based’ decisions than making our judgements on intuitions
Definitely not, she says. Though fear may work particularly well when the person in front of you is already anxious, Tali says it is “not the most helpful way to change people’s behaviour.” Basically, having someone tell them what can go right, she argues is much “better than telling them what can go wrong.” In fact, she noted that humans have a bias “to move toward objects of pleasure and away from objects of pain.” Quoting the many studies that show how rewards are the most effective way of getting people to act, she said that reward system is certainly connected to our motive system. “Our brains are wired in a manner in which anticipating a reward not only triggers approach, but is more likely to elicit action. The fear of loss, on the other hand, she says “is more likely to elicit inaction.” When does such an approach work? Tali says it is true that the threat principle actually works if you want people not to do something. However, there are a few Government Gazette | 51
Speeding up the energy transition capacity of biomass supply in the EU. Past policies created a disproportionate reliance on food-based bio fuels, and policy makers have had to back-track on the promotion of these bio fuels because of concerns about increased food insecurity, competition for agricultural land, and threats to wetlands and forests.
Daciana OCTAVIA SĂ‚RBU mep Vice Chair of Committee on Environment, Public Health and Food Safety
Ensure a high mandatory target for renewables The EUâ€™s 2020 targets on renewable energy are already exceeded by a few member states making the newly proposed target of 27% by 2030 resemble a modest ambition. Daciana Octavia Sarbu MEP reiterates the need for a high mandatory target for renewables
here are important lessons to be learned from the existing renewable energy policy. Targets for renewable energy were set in 2009, but in the context of a low carbon price and uncertainty about subsidies, these targets failed to sufficiently incentivise investment in a broad range of renewables. Member states became heavily reliant on bio energy to meet their targets. This has sometimes driven damaging land use change in both the EU and in third-world countries. Fortunately, the current revision of the EU renewable energy legislation could help address these problems. The first step is to ensure a high mandatory target for renewables in the EUâ€™s energy mix. The target of 20% renewable energy by 2020 is already exceeded by a few member states, thereby making the newly proposed target of 27% by 2030 seem like a modest ambition. Setting a higher target will send a strong signal to investors and ensure member states improve their current performance in the medium to long term. Regardless of the overall target, however, the low and unstable carbon price remains the single main obstacle to a transition to renewable energy. Recent changes to carbon market legislation should bring greater stability. However, it is unlikely to result in a carbon price high enough www.governmentgazette.eu | 52
to make renewables viable without additional support. Moreover, raising the carbon price too quickly could place more people at risk of energy poverty and does not necessarily guarantee the achievement of environmental objectives. A transition phase with support schemes for renewables is therefore needed. Support schemes could help establish renewables in the foreseeable future and avoid energy price hikes for the end user. However, the existing support mechanisms may worsen disparities between member states. Therefore, harmonised support at the EU level should be considered. Joint support schemes between member states could also bring new opportunities, especially in areas with shared resources such as off-shore wind. Successfully integrating renewables into the power grid will also depend on further harmonisation of the energy market. Standardised administrative procedures, for everything from support schemes to sustainability criteria,
could reduce some of the barriers to the up-take of renewables. The current legislative proposal has been criticised for assuming a level of harmonisation which does not exist in many areas. Amendments to the legislation could improve this situation, but sufficient harmonisation in all aspects of the energy market remains a long-term goal. A strengthening of harmonised sustainability criteria could also address concerns about the environmental impact of bio energy. Major questions remain about the true sustainability of some bio energy sources and the realistic
Sometimes, the evolution in our understanding of environmental impacts requires a re-think about how individual solutions are incentivised. The newly proposed limit on the contribution of food-based bio fuels to renewable energy targets is also a sensible precaution. It will limit the impact of potentially damaging bio fuels and avoids the temptation to rely too much on one energy source. The experience with bio fuels reinforces the need for a diverse energy supply and for the legislation to encourage this. In the face of great uncertainty about future environmental scenarios, the EU needs an energy policy that is resilient and adaptable to changing circumstances. The vast range of renewable energy potential in Europe provides the basis for this resilience, but achieving it will depend largely on the decisions we make now about the legal framework for the coming years. Exploiting our rich diversity of renewable energy options should be the priority, and there are plenty of lessons to be learned from the past to create a brighter, cleaner future
Sirpa PIETIKÄINEN mep
Member of European Parliament
A paradigm shift to sustainable financing Whilst resource accounting methodologies are already in place, Sirpa Pietikäinen MEP notes that what’s needed at the present moment is identifying the right set of indicators that most parties can globally agree to
raditionally, we are used to thinking about ecology and economy as two worlds apart. This thinking is premised on the assumption of unlimited natural resources, a world with such abundant resources that the end to those resources doesn’t figure in traditional models of economic thought. Neither do the negative external costs such as the ones posed by the climate change. However, the fact is that physical limits to growth exist. It has been forecasted that global demand for resources will triple by 2050. Currently we already consume some 1.5 planets’ worth of resources every year. Following the estimates, we would need some four planets full of resources to satisfy the demand by 2050 under business as usual. Estimations vary, but it is clear that under business as usual, we are also set to exceed the 2 degree Celsius global warming, a limit set by the global community. Taking into account these facts, it is clear that the current Cartesian worldview can no longer apply. What is needed is a true paradigm shift, one with a holistic approach.
When the physical limits to growth are factored in, the whole basis of our economic thinking changes: the way we measure the success and viability of companies or countries, the way we value assets… The list goes on. A lot of work has already gone into developing resource accounting methodologies, in organisations such as UNEP or OECD. The parameters are there; what is needed now is to put this work into practice. A set of indicators that most parties can globally agree to,
Current EU-wide initiatives such as the Capital Markets Union must include an element of sustainability to ensure long-term success.
needs to be chosen, and applied to different countries and sectors. A concerted international effort is required to bring this forth and the Financial Stability Board can and should play a central role to promote this effort. Another important aspect is the fact that these indicators need to be binding, to ensure comparability. This set of agreed-upon accounting rules should subsequently be applied across the whole financial system, to measure the situation of national and global accounts much the same way that GDP currently does. By the same token, credit ratings as well as capital requirements rules must take these sustainability parameters into account. This highlights the fact that the financial system being the bloodline feeding our societies, it really needs to be at the forefront of the paradigm shift. Current EU-initiatives such as the Capital Markets Union must include an element of sustainability to ensure long-term success. If the incentives of the financial sector run counter to the goal of building more resource efficient societies and combatting climate change, the latter efforts are destined to fail
Government Gazette | 53
Speeding up the energy transition
It’s time to accelerate the energy transition in Europe
Dr Dolf GIELEN
Director, IRENA Innovation and Technology Centre in Bonn, International Renewable Energy Agency
uropean institutions are currently discussing the so-called ‘Winter Package’ of energy policy measures, which highlights renewable energy as a key component. Among these policies is a proposal for a 27 per cent renewables share of energy consumption by 2030, moving beyond the 20 per cent by 2020 target that was previously established. While this target demonstrates renewed ambition to continue the EU energy transition and reduce greenhouse gas (GHG) emissions, the technological progress achieved in recent years has created new opportunities for Europe to cost-effectively tap its abundant renewable energy resources and accelerate towards a sustainable energy future.
Preliminary IRENA estimates indicate that a 33 per cent share of renewable energy by 2030 is technically feasible and economically attractive, leading to additional GHG emission reductions beyond baseline, and bringing Europe closer to reaching their 40 per cent objective. In recent years, awareness of renewable energy’s role as a key component of the global effort to mitigate climate change has risen. Renewable energy and energy efficiency are the two cornerstones of decarbonisation in the energy sector, with the potential to achieve 90 per cent of the required carbon reductions by 2050.
It is no surprise that more is possible given today’s knowledge: the 27 per cent goal was set several years ago, and while fossil fuel prices The EU has committed to a 40 have fallen, renewables costs per cent reduction of its GHG have fallen much further and more quickly, leading to greater emissions by 2030, compared economic opportunity today. to 1990 levels. Meeting Offshore wind and solar PV are this commitment requires the most prominent examples, significant, early action. with offshore wind potential in Emissions fell by 22 per cent between 1990 and 2015, but in the North Sea alone estimated at 200 GW. DONG Energy order to meet the 40 per cent estimates that the target, an accelerated energy cheapest transition is critical, with renewables and energy efficiency at its heart.
German offshore wind (including transmission and 3.5 per cent weighted average cost of capital) is being offered at 6.2 Eurocents/kWh, followed closely by Dutch and Danish cases. The latest utility-scale solar PV auction in Germany in June of this year yielded an average cost of 5.6 Eurocents per kWh. As we can see, solar PV and wind power are quickly becoming cost-competitive without subsidies in an increasing number of situations. More importantly, technology cost reductions are expected to continue in the future. Similar cost reduction trends can be clearly seen in other areas such as electric vehicles and battery storage. The economic case is further strengthened if external effects are considered. Climate comprises a large part, but in fact, health benefits from reducing air pollution, etc. dominate. Finally, there are important macroeconomic benefits. Renewable energy is an engine of economic growth and source of jobs while enhancing energy security. Globally, 9.8 million people are currently employed in renewables, with 1.16 million people working in the renewables sector in the EU. But the number of jobs globally would reach 26 million by 2050 under accelerated renewables adoption, IRENA analysis shows. Technology innovations must go hand-in-hand with new business models and market designs. In particular, more attention is needed for end use sectors (buildings, industry and transport), where important electrification opportunities exist. With respect to innovation,
Europe is leading in offshore wind, but lags behind in other sectors. In the vehicle industry for example, Europe must accelerate innovation to maintain its leadership. Experience in the solar PV industry has shown that a lead today can vanish in a few short years, if innovation stalls. As more electric vehicles take to the road, the additional electricity requirements must be met by renewables. The additional electric vehicles would enable the integration of more power from variable renewables, leading to a virtuous cycle whereby both the transport and power sectors are decarbonized simultaneously. Modernization of electricity systems as well as improved and standardized information and communication technology integration will play a key role. Moving forward, European countries will be in the driver’s seat. The energy transition requires voluntary government pledges, backed by effective and efficient policy frameworks and implementation schemes. To achieve the set objective, countries will play a critical role in creating the enabling environment for the development of renewable energy, while continuously increasing the ambition in their national plans and strategies. Accelerating the deployment of renewables with a view to 2030 is technically feasible and economically viable with today’s technologies. It should no longer be seen as a burden, but rather as the vast economic opportunity it can unleash. All EU member states have untapped renewables potential which could be harvested cost-effectively, driving economic growth and creating jobs. Tapping this additional potential will bring the EU closer to achieving its emissions reductions goals, while substantially improving the health and wellbeing of its citizens. The energy transition is on its way, but with a nearly 20 per cent share of renewables today, the decarbonisation of energy supply has just begun
Director General, BEUC - The European Consumer Organisation
Going green - making it easier for consumers
or 80% of households in Europe, generating electricity from solar panels on their rooftop would be cheaper than purchasing it from the grid. This could have a tremendous impact on climate action and politicians should eagerly be taking note of this winning formula. Consumers face a number of hurdles when it comes to producing electricity from their solar panels. Finding a good provider to install solar panels is not always easy. Evenharder is getting the planning permission from the local authority or accessingthe grid, which can take several months in some countries.Then there are the financial considerations. If consumers want to break even when it comes to their investment, they have to look beyond self-consumption of the electricity they are producing. That means selling excess electricity to the grid. But the costs of installing solar panels, coupled with the fee for connecting one’s production to the grid, are upfront and usually high. In contrast, the return from consuming less electricity from the grid and selling any excess electricity is low. It is also spaced out over a long period of time. And that’s if those managing the grid’s energy distribution (the Distribution System Operators or DSOs) agree to connect the consumer to the grid swiftly. Currently, in most member states the model is not very attractive, nor very easy, for consumers. But this has to
change. The rules in the energy market were written for the big utilities, not for millions of selfgenerating consumers. What consumers need is a dedicated approach, one that is different to the one for big energy suppliers, one where consumers are treated fairly. They need a ‘bike lane.’ First, the EU has to simplify the rules for connecting electricityproducing consumers to the grid. The rules for consumers should be a fast-track version of what energy companies have to go through. And clearly Member States, energy distributors and local authorities should sign up to and follow these rules. Consumers should also know what they are going to earn within a realistic time-frame. They should not wait decades for their investment to be paid off. Secondly, consumers need fair remuneration for the electricity they sell to the grid. They are contributing to a more sustainable future by taking the time to install solar panels on their property, and thereby providing the grid with clean energy. But they do not have the same resources as the big utilities who dominate the market. So why should household consumers bear the same risks as large energy companies? Thirdly, policy-makers should remember that not all consumers live in houses they own. For those who live in social housing or who are tenants, cheap solar electricity generated on the rooftops should be accessible. That would be an important
contribution in the fight against energy poverty. ‘Green electricity’ tariffs There are consumers who want to support ‘green electricity’ without actually producing any themselves. For them, there are ‘green electricity’ tariffs. Many consumers assume, from the swanky advertising they receive, that the money they spend on these tariffs is supporting renewable energy in some way. Unfortunately, in many countries, ‘green’ tariffs are a smokescreen for things like coal power plants or nuclear. Technically nobody is doing anything wrong But if consumers think their actions are helping the environment, there is something unfair with the policy. The EU should make energy suppliers provide clear, comparable and credible information about the environmental footprint of a ‘green’ tariff. Market regulators, in the meantime, should set rules in order to trace how green tariffs lead to environmental benefits. Consumers surely have a right to know how their choices are impacting on the environment. For all the hype about the energy transition to renewables, and how consumers will be at the centre of the future energy market, there are still barriers to overcome. A good place to start would be to create that ‘bike lane’ for consumers in self-generation, and to make sure that ‘green’ tariffs really are green
Speeding up the energy transition
Pierre JEAN COULON
President of the Section “Transport, Energy, Information Society” (TEN) of the European Economic and Social Committee
Making the energy union work for all citizens
epresenting civil society organisations across Europe, from companies and trade unions to research, environmental, farming, consumer and other interests, the members of the European Economic and Social Committee had warmly welcomed the European Commission’s ‘Energy Union’ strategy in mid-2015. In particular, the Committee unreservedly endorsed the vision of an Energy Union “with citizens at its core, where citizens take ownership of the energy transition, benefit from new technologies to reduce their bills, participate actively in the market, and where vulnerable consumers are protected” . In an era of populist challenges to the European project, maximising opportunities for citizens to benefit from the emerging energy markets and technologies,
with their fundamental importance for the well-being of Europe’s citizens, can boost in a very concrete manner the support for Europe, its policies and institutions.
revolving around large, mostly fossil fuel fired power stations rather than for the decentralised and variable supply of energy from renewable sources of the future.
To make the Energy Union work for the citizens however is a giant’s task, especially considering that the Energy Union is also to benefit European companies and workers while pursuing ambitious climate, public health and environmental protection goals.
This is a problem for citizens because the costs for these investments translate into higher prices for energy, as the growing share of network fees in retail prices show across EU member states shows. This in turn affects in particular vulnerable consumers, increasing their risk to become energy poor. European societies have seen a rise in the number of households at risk of energy poverty, now amounting to between 50 and 120 million people in the EU, who cannot afford to keep their houses warm in winter and/or are behind with their electricity bills .
One of the key challenges to putting citizens at the heart of the energy transition is a lack of financial resources. The funding gap is felt in relation to public and private financing of required changes in the energy infrastructure, needed because the existing infrastructure continues to be adapted to the needs of centralised structures
A second key challenge to a citizen-centred energy transition
is the risk that the opportunities of new energy technologies pertain to particular social groups of society, mostly welleducated and affluent citizens. The deployment of these new technologies, from smart household appliances to electricity generation and storage systems, often requires awareness, technical competencies, and financial resources for the upfront investment. The vision of active energy consumers, even prosumers, clashes with a reality in which many consumers do not even have a clear picture of how much energy they consume, how
electricity prices come about, and what the sources of their electricity are. The EESC has been particularly vocal about these challenges – and has sought to help the EU institutions to develop solutions, especially in relation to the challenge of energy poverty and the opportunities for citizens to produce their own electricity. It may be a little known fact that energy poverty was first discussed at EU level in 2001 in an opinion by the European Coal and Steel Community’s Consultative Committee, now part of the EESC. More recently, in 2013, the EESC has dedicated an opinion that calls for coordinated European measures to prevent and combat energy poverty . The EESC made a number of practical recommendations, from establishing a European
Energy Poverty Observatory and developing a comprehensive EU Energy Poverty Strategy, setting up a European Energy Solidarity Fund, and introducing an energy poverty element to the impact assessments of new energy policies to organising a European Year of Energy Solidarity. Some of these proposals have found their way into the current ‘Clean Energy for All Europeans’ package, in particular the Observatory . Others did not, such as the Solidarity Fund. A systematic ‘mainstreaming’ of energy poverty considerations remains – for the Committee – a key objective for the elaboration and implementation of the Energy Union strategy – in order to avoid leaving behind large groups of European societies. The EESC was also among the first institutions with a strong interest in energy prosumers,
i.e. those energy consumers that produce and sell their own energy. More recently, the EESC has published an own-initiative opinion on prosumers and prosumer cooperatives. With the rapid decline of technology costs and the diffusion of digital technology, photovoltaics and other renewable energy technologies hold the potential to allow all citizens to benefit from energy markets. In order for all to benefit, the EESC stressed the importance of power cooperatives that allow tenants and other groups unable to bear the investment costs on their own to partake in prosumerism and proposed to strengthen
the rights and rules concerning energy communities laid out by the European Commission in its recent ‘clean energy’ package. The Energy Union strategy offers great opportunities to boost the European project in the eyes of the citizens if all citizens benefit from the opportunities the energy transition offers and citizens are protected from the risks associated with the energy transition. While there are positive signs in terms of civil society actions and EU measures, a lot still remains to be done. In this context, our Committee works hard to make the voices of civil society heard on the corridors of Brussels and to show citizens the benefits of European energy integration, whether this is through our opinions or through our priority project, the European Energy Dialogue. In a nutshell, the EESC pursues a vision of an Energy Union for the citizens, by the citizens, and with the citizens
Recommendations to reshape policy making
colorectal cancer REPORT
Identifying critical steps towards improved treatment of colorectal cancer Eight leading European healthcare institutions develop joint agenda to fight colorectal cancer
Find out what leading experts in digestive health think missed opportunities WHOâ€™s Dr Marilys Corbex highlights that improving early diagnosis of symptomatic cancer patients is often overlooked prevention is key Prof Fortunato Ciardiello, President, European Society for Medical Oncology, highlights the importance of such a preventative diet importance of diet Bryony Sinclair, Senior Policy and Pubic Affairs Manager, World Cancer Research Fund UK on what needs to be done in the areas of diet, nutrition and physical activity geriatric oncology Prof Demetris Papamichael, Colorectal Cancer Task Force Lead at the International Society for Geriatric Oncology offers policy recommendations for manageing colorectal cancer in the elderly urgent action required Dr Georgios Pechlivanidis, National Representative of Greece, European Society of Coloproctology points out three urgent issues that should be addressed in order to ensure optimum management of colorectal cancer value of colonoscopy VIEWPOINT: As colonoscopy is considered one of the most effective colorectal screening procedures, Dr Alastair Benbow, Chief Development & Medical Officer, Norgine, says we need to ensure the use and adoption of modern bowel cleansers and innovative diagnostic devices the quality debate As the quality movement in healthcare is becoming increasingly important, Peter Naredi, President, European CanCer Organisation explains the organisational components and actions necessary to deliver high quality cancer care to patients importance of screening Geoffrey Henning, Policy Director, EuropaColon calls for a formal population-based screening for colorectal cancer priorities in surgery Prof Gunnar Baatrup, Senior Colorectal Surgeon, OUH University Hospital points out the top priorities in reducing colorectal deaths roadmap for the future Prof Thomas Seufferlein, Professor of Gastroenterology, United European Gastroenterology, presents a roadmap for the future of colorectal cancer care
frameworks for action
Specialised healthcare institutions present their fast-track strategy to fight colorectal cancer at the ICPS CRC Europe Roundtable
ICPS Colorectal Cancer Europe Roundtable
Leading colorectal cancer experts and policy makers develop joint agenda The International Centre for Parliamentary Studies brought together the European colorectal cancer education and advocacy community, clinical experts and representatives from the World Health Organisation to collaborate on and develop a shared agenda in the interests of the hundreds of thousands of Europeans at risk of developing colorectal cancer every year. Diane Rolland, International Program Manager at ICPS, recapitulates the recommendations tabled at the roundtable
colorectal cancer mortality is falling in an increasing number of European countries, despite persistent differences between men and women and between specific regions in Europe. Existing strategies in several European countries could be used as models to design and implement effective health policies to prevent death from colorectal cancer.
olorectal Cancer (CRC) is the second most common cause of cancer related deaths in the European Union, accounting for one in seven new cancers and one in eight cancer deaths. With more than 360,000 new cases per year, colorectal cancer is the second most frequently diagnosed cancer in the European Union after breast cancer. The number of cases is expected to increase by 15% in the next ten years reaching 417,000 new cases per year. If this situation is to change, the EU must generate greater awareness of CRC through educating, highlighting the risk factors and symptoms and promoting healthier lifestyles as a preventive measure. In order to find ways to www.governmentgazette.eu | 60
improve awareness, care, surveillance and treatment of CRC in Europe, the International Centre for Parliamentary Studies brought together specialised European cancer organisations, representatives from WHO Regional Office for Europe, medical and clinical experts, patient groups and other key stakeholders in Brussels at the Colorectal Cancer Europe Roundtable on 12th April 2017. Chaired by John Bowis OBE, Former Member of the European Parliament and Minister of Health (United Kingdom), more than 30 participants from over 15 European member countries present at the roundtable shared their experience and best practices in their respective countries and institutions. Participants agreed that
Improving early detection and screening
Persistent inequalities in screening exist across several EU countries. Since colorectal cancer screening is very resource demanding, countries with limited resources should plan their screening strategies more wisely.
Over the past two decades, early detection through screening has increased significantly throughout Europe, as a tool in reducing mortality rates. At the same time, new treatments have been developed and made available. While screening will focus on testing healthy individuals, early diagnosis will aim at identifying symptomatic patients and treat them as early and fast as possible. The WHO considers that more than 80% of patients who report suspicious symptoms at primary level should be diagnosed within a month and treated within 2 months. Unfortunately, for many patients in the EU - even in the richest countries - this is not a reality
because of suboptimal awareness among patient and GPs about symptoms, poor referral processes, challenging access and/or long waiting times. Persistent inequalities in screening exist across several EU countries. Since colorectal cancer screening is very resource demanding, countries with limited resources should plan their screening strategies more wisely. The benefit of improved (fast track) early diagnosis and treatment of symptomatic patients should not be overlooked. In its screening program, the UK managed to decrease the colonoscopy false positive rate from an initial 10% to 3% thanks to mandatory training. Multidisciplinary approach Multidisciplinary approach to treatment of colorectal cancer remains the exception rather than the rule in many EU countries, especially in small towns and remote regions and particularly in older patients who are in need of such multidisciplinary care. Too often, patients are treated by surgery alone. More effort is required to convince and educate clinicians about the benefits of multidisciplinary treatment.
are generally better educated, and are more able to take on responsibility for patient care. In fact, nurses can do some of what doctors do, usually to a greater level of satisfaction. For instance, colorectal nurse practitioners reportedly perform painless colonoscopies compared to a few doctors. When done well and softly, colonoscopy does not require sedation. However, performing soft and long colonoscopies is not very cost efficient for doctors. In the Netherlands, for instance, it was calculated that a colonoscopy performed for more than 10 mins is not profitable for the clinician who performs it. However, it is important that high quality colonoscopies are available to all patients. Some of the key recommendations tabled at the roundtable include: - There’s a need for stronger lobbying at the political level to put CRC on the same level as other cancers;
level system to respond to the burden of CRC in Europe;
the latest standards and strict quality controls;
- Increasing participation in national screening programmes remains top priority. This can only be achieved by decreasing the stigma around it and improving the overall patient experience;
- Research needs to be developed and more money should be given for research and innovation;
- Multidisciplinary teams should be implemented at all levels. This includes a need for education in imaging, multidisciplinary teaching and interdisciplinary team work; - More needs to be done in terms of prevention and early diagnosis. There needs to be more focus on screening and the follow-up needs of patients should be harmonised; - Quality controls are essential for patient care. Registries and protocols for diagnosis should be standardised amongst EU countries; - We should provide access to high-quality data in order to increase the quality and impact of research; - It is important to improve the use of minimal invasive surgery policies to support primary care and identify symptoms; - Guidelines at a national level should be in accordance with the best European guidelines and updated at least once a year with
- There is an overall need for standardisation at the EU level, sharing of best practices amongst EU member states and better distribution of resources for research Delegates present at the iCPS Colorectal Cancer Europe Roundtable included: Consultant Colorectal and General Surgeon, Basingstoke Hospital, President, Borka, Head, Section for Bowel Cancer Screening, Cancer Registry of Norway, Head of Department, Hepatology and Gastroenterology, Charité – Universitätsmedizin Berlin, Chief Executive Officer, ECCO - European Cancer Organisation, Chairman, Radiology, ESGAR - European Society of Gastrointestinal and Abdominal Radiology, Consultant Paediatrician, ESPGHAN - European Society for Paediatric Gastroenterology, Hepatology and Nutrition, Director of Policy, EuropaColon, MEP, European Parliament, National Representative of Greece, European Society of Coloproctology, Chief of Endoscopy Laboratory, European Society of Gastrointestinal Endoscopy, Director General, European Society of Pathology, President, Hellenic Society of Gastroenterology, Deputy Director for Research and Education, National Cancer Institute, Hepato-gastroenterologist, Netherlands Association of Hepatogastroenterologists, Chief Development & Medical Officer, Norgine, General Manager, Gastroenterology & Hygiene, Olympus, Professor, Senior Colorectal Surgeon, OUH University Hospital. Vice-President, Polish Society of Gastroenterology, Secretary General, Portuguese Society of Gastroenterology, Committee Member, Primary Care Society for Gastroenterology, Pathologist, Radboud University Medical Centre, Executive Director, Romanian Cancer Society, Head of Unit Translational Cancer Research, The Danish Cancer Society Research Center, Hear, Radiology Department, The Netherlands Cancer Institute, Chief Medical Officer; Head of Surgical Oncology, University Clinic for Visceral, Transplantation and Thoracic Surgery, Head, University Hospital Salzburg, Technical Officer, WHO Europe.
coLoRectaL canceR in Young aduLts acRoss euRope
Surgeons at the roundtable noted that nurses nowadays
- There is a need for a macro-
Colorectal cancer in young adults across Europe
new diagnoses Have gRown fastest in aduLts aged 20-34 peRsistent RectaL bLeeding bLood in tHe stooLs HigHest incidence of cRc in noRtH easteRn & easteRn euRopean countRies
abdoMinaL pain and bLoating Loss of appetite unexpLained weigHt Loss
HoweveR, if detected eaRLY, Young patients Have betteR oveRaLL 5-YeaR suRvivaL Rates if tRends continue, tHe Rate of new diagnoses wiLL incRease foR...
faMiLY canceR sYndRoMes account foR appRoxiMateLY 20% of Young-onset cRc
MoRe tHan 1 in 10 cases occuRs in peopLe Less tHan 50 YeaRs of age
positive cHanges to Young peopLes’ food Habits couLd potentiaLLY Reduce tHis canceR buRden bY up to 70%
© United European Gastroenterology
Lowest RepoRted incidence of cRc in scandinavia and noRtH westeRn euRope
Young-onset cRc is MoRe aggRessive, MoRe LikeLY to be diagnosed at an advanced stage, and MoRe LikeLY to be fataL tHan cRc diagnosed LateR in Life
Government Gazette | 61
Getting behind a cure for colorectal cancer
Dr Marlys CORBEX
stand upto colorectal cancer
Technical Officer, WHO Europe
Persisting gaps and missed opportunities Improving early diagnosis of symptomatic cancer patients is often overlooked, perhaps because governments focus their efforts on screening. Dr Marilys Corbex, Technical officer, WHO regional office for Europe, says this is a missed opportunity because improving early diagnosis can significantly decrease mortality and improve survival
olorectal cancer is among the most common cancers worldwide with about 1 million new cases each year. In the European Union, with about 360,000 new cases per year, colorectal cancer is the second most frequent cancer and cause of cancer deaths after lung cancer. The number of cases is expected to increase, reaching an estimated 417,600 new cases by 2025. (1) Incidence varies considerably across European countries from 10 new cases per 100,000 inhabitants in Albania to 86/100,000 in Denmark and 85/100,000 in Hungary. These variations are mainly the results of difference in life style and age demographics of the populations. Once affected, the probability of dying from colorectal cancer also differs widely between countries; in Greece or Latvia it is around 60% compared to 30% in Iceland or Switzerland. (1) What are the risk factors for colorectal cancer? The risk of developing colorectal cancer increases markedly with age: about 8 out of 10 people diagnosed with colorectal cancer in the EU are more than 60 years old. (1) Factors that increase the risk of developing colorectal cancer include: consumption of alcohol, tobacco use, obesity or being overweight, and diets rich in fat and processed meat. Conversely, diets rich in fibres, fruit and vegetable, as well as exercise decrease colorectal cancer risk. (2) www.governmentgazette.eu | 62
Chronic inflammatory conditions of the colon such as ulcerative colitis or Crohn’s disease can increase the risk of colorectal cancer. Also, having a parent or sibling with colorectal cancer increases a person’s risk of developing cancer, particularly if they were diagnosed at a young age. Some genetic colorectal syndromes considerably increase the risk of developing cancer but they are rare and account for less than 5% of colorectal cancers cases. (2)
Improving early diagnosis of symptomatic cancer patients is often overlooked, partly because governments focus their efforts on screening. This is a missed opportunity because improving early diagnosis is a low cost activity which can significantly decrease mortality and improve survival, especially in countries where a large proportion of patients are diagnosed at a late stage. WHO has published in February 2017 a Guide to Cancer Early Diagnosis. (4)
How to ensure early detection? To ensure early detection of colorectal cancer, two types of programmes can be implemented: early diagnosis and screening programmes. Early diagnosis focuses on identifying symptomatic patients and treating them as early as possible, while screening consists of testing healthy individuals to identify those having cancers before any symptoms appear. (3) Early diagnosis programmes For many patients in the EU - even in the richest countries - early diagnosis is not a given: it can take many weeks or even months before a patient who has presented with suspicious symptoms at primary health care level is effectively diagnosed and treated for his/her cancer. This can be due to various causes: poor referral processes, suboptimal training of health staff, long waiting times and/ or poor access to diagnosis and treatment, as well as limited public knowledge about symptoms.
Improving early diagnosis is a low cost activity which can significantly decrease mortality and improve survival, especially in countries where a large proportion of patients are diagnosed at a late stage.
Several EU countries are currently implementing colorectal cancer screening programs. Methods for colorectal cancer screening include faecal occult blood test (FOBT), flexible sigmoidoscopy and colonoscopy. • FOBT detects small amounts of blood in stool, which can indicate colorectal cancer before any symptoms develop. Randomised controlled trials suggest that screening with this method reduce colorectal cancer mortality by up to 25%. • Flexible sigmoidoscopy enables visualisation of the lower portion of the colon and rectum. Randomised controlled trials
on screening by this method have found a reduction in distal colorectal cancer incidence and mortality. • Colonoscopy enables visualisation of the entire colon. Colonoscopy detects cancer or pre-cancer with a high sensitivity as a primary screening modality and is used as follow-up intervention for individuals screening positive by FOBT or flexible sigmoidoscopy. Preparing and performing colonoscopy requires more time than flexible sigmoidoscopy. In the absence of randomised controlled trials, only case control studies have shown reduction of colorectal cancer incidence and mortality thanks to colonoscopy as primary screening test. Colorectal cancer screening can have potential undesirable effects for patients. False positive results can occur, particularly with FOBT testing, and can create anxiety and involve additional testing by invasive procedures. Colonoscopy is a complex procedure and can result in adverse events, although major complications are generally uncommon. The decision to implement screening in a region or country is complex; it should be pursued only when resources are available, and when access to high quality screening can
be ensured for the entire target population, from the calling mechanism to ensure high participation, to the follow up of positive screen tests, diagnosis and treatment. Treatment and palliative/ supportive care Adequate treatment can cure colorectal cancer or considerably prolong life. When the cancer is diagnosed early (before it spreads to lymph nodes) and treated according to best practices, 5-year survival rates can reach 90%. (5) Supportive or palliative care that relieves symptoms and physical pain as well as psychological suffering is a human right for all cancer patients. This aspect remains insufficiently prioritised in many EU countries, this is due to: • Insufficient public awareness about palliative/supportive care • Insufficient skills and capacities of health staff in palliative/supportive care • Overly restrictive regulation for opioid pain relief • Social & cultural barriers, such as beliefs about pain and dying Palliative care is most effective when considered early in the course of the illness and should not be considered as an optional extra. Early palliative care is not
only critical to improve quality of life for patients, but also to secure the sustainable and efficient use of health services. (6) Role of the World Health Organisation WHO supports the adoption of effective measures for the surveillance, prevention and comprehensive control of colorectal cancer, particularly in eastern parts of Europe as well as neighbouring countries. WHO is working to: • increase political commitment for colorectal cancer prevention and control, and promote the delivery of evidence-based approaches; • monitor the cancer burden and country capacities to address cancer prevention and control • provide technical assistance for rapid and appropriate transfer of best practices to less developed countries; • strengthen health systems at national and local levels to deliver care for cancer patients;
Parkin DM, Forman D, Bray, F. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11 [Internet]. Lyon, France: International Agency for Research on Cancer; 2013. Available from: http://globocan. iarc.fr, accessed on 05/07/2017 2. World Cancer Report 2014. Edited by Bernard W. Stewart and Christopher P. Wild. Lyon, IARC press. ISBN 978-92-832-0429-9. Online http://publications.iarc.fr/ Non-Series-Publications/WorldCancer-Reports/World-CancerReport-2014 3. Knowledge into Action. Module 3: Early Detection. WHO Guide for Effective Programmes Cancer Control. World Health Organization. Geneva, Switzerland. 2007. Online. http://www.who.int/ cancer/modules/en/index.html. 4. WHO Guide to cancer early diagnosis 2017: http://www. who.int/cancer/publications/ cancer_early_diagnosis/en/
5. National Cancer Institute Surveillance Epidemiology and End Results program – Colon and Rectum Cancer fact sheet http://seer.cancer.gov/statfacts/ html/breast.html. Accessed on 05/07/2017
1. Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M,
6. Palliative Care Fact Sheet. World Health Organization. Geneva, Switzerland. 2015.
• facilitate broad networks of cancer control partners and experts at global, regional and national levels
Government Gazette | 63
Getting behind a cure for colorectal cancer
Prof Fortunato CIARDIELLO President, European Society for Medical Oncology
ESMO advances recommendations for prevention Unravelling the effects of diet on cancer risk, ESMO’s 19th World Congress on Gastrointestinal Cancer suggests loading up on fish and fruit, and cutting back on soft drinks to prevent colorectal cancer. Prof Fortunato Ciardiello, President, European Society for Medical Oncology, highlights the importance of such a preventative diet
H “ DIET AND GI DISEASES
parameters are standardised ealthcare across Europe, albeit with the professionals are varying degrees of available grappling with the Dietary factors resources and access to latest rising incidence have been thought drugs. of colorectal cancer in Europe and how to mitigate it in terms to account for To this end, the European of diagnosis, treatment, and Society for Medical Oncology about 30% of prevention. Colorectal cancer (ESMO) has created consensus cancers in Western has become the second most guidelines for colorectal diagnosed cancer in Europe, countries, making cancer (2) that encompasses with 447,000 new cases detected the complete spectrum of the diet a crucial every year, and accounting for disease, including adjuvant preventable the deaths of 215,000 Europeans treatment and treating patients per year. (1) Awareness of cause of cancer. refractory to the agents FRUITcancer AND VEG colorectal and the impact approved for standard care. Unravelling the RESEARCH SUGGESTS on the lives of Europeans must ESMO Clinical Practice EATING LARGEThe AMOUNTS effects of diet increase in order to keep policies Guidelines give evidence-based REDUCE RISK OF FRUIT regarding colorectal cancer on AND VEG CAN cancer risk recommendations for first-line EATING 10on OESOPHAGEAL GRAMS OF FIBRE the OF political agenda. REDUCE THE CHANCES OF therapy in treatment-naive is,REDUCE therefore, of OESOPHAGEAL A DAY CAN THE AND STOMACH CONTRACTING patients maintenance RISK OF BOWEL One of the main challenges is to AND STOMACH CANCER.through FIBROUS greatCANCER public health therapy,CRC treatment ensure that diagnosis, treatment, FOODS ALSO REDUCE RISK of metastasis, BY AROUND 10% importance. and continue to end-of-life biopsy collection, and other
EATING PROVEN TO
DIET AND GI DISEASES CANCERS
palliative care. Also covered are methods for preserving biopsy specimens and their use in detecting biomarkers that monitor the course of the disease, the response to treatment, and inform subsequent decisions. ESMO has been a leader in prevention of colorectal cancer by advancing recommendations for screening in the Clinical Practice Guidelines (3) and by promoting education on the role played by lifestyle in prevention, making it clear that individuals can take action to avert colorectal cancer. Colorectal cancer is not uniformly present throughout the world but is primarily distributed in Western countries. It has been estimated that the developed world accounts for over 63% of all cases, hinting the importance of lifestyle in EXPERTS ACROSS this disease. Emerging evidence MANY STUDIES AGREE reveals that modifiable risk DIETRY factors, inTHAT addition toHABITS familial CAN AFFECT OUR and hereditary factors, areRISK highly OF DEVELOPING CANCERS associated with colorectalGIcancer.
EATING FRUIT AND VEG
THAT INGREDIENTS SUCH AS REDUCESTUDIES RISK SUGGEST OF FRUIT AND VEG CAN CURCUMIN, GREEN TEA, LYCOPENE, SELENIUM REDUCE THE CHANCES OF OF OESOPHAGEAL AND VITAMINS D & E MAY HELP REDUCE THE CONTRACTING OESOPHAGEAL AND STOMACH RISK OF OFAND GI DISEASES STOMACH CANCER. FIBROUS
CANCERS FOODS ALSO REDUCE CRC RISK
ONE HIGH IN REFINED GRAINS, SUGAR, HIGH FAT DAIRY PRODUCTS, PROCESSED AND EXPERTS HIGH FAT MEATS - IS ESTIMATED TOACROSS INCREASE EATING 10 GRAMS OF FIBRE MANY STUDIES AGREE OUR RISK OF CANCER BY UP TO 29% A DAY CAN REDUCE THE THAT DIETRY HABITS RISK OF BOWEL CANCER CAN AFFECT OUR RISK BY AROUND 10% OF DEVELOPING GI CANCERS
COLORECTAL CANCER RISK INCREASES THE RISK WHILST MOREFOR RESEARCH IS REQUIRED, A HIGH CONSUMPTION OF ONE HIGH IN REFINED OBESITY GRAINS, SUGAR, INCREASES BY 28% EVERY 120g OF COLORECTAL SUGGEST THAT INGREDIENTS SUCH AS HAS BEEN LINKED WITH HIGH FAT DAIRY PRODUCTS, PROCESSEDCANCER AND BY NEARLY OF REDSTUDIES MEAT EATEN PER DAY SALT 3 TIMES IN BOTH MEN AND WOMEN CURCUMIN, GREEN TEA, LYCOPENE, SELENIUM STOMACH CANCER, OF WHICH HIGH FAT MEATS - IS ESTIMATED TO INCREASE AND VITAMINS D & E MAY HELP REDUCE THE OUR RISK OF CANCER BY UP TO 29% THERE ARE APPROXIMATELY 80,000 RISK OF OF GI DISEASES DIAGNOSED CASES WITHIN THE EU EVERY YEAR www.governmentgazette.eu | 64
© United European Gastroenterology
RESEARCH SUGGESTS WHILST RESEARCH IS REQUIRED, PROVEN TOMORE EATING LARGE AMOUNTS
Data from United European Gastroenterology Journal: (1) Farthing M, Roberts S, Samuel D, Williams D, et al, Survey of digestive heal Europe: Final report. Part 1: The burden of gastrointestinal diseases and the organisation and delivery of gastroenterology services acros
Colorectal cancer begins as a polyp, or a growth in the tissue that lines the inner surface of the colon or rectum. In some cases, polyp development is hereditary but it has also been linked to diets high in red meat, alcohol, or high-calorie foods. At ESMO, we are physicians and healthcare professionals actively engaged in treating patients with cancer, but are increasingly shifting our focus to prevention, as we know that 40% of all cancers can be prevented by lifestyle changes. The role of diet and exercise in cancer prevention cannot be underestimated There are two major dietary issues in cancer prevention; one is quantity or the correct amount of calories must be consumed. People usually consume more calories than required to balance the number of calories used in modern, mostly sedentary, daily life. The second issue is to do with the quality of the calories consumed, which must be high, with most of the caloric intake coming from fresh fruits and vegetables. Public policies are required to educate not just patients and those at risk of colorectal cancer, but also the general population. Eating habits are often forged during childhood and adolescence, making it difficult to change patterns as adults. Children often prefer snacks and sugary soda, which in combination with an inappropriate diet will put them at risk for colorectal cancer as adults. The Mediterranean diet is based on good quality fresh vegetables, fruits and protein from beans, fish, poultry, and seafood with little red meat and provides a good example of a preventative diet for colorectal cancer. Another important component is the source of fat; olive oil rather than other types of oil or butter is preferred. Sugar from complex carbohydrates and moderate use of pasta, and bread are integral elements of a healthy diet. A study recently presented at the ESMO 19th World Congress on Gastrointestinal Cancer (4) suggested that consuming fish and fruit, together with
eliminating or reducing soft drink intake, are most important aspects of a preventative diet. Investigators found that each of these elements were associated with an approximate 30% reduction in the odds of a person developing an advanced, pre-cancerous polyp, compared to people whose diet contain few Mediterranean diet components. Importantly, risk reduction approached 86% in people adhering to all three healthy choices Professor Ciardiello is ESMO President and an ESMO Executive Board Member; he served as ESMO President-Elect 2014-2015. He also serves on the editorial boards of Clinical Cancer Research, Annals of Oncology, International Journal of Oncology; Targeted Oncology, and Oncology Reports.
References: 1. Boyle P et al. ABC of colorectal cancer: Epidemiology. BMJ. 2000;321(7264):805–808 2. ESMO consensus guidelines for the management of patients with metastatic colorectal cancer. Ann Oncol (2016) 27 (8): 1386-1422. DOI: https://doi.org/10.1093/ annonc/mdw235 3. ESMO Clinical Practice Guidelines: Gastrointestinal Cancers http://www.esmo.org/Guidelines/ Gastrointestinal-Cancers 4. Fliss-Isakov et al. ESMO WGI Abstract O-023 Abstract O-023 ‘Mediterranean diet components are negatively associated with advanced colorectal polyps in a populationbased case-control study’ http:// www.esmo.org/Press-Office/PressReleases/Zoning-in-on-Specifics-ofMediterranean-Diet-for-ColorectalHealth 5. Colorectal Cancer: A Guide for Patients http://www.esmo.org/ Patients/Patient-Guides/ColorectalCancer
Bryony SINCLAIR Senior Policy and Public Affairs Manager, WCRF UK
Zoning in on specifics of diet for colorectal health Bryony Sinclair, Senior Policy and Pubic Affairs Manager, World Cancer Research Fund UK observes the insufficient policy action in preventing colorectal cancer and points out what needs to be done in the areas of diet, nutrition and physical activity
orld Cancer Research Fund’s analysis of global research, in the areas of diet, nutrition and physical activity, has found that drinking alcohol, eating processed meat or too much red meat and having excess body fat significantly increases the risk of developing colorectal cancer. Our research also found strong evidence that increased physical activity decreases the risk of colon cancer. In addition to this, strong evidence suggests that eating foods containing fibre decreases the risk of colorectal cancer. Therefore, in addition to not smoking and participating in age-appropriate screening programmes, people can reduce their risk of colorectal cancer by making changes to
their diet and physical activity levels. If people drank less alcohol, ate less processed meat and red meat, ate more foods containing fibre, achieved a healthy body weight and were more physically active, about 45% of colorectal cancer cases could be prevented in the UK alone– but it is very difficult for people to make these changes without the support of robust public health policies to create healthier environments. (1) Positive steps in the right direction There are some positive steps being taken across Europe to reduce the incidence of colorectal cancer. A good example of this is the WHO Regional Office for Europe’s stand-alone physical activity strategy, which was created in 2015, and is the first of its kind. (2) The guidance in this strategy
Getting behind a cure for colorectal cancer
includes ensuring public spaces for physical activity is accessible and safe, promoting effective physical activity and removing any barriers to participation. If member states follow the guidance from this strategy, it will be easier for people across Europe to adopt more active lifestyles and therefore reduce their risk of colon cancer. There have also been efforts across Europe to reduce consumption of red and processed meat. A good example of this is the ‘Veggie Thursdays’ initiative in the city of Ghent in Belgium, where residents are encouraged to eat as a vegetarian each Thursday. This involves schools and public sector organisations providing only vegetarian meals and restaurants having special deals on vegetarian dishes. If these types of initiatives could be rolled out in more countries across Europe, it could potentially decrease overall consumption of meat, including red and processed meat. Policy gaps that need to be filled
potential to help prevent colorectal cancer is reducing alcohol consumption. Europeans drink more than any other continent, with Lithuania drinking more alcohol each year than any other country worldwide. (5) Alcohol is such an ingrained part of many cultures across Europe, so changing behaviours around alcohol consumption will not be easy. However, there are policies governments can put in place to help reduce alcohol consumption in their populations, including policies that restrict the availability, affordability and marketing of alcohol. Prioritising prevention About 242,000 people are diagnosed each year with colorectal cancer in Europe and sadly over 113,000 die from it. (6) It is therefore vital that policymakers prioritise policies which support colorectal cancer prevention so that these devastating statistics change. Positive steps are being made, but more needs to be done if we are to see real progress
Being overweight or obese is a key risk factor for colorectal cancer and 10 other cancer types. (3) We are in the midst of a global obesity epidemic, and Europe is no exception with around 40% of women and nearly 60% of men overweight or obese. (4) Tackling obesity is complex and requires a multifaceted approach involving all levels of government and society - there is no silver bullet.
It is critical for all countries across Europe to develop comprehensive packages of policy actions that include fiscal policies (e.g. taxes on sugary drinks, targeted subsidies for healthy food), nutrition standards in public institutions and nutrition counselling in health care settings to name a few. Although many policies have been implemented across Europe to help curb obesity, examples of which can be found in our NOURISHING policy database (wcrf.org/ NOURISHING), more action is needed across the continent if we are to see overweight and obesity rates begin to fall.
3. World Cancer Research Fund, 2017 http://www.wcrf.org/ int/cancer-facts-figures/linkbetween-lifestyle-cancer-risk/ weight-cancer
Another area that has the www.governmentgazette.eu | 66
1. World Cancer Research Fund, cancer preventability estimates https://www.wcrf-uk.org/uk/ preventing-cancer/cancerpreventability-statistics 2. ‘Physical activity strategy for the WHO European Region, 2016-2025’ - World Health Organization, Regional Committee for Europe 65th Session, 2015
4. World Obesity Federation country profiles, 2017 http:// www.worldobesity.org/data/ countryprofiles/ 5. World Health Statistics 2017, World Health Organization http://apps.who.int/iris/ bitstre36/1/9789241565486eng.pdf?ua=1 6. Globocan 2012, International Agency for Research on Cancer (IARC) http://globocan.iarc.fr/ Pages/fact_sheets_population. aspx
Dr Demetris PAPAMICHAEL President, International Society for Geriatric Oncology
Managing colorectal cancer in the elderly
Treatment of cancer in older adults is more complex than younger persons because of comorbidities, competing risks of death, potentially altered treatment tolerance, and variable patient preferences. Older adults, also those with comorbidities, are willing to take a cancer treatment as long as it does not impact their function or their cognition. Prof Demetris Papamichael, Colorectal Cancer Task Force Lead at the International Society for Geriatric Oncology (SIOG) offers policy recommendations for manageing colorectal cancer in the elderly
ancer incidence is expected to increase dramatically in the 21st century, and the increase is likely to be driven largely by cancers diagnosed in older individuals. By 2030, approximately 70% of all cancers will be diagnosed in older adults. Europe carries a significant load of the global burden, with onequarter of the cases diagnosed worldwide observed in Europe despite the fact that it comprises only one-ninth of the world’s population.
This is particularly true of colorectal cancer (CRC), where the median age at diagnosis is about 71 years. Indeed, oncologists and surgeons managing colorectal cancer should appreciate that approximately 40% of their patients are over 75 and that these proportions are likely to increase further over the coming years. Colorectal cancer is the third commonest cancer in men, accounting for about 663,000 new cases worldwide every year
improvement in survival in patients younger than 75 years over the last decade, the survival rate of older patients still remains low reflecting the disparities in diagnosing and treating CRC in the older population. For patients with rectal cancer, treatment may involve surgery alone, preoperative short-course radiation therapy (SCPRT), or chemoradiotherapy (CRT) with surgical resection followed by postoperative adjuvant chemotherapy in selected patients. Metastatic disease The management of metastatic colorectal disease has been rapidly evolving in the last decade, with the increasing use of biological targeted agents and the development of advanced surgical and other related techniques. Increasingly, patients with CRC are managed within multidisciplinary teams (MDTs) and being considered for surgical resection of their metastatic disease wherever possible.
and the second commonest in women, with around 571,000 new cases worldwide every year, based on World Health Organization GLOBACAN data. Eight percent of all cancer deaths are attributed to colon cancer, placing it fourth in the rank for cancer-related death causes. About 608,000 deaths are estimated each year from CRC worldwide. Age is a major risk factor for CRC as the incidence increases with age.
It is worth noting that, for older patients who survive the first year, their prognosis approaches that of middleaged patients. Therefore, distinguishing the frail older patients from those with a good health status could potentially identify those who might benefit from intensive therapy. Despite the disproportionate burden of CRC cases and high mortality rates in older patients, the evidence-based data for treatment are lacking due to low representation of this age group in randomized clinical trials.
Adjuvant chemotherapy Currently, majority of patients with early stage CRC (I or II) are treated and cured by surgery. For patients with lymph node involved CRC, the standard treatment is surgery followed by adjuvant chemotherapy with the aim of eradicating micrometastatic residual disease following surgery. Despite concerns about toxicity in patients over 75 years of age, adjuvant treatment seems to provide benefit both in terms of disease-free survival (DFS) and overall survival (OS). However, the actual survival gain may be difficult to assess in older patients, as they can have an increased death rate from noncancer related causes. Despite observing a substantial
Despite the disproportionate burden of CRC cases and high mortality rates in older patients, the evidence-based data for treatment are lacking due to low representation of this age group in randomized clinical trials.
Comorbidity, functional dependency, and older age are associated with early postoperative mortality in patients with gastrointestinal malignancies, with 30-day postoperative mortality rates underestimating postoperative mortality in older patients. The International Society of Geriatric Oncology has previously recommended that CRC patients >65 years of age requiring surgery should undergo a preoperative whole patient evaluation of the most common physiological
side-effects of aging, physical and mental ability, and social support. Furthermore, for those patients assessed as having physical or psychological co-morbidities, it was recommended that a geriatrician was involved in patient management. One of the major challenges is the physiological heterogeneity of the older patient population with frequent discrepancies between physiological and chronological age coupled with the additional complications of coexisting medical conditions and the potential psychological and social care issues involved. Defining old or elderly patients is challenging. The patient’s biological age should ideally be established through a comprehensive geriatric assessment in order to aid therapeutic decisions. There is a paucity of clinical trial data for these patients in terms of their poor functional reserves, major comorbidities, and frailty. Indeed, there is a huge debate in the literature about how to define frail patients and how to differentiate frailty from comorbidity and disability. It is anticipated that, by distinguishing the fit from the more vulnerable older patients, treatment can be adjusted to maximize its effectiveness, avoid complications, and better meet the individual requirements of the older patient Conclusion Although CRC is a disease of aging, older patients are under-represented in clinical trials, often understaged and undertreated. The stereotypes that consider the chronological age as a factor of unfitness for treatment should be abandoned. A multidisciplinary approach and an overall treatment plan should be established soon after the diagnosis and proper staging, taking into account the patient’s personal wishes The International Society of Geriatric Oncology, or Société Internationale d’Oncologie Gériatrique in French (SIOG) is a multidisciplinary society, including physicians in the fields of oncology and geriatrics, and allied health professionals and has over 5000 community members in more than 75 countries around the world. Government Gazette | 67
Getting behind a cure for colorectal cancer
Dr Georgios PECHLIVANIDIS National Representative of Greece, European Society of Coloproctology
Urgent action required in education, training and development of guidelines Dr Georgios Pechlivanidis, National Representative of Greece, European Society of Coloproctology points out three urgent issues that need to be address to ensure optimum management of colorectal cancer in Europe
s effective management of colorectal cancer remains one of the great challenges for the surgeon, adequate training and specialisation of surgeons, training of members of multidisciplinary teams and development of accurate guidelines remain crucial. Colorectal cancer patients require medical attention for best quality of management. Well-educated and trained physicians are the least the EU owes to its citizens. “Colorectal Surgery” specialisation has been a necessity, as many other specialties in the field of general surgery, generated by the vast expansion of knowledge in all topics under the umbrella of the main specialty. As regards colorectal cancer, education in relative medical oncological issues as well as training in a wide range of interventions and surgical procedures including a variety of approaches, such as minimal invasive techniques, is mandatory. Specialisation in colorectal surgery should represent a post general surgery extra training both on theoretical and practical issues, based on a solid and functionally constructed curriculum, followed by qualification exams. At present, qualification exams are held two or three times a year under the auspices of European Union of Medical www.governmentgazette.eu | 68
Specialists (UEMS). As a prerequisite, every candidate has to be trained, after qualifying as a general surgeon, for two extra years in colorectal surgery, one of which must be undertaken in a nationally recognised unit. Although there are colorectal societies in almost all EU member countries, special colorectal surgery training or a colorectal fellowship is established in less than half of them. Apparently, there is large gap between EU countries as regards both training in “colorectal surgery” and its certification. Hence, one national colorectal
society should be founded in each EU country, with contribution and primary tasks of (a) the certification by the European Society of Coloproctology (ESCP) to construct a unified training curriculum in colorectal surgery, (b) assign the colorectal units
that have the capacity to train in colorectal surgery and control the quality of training in these colorectal units and (c) set standards of the qualification exams at the national level and under the auspices of UEMS or ESCP. Training Multidisciplinary teams remains crucial Members of an MDT should have a special training in order to deepen their knowledge in colorectal cancer. This could be achieved through the organisation of dedicated master classes, regularly attended by the MDT. In such a setting, MDT members can
exchange knowledge, learn to communicate and share their responsibilities in the best interest of patients. National colorectal societies with the contribution of ESCP, can provide this form of MDT members training and accreditation.
Although there are colorectal societies in almost all EU member states, special colorectal surgery training or a colorectal fellowship is established in less than half of them.
Guidelines Several guidelines for colorectal cancer management have been developed, such as those of the ESMO (2013, 2014), the EURECCA guidelines (2014), the St Gallen guidelines (2016), the NCCN guidelines, in addition to some others at a
These guidelines should be i) validated by the Delphi methodology, ii) regularly updated and iii) the substance on which modifications and adjustment can be integrated to form national guidelines, taking into consideration the specific needs and financial potentials of every member state. National guidelines are particularly important for the protection of patients’ rights for access to advanced diagnostic procedures, genetic testing and state-of-the-art treatment and as a tool for negotiation with
health authorities, insurance companies and state health administration
Government Gazette | 69
Getting behind a cure for colorectal cancer
Dr Alastair BENBOW Chief Development & Medical Officer, Norgine
Importance of colonoscopy in colorectal sreening As colonoscopy is considered one of the most effective colorectal screening procedures, we need to ensure the use and adoption of modern bowel cleansers and innovative diagnostic devices, and we recommend the provision of resources that will improve patient experience
here are many areas to consider to improve early detection, diagnosis, treatment and colorectal outcomes.
patientsâ€™ preparation pre colonoscopy
Reduction of burden To reduce the burden of colorectal cancer across Europe, more needs to be done to increase early detection and diagnosis, but there are obstacles to overcome
To overcome the gaps in data collection which limit the potential for quality assessment and improvement. We fully support the implementation of the European Colonoscopy Quality Investigation (ECQI) group audit tool
Increase participation in national programmes
Address variations in colonoscopy services
To increase participation in national screening programmes, there is a need to reduce the stigma associated with CRC and tackle the misconceptions surrounding diagnostic investigations and thus improve
To address variations in the colonoscopy services between European countries and improve ADR, we recommend that endoscopy services across Europe continue to adopt the following ESGE key
www.governmentgazette.eu | 70
Overcome gaps in data collection
performance measures for lower gastrointestinal endoscopy for measurement and evaluation in daily practice at a centre and endoscopist level Improve the quality of colonoscopy To improve the quality of colonoscopy, we need to ensure use and adoption of modern bowel cleansers and innovative diagnostic devices including improved bowel preparation formulas; increase the use of capsule colonoscopy and techniques such as X-ray colonoscopy, which are not invasive; improve visualisation techniques and products including dyeing/imaging, devices and assisted device to help improve control and
visibility Optimise resource utilisation To optimise resource utilisation so that as many people as possible get screened, we recommend the use of accurate pre-colonoscopy testing Improve patient experience To improve patient experience (both pre and during colonoscopy), we recommend provision of resources and tools that help patients to prepare for their colonoscopy by working with patient groups to increase awareness of colorectal cancer
Peter NAREDI President, European CanCer Organisation
Let’s talk quality: an essential debate for colorectal cancer care
he quality movement in healthcare is becoming increasingly important. Quality matters - to all cancer patients, their carers and families, and, of course, to all cancer healthcare professionals. It is for this simple reason that the European CanCer Organisation (ECCO) has embarked on a long term project to set out consensus checklists for tumour types called Essential Requirements for Quality Cancer Care (ERQCC). The ERQCC explains the organisational components and actions necessary to deliver high quality cancer care to patients who have a specific tumour type. ECCO’s recent requirements for management of colorectal cancer care provided recommendations on the following four key organisational issues: Cancer care pathways Care for colorectal cancer patients should be organised in care pathways that chart the patient’s journey from their perspective rather than that of the healthcare system. Pathways should incorporate current evidence set out in national and European guidelines. The overall pathway for colorectal cancer comprises: suspected colorectal cancer and referral; information and support for patients; diagnosis; staging; and cancer treatment management. After diagnosis, it must be clear to the patient which professional is responsible for each step in the treatment pathways and who is following the patient during the journey (usually called a case manager or patient navigator).
Follow-up and survivorship are major issues in colorectal cancer. Typically, care pathways include surveillance for cancer recurrence but patients are often having to seek help for long term side-effects of treatment, by going to both acute and community facilities. Therefore, continuity and integration of all care must be implemented as gaps in long-term care can cause a lot of distress. Patient involvement Patients must be involved in every step of the decisionmaking process. Their satisfaction with their care must be assessed throughout patient care pathways. It is also essential that patient support organisations are involved whenever relevant. Patients must be offered information to help them understand the treatment process from the point of diagnosis. They must be supported and encouraged to engage with their health team to ask questions and obtain feedback on their treatment wherever possible. Cancer healthcare providers must publish on a website, or make available to patients on request, data on centre/unit performance, including: • Information services they offer • Waiting times to first appointment • Pathways of cancer care • Numbers of patients and treatments at the centre • Clinical outcomes • Patient experience measurements
• Incidents/adverse events Colorectal cancer centres It is essential for all patients to be treated in a multidisciplinary centre; that members of the multidisciplinary team see a certain annual number of cases; and that members of the core team dedicate significant time to treating patients with colorectal cancer. Based on the existing evidence, the ECCO Essential Requirements recommend that for a hospital to be considered as a colorectal cancer centre it should manage at least 100 new CRC cases a year. All colorectal cancer units must have a followup programme in place in accordance with guidelines. Multidisciplinary working Treatment strategies for all colorectal cancer patients must be decided on, planned and delivered as a result of consensus among a core multidisciplinary team (MDT) that comprises the most appropriate members for the particular diagnosis and stage of cancer, patient characteristics and preferences, and with input from the extended community of professionals. To properly treat colorectal cancer, it is essential to have a core MDT of dedicated health professionals from the following disciplines: gastroenterology/ endoscopy; pathology; radiology/imaging; surgery; radiotherapy; medical oncology; interventional radiology; and nursing.
required is made up of: nuclear medicine; oncology pharmacy; geriatric oncology; psychooncology; diet and nutrition; palliative care; rehabilitation and survivorship; and neurooncology. The full ECCO Essential Requirements document subsequently outlines further the specific roles of each of these professions in delivery of high quality care to colorectal cancer patients. Achieving the vision The above components, and more, make up the vision for practice developed by ECCO’s member organisations and its Patient Advisory Committee, for high quality care. The challenge now is, of course, to bring the vision into being. ECCO, its members and supporting partners, will now embark on a range of activities to ensure: • patients develop awareness of the organisation of care they should come to expect; • healthcare professionals themselves demand change to achieve health systems that make best use of their contributions; and • decision-makers grow familiarity with the destination to which they should be steering healthcare reform in order to deliver the best to patients in need
The expanded MDT for colorectal cancer, who must be available when their expertise is Government Gazette | 71
Getting behind a cure for colorectal cancer
Geoffrey HENNING Policy Director, EuropaColon
Saving lives with colorectal cancer screening
here is no doubt that research, experience and numerous pilots have demonstrated that colorectal cancer screening saves lives. With this wealth of evidence, is it frustrating that formal population screening programmes have not been implemented in all European countries. In Europe, every year about 450,000 people are diagnosed with colorectal cancer and almost half of those die of their cancer. Those diagnosed with later stage cancers suffer considerably as a result of their late diagnosis and the treatment will be costly. If treatment should be simple and effective, the cancer should be diagnosed as early as possible. In 2011, the EU Commission published the European Guidelines for Quality Assurance in Colorectal Cancer Screening and Diagnosis. (1) This comprehensive publication set the standard for increasing early diagnosis and reducing mortality from CRC by introducing an organised population-based screening programme. Not only is the clinical effectiveness of screening well documented but so its cost effectiveness. Perhaps we need to define what is meant by an organised population-based screening programme. These programmes are usually overseen, if not managed by the countryâ€™s Health Ministry. Every citizen between the ages of 50 and 74 is invited, usually biennially to complete a screening test. In some countries citizens refer themselves to screened and in others, a GP recommends it. However, this is not an organised population programme. www.governmentgazette.eu | 72
Early CRC screening offered citizens the gFOBT (guaiac Faecal Occult Blood Test) but FIT (Faecal Immunochemical Test) is markedly more effective and was recommended in the 2011 European Guidelines. It is reassuring that many member states have or are converting to FIT-based screening programmes. This
test is more sensitive to cancer and particularly pre-cancer (advanced adenomas), is easier to use and achieves much higher compliance rates. A major benefit of the FIT test is that the sensitivity of the test, its positivity rate and thus the rate of referral to colonoscopy can be adjusted to the countryâ€™s endoscopy capacity. Increased sensitivity and thus clinical
effectiveness of will depend on the threshold concentration adopted for the FIT test. The EU Commission recently published a new report (2) that reviews screening member states. The report concluded that while much progress is noted “…significant efforts need to be made by the member states to improve the organisation of their programmes to further increase the coverage as well as to improve the performance.” The report makes it clear that coverage needs to broaden in scope in order to reduce the inequalities in access and extend the benefits to all eligible citizens no matter what their socioeconomic demographic. While this new report gives the most detailed picture of screening in member states, the data provided by countries was often incomplete, weakening the conclusions and making comparisons between countries
A fully functional, populationbased screening programme is a robust system of screening which reaches all eligible subjects, has good compliance and provides consistently high quality FIT testing, colonoscopy and pathology assessment.
difficult. Considerable differences exist in the way countries have approached screening; the process of rollout; screening age range, FIT threshold and how uptake and compliance has been recorded has often varied. A fully functional, organised population-based screening programme is a robust system of screening which reaches all eligible subjects, has good compliance and provides consistently high quality FIT testing, colonoscopy and pathology assessment. Such programmes will monitor performance and correct failings; it will raise national awareness of the programme and lay emphasis on campaigns targetted at groups with poor compliance. The 2017 report concluded that we need greater national compliance to meet EC screening quality standards. Most countries have made little or no progress with implementing the 2003 EU recommendations. EuropaColon has concluded that only EIGHT countries are making good progress although with some deficiencies, these are Belgium, France, Republic of Ireland, Italy, Netherlands, Malta, Slovenia and UK.
states to public health programmes. We are sure that the 43 EuropaColon partner Groups throughout Europe would make willing and effective partners to increase the priority of public health and raise awareness about screening and ways to improve compliance EuropaColon is a Europeanwide platform for colorectal cancer (CRC) aiming to raise awareness, support patients, and campaign for equity of access to best treatment and care. EuropaColon is expanding its remit to other digestive cancers. www.europacolon.com References: 1. http://bookshop.europa.eu/ en/european-guidelines-forquality-assurance-in-colorectalcancer-screening-and-diagnosispbND3210390 2. https://ec.europa.eu/health/ sites/health/files/major_chronic_ diseases/ docs/2017_cancerscre ening_2ndreportimplementati on_en.pdf
Whilst comprehensive coverage (invitations to all of the eligible population) is an essential element of screening, good compliance is also a key and requires thoughtful and carefully designed programmes. We see huge variation in compliance between countries and with many it is very low. The state of ‘proper’ screening might reflect the low priority given by some of the member Government Gazette | 73
Getting behind a cure for colorectal cancer
Prof Gunnar BAATRUP Senior Colorectal Surgeon, OUH University Hospital
Top priorities in reducing colorectal cancer deaths
he cure rate of early colorectal cancer (CRC) has increased from 40% to 95% in 50 years, whereas that of advanced cancer has increased from 2% to 10%, though the majority of resources in research and treatment have been spent on advanced disease. It seems obvious that significant progress in survival will come from prevention and earlier detection rather than advanced treatment of late cases. Colorectal cancer is primarily a surgical disease and less than 1% of patients are cured without surgery. However; the majority of costs in research and treatment are being spent on oncological treatment. The current buzz word in research and future treatment is personalised medicine. Individualised treatment has been standard of care in surgery for many years, but the new meaning of the expression covers medical treatment based upon genomic profiling and other high-tech measures. The development of these principles might become important for future treatment, but medical treatment is of no use in early cases. Many lower hanging fruits need to be harvested in parallel. Primary prevention Prevention by lifestyle www.governmentgazette.eu | 74
intervention has largely been unsuccessful. We do recommend dietary fibers, vegetables, exercise and weight control in general, knowing that the effect is limited and, perhaps therefore, the compliance is low. Development of more efficient prophylactic measures might be cost effective. Inhibitors of the enzymes cyclooxygenase (COX) has not gained acceptance due to side effects from the treatment, but the cancer prophylactic effect is significant. Prevention with COX inhibitors, like aspirin, is therefore gaining renewed interest. Individualised treatment of high risk persons is being tested in large clinical trials. Exciting new COX inhibitors derived from vegetables, with no known side effects, have been identified and are being investigated. Secondary prevention screening Population based screening is gaining a foothold in more European countries. Although screening methods are being discussed and, in many aspects are suboptimal, it has led to a significant decrease in colorectal cancer deaths. More widespread use of screening and the development of more efficient screening methods might increase cancer survival throughout Europe. Screening detects early stage cancers suitable for less invasive surgery (MIS) with high cure rates. It also finds cancer precursors which can be resected by out-clinic procedures.
The very slow adaptation of screening in European countries is probably due to low efficiency. The expected reduction in colorectal cancer deaths is 16 â€“ 25% of the target population. Compared to other cancer screening programmes, the colorectal cancer screening is efficient and cost effective; but still improvable. Only 50% of those invited, do accept the entire screening procedure in the first round, and even less adhere to the programme as recommended. Furthermore; the sensitivity and the specificity of the stool test is not optimal. Almost 1/3rd of patients with cancer or polyps appear negative in the test (false negatives), and 40%, of positive test are false positives. New technologies like the colon camera capsule might improve both acceptability and efficiency, but has never been tested in screening. This and other new technologies are currently expensive, due to a low global demand, but the technology is not very complicated and the prize should become acceptable if implemented in screening. Tertiary prevention In Norway, the implementation of modern surgical principles, and systematic quality assessment of surgical quality, led to an unseen increase in cure rates. A wider European focus on surgical quality and quality assessment is probably a very cost effective method to increase survival rates in Europe. Early cases, like screening
cancers, might be candidates for local, transanal resection, which reduce cost, complication rates and loss of quality of life (QoL) from treatment. Today, major surgical procedures are offered to more than 90 % of all potentially curable patients. Development of better local resection techniques, and new concepts for the use of transanal, minimally invasive surgery combined with radio-chemo therapy, seems to produce cure rates equal to that of major surgery for early, and perhaps medium size rectal cancer cases. Minimal invasive surgery may be applicable to more than 40% of patients in screening populations, if further developed. UK surgeons have nominated tertiary prevention by minimally invasive procedures as the most important topic within colorectal cancer research in 2015. A much needed reduction in surgical side effects and loss of post-surgical QoL will most likely come from more widespread use of minimally invasive surgery. In conclusion Preclinical research throughout Europe has achieved many exciting results that are close to clinical testing. An investment in research on primary, secondary and tertiary prophylaxis might be the most efficient and cost-effective strategy to reduce colorectal cancer deaths in Europe.
Prof Thomas SEUFFERLEIN
Professor of Gastroenterology, United European Gastroenterology
A roadmap for the future
or many years, United European Gastroenterology (UEG) and its member societies have promoted the screening and prevention of CRC in the EU and many steps have been taken to tackle CRC across Europe. There is a broad consensus that screening for CRC is the best way forward. In some, but not all EU member states, screening for CRC has been established. Predominantly, member states use the faecal occult blood test (FOBT), but the modern faecal immunochemical tests (FIT) are becoming more popular. Other countries screen by endoscopy – either flexible sigmoidoscopy or colonoscopy – and in some countries, such as Germany, several screening methods are available. The sensitivity and specificity for the detection of so called advanced adenomas, lesions in the colon that are likely to develop into cancer, are highest with colonoscopy. It has become clear that invitation schemes are preferable to an opportunistic screening, as participation rates are much higher when the eligible population is actively invited. Action must therefore be taken to ensure that appropriate CRC screening and invitation schemes are therefore implemented across all EU member states. Of course, capacity for diagnostic colonoscopies in case of a
positive screening result has to be provided, to make sure that every screened person with a positive FIT or FOBT test has timely access to high quality colonoscopy. Screening for CRC commonly starts at the age of 50 or 55. However, CRC can occur much earlier, in particular when there is a higher risk due to a familial cancer burden. In many cases, simple questions regarding cancers in the family can indicate who should be screened at an earlier age, but asking these questions is not often done. Care therefore must be taken to ensure that CRC screening is available across Europe at an earlier age for the high-risk population. Treatment of colorectal cancer Substantial progress has also been made over the recent years in the treatment of CRC. Apart from surgery of the primary tumour, we have learned that surgical treatment of isolated liver metastases can provide long term survival and in some cases also a cure. Treatment is selected according to the tumour load and its molecular characteristics (see below), the chance to achieve resectability of liver metastases and the comorbidity of the patient. Modern treatment strategies for CRC include combinations of chemotherapy with so called targeted agents, aggressive
induction treatments, treatment de-escalation, drug holidays as well as reinduction therapies. Various molecular and clinical markers such as the Ras-, B-Raf or MSI status of a given tumour as well as the localisation of the primary tumour aid in selecting the optimal treatment for a patient. Immunotherapy provides a very exciting new therapeutic option for a subgroup of patients with CRC and many other novel concepts are currently being evaluated. Quality of colorectal cancer care A multidisciplinary assessment of the disease and its treatment is nowadays state of the art. Ideally, a team of highly qualified radiologists, surgeons, medical oncologists, gastroenterologists, radiotherapists and pathologists decides on the treatment of a given patient according to the current guidelines to provide a high quality of care, which should be assessed. All means in the diagnostic and therapeutic spectrum of CRC - prevention, surgical treatment, radiotherapy or systemic treatment with chemotherapy, targeted agents or immunotherapy - should be evaluated using defined quality indicators and be subject to continuous improvement. It will be an important goal to assure equal quality standards for the diagnosis and treatment of CRC
care all over Europe. Over the past 11 years, the German Cancer Society has established a voluntary system of 269 certified CRC centres with a comprehensive and independent system to review the quality of a given centre. Centres who want to obtain (and maintain) a certificate have to prove in regular independent audits that they fulfil the requirements set out in an evaluation and data sheet that is based on regularly updated, evidence-based guidelines. The reported data are verified in annual on-site audits conducted by independent experts. 58% of all surgeries for CRC in Germany in 2015 have been performed in a CRC centre. These centres are part of a comprehensive certification programme with 1,100 oncology centres in Germany and 61 centres in neighbouring European countries. Since 2016 non-German speaking countries can also join and apply to be certified as “European Cancer Centre” (ECC) (www.ecc-cert. org). CRC is still a major challenge costing more than a 100,000 lives each year in Europe. However, in a joint effort and by using the means outlined above, we can and should largely eradicate this tumour all over Europe
Government Gazette | 75
Getting behind a cure for colorectal cancer
Dr Patricia MACNAIR Committee Member, Primary Care Society for Gastroenterology
Primary care is of paramount importance
rimary care work is paramount to the goal of reducing the burden of colorectal cancer throughout Europe, and it is critical that support is given to efforts being made at this level. Targets include improved awareness of risk factors and early symptoms, helping people to make lifestyle changes needed to reduce their risk, overcoming the stigma and fear around bowel issues to enhance prompt presentation to the GP when bowel problems appear, and increasing access and uptake of effective screening. In the UK, the Primary Care Society for Gastroenterology (PCSG) is running a “Think GI Cancer” campaign with an aim to improve outcomes for gastrointestinal cancers. According to Professor Roger Jones, founder and President of the PCSG, there is good evidence that the involvement of general practice and primary care in colorectal cancer screening is associated with better uptake. He warns that “improving patient awareness and patients’ willingness to consult with relevant symptoms, and not just in people over the age of 50, is still essential, and such public education campaigns need to be repeated, rather than being just one-offs”. This means an ongoing commitment to funding for such work within Primary Care. The UK Colon Cancer Screening programme is widely admired as a good model, with over 30 million invitations sent out and more than 18.4 million test kits returned since it started in 2006, leading to the detection of more than 25,500 bowel cancers. And yet, despite 10 years of
www.governmentgazette.eu | 76
concerted work and publicity, uptake figures at June 2016 stood only at 56%, and there are considerable inequalities between different areas and demographics. According to data from Bowel Cancer UK, uptake is as low as 33% in some areas, and nearly half of clinical commissioning groups (CCGs) in England have uptakes below the national average. So we have some way to go to meet the Public health England (PHE) screening uptake target of 75% of eligible people. There is evidence for a number of interventions which can increase bowel screening uptake, most of which can be delivered via the Primary Care team. But GPs are not routinely involved in the bowel cancer screening programme as people are sent an invitation directly, to do the test at home. Research shows that if an endorsement letter is sent from the GP to make their patients aware that their doctor supports the screening programme, uptake may increase by up to 6%. If this endorsement is combined with an enhanced patient information leaflet, which explains how to use the kit as well as correcting misinformed barriers to its use, uptake may rise by 12%. More importantly, GPs can discuss the pros and cons of screening with their patients to help them make an informed choice. Face-toface health promotion sessions based in an individual’s own GP practice, or the provision of advice and the chance to answer individuals question by telephone, have also been shown to significantly increase uptake by as much as 8%. The PCSG supports the use of a personalised letter about screening from the GP to
their patients, as well as poster campaigns in the waiting room. Prompts for GPs themselves about managing early symptoms can be found in the NICE Guideline NG12. The PCSG would like to see NG12 embedded into as many pathways as possible (such as in those addressing suspected Inflammatory Bowel Disease pathways, or the management of gynaecological problems) in order to raise awareness among health professionals. Another target identified by the PCSG is to shorten cancer diagnostic pathways, and set targets for the intervals between presentation of symptoms, provisional diagnosis, investigation and intervention. This will depend on rapid access to primary care and then direct access to investigations in secondary care. There is also a need for a valid diagnostic test for patients with worrying symptoms, which can be used as a step prior to sending the individual for endoscopy. The FIT (Faecal Immunochemical Test) now replacing the Faecal Occult Blood Test in screening, should
also be made available for all GPs to prescribe if indicated, to explore symptoms as quickly as possible. Professor Jones adds that early, accurate diagnosis in primary care remains a challenge, which may be improved by opportunities for computerassisted diagnosis, diagnostic prompts, and the incorporation of Artificial Intelligence into primary care diagnostic algorithms. These are all currently being researched, and it is vital that such research is supported. There are also benefits to be gained from locating the responsibility for follow-up, discussion of non-attendance and generally promoting the importance of early detection of pre-cancer by screening with the Primary Care team
Diabetes report Recommendations to reshape policy making
Urgent solutions to tackle the rising burden of diabetes
Tackling the burden of diabetes in Europe
Roundtable reviews progress of diabetes management in Europe
Healthcare experts, policy makers and key members of the European diabetes advocacy community came together at a recent a solution-driven roundtable organised by the International Centre for Parliamentary Studies to track the progress in managing the disease and discuss the next steps for diabetes care and prevention. DIANE ROLLAND, International Programme Manager at ICPS, summarises the major recommendations advanced by the delegates
iabetes currently affects about 60 million people in Europe and its prevalence increases among all ages in the European Union, already reaching rates of 1012% of the population in some member states. This increase is strongly associated with rising trends in the modifiable risk factors, including overweight and obesity, unhealthy diet, physical inactivity and socioeconomic disadvantages. Considering that two-fifths of people age 20-79 living with diabetes (or 23.5 million people) are undiagnosed in www.governmentgazette.eu | 78
Europe, this major public health issue continues to impose a heavy financial burden on health services, making early and appropriate intervention extremely crucial. Much progress has been made in recent years, but there is still room for improvement in tackling the growing diabetes challenge in Europe and understanding the gravity of the disease in Europe. The Diabetes Europe Roundtable 2017 organised by the International Centre for Parliamentary Studies in April 2017 brought together European
Much progress has been made in recent years, but there is still room for improvement in tackling the growing diabetes challenge in Europe and understanding the gravity of the disease.
policy makers, healthcare professionals, patient groups, academic experts and healthcare stakeholders to examine the ongoing challenges in managing the prevalence of diabetes in an effective manner and explore practical solutions to implement a sustainable forward action plan. Improving the prevention of diabetes Though diabetes claims tens of thousands of lives in the European Union each year, this potentially fatal disease can be prevented. WHO estimates indicate that at least 20% of
cases of type 2 diabetes are avoidable and offers a series of preventative guidelines such as maintaining healthy body weight, being physically active, eating a healthy diet, avoiding tobacco use. Delegates at the roundtable agreed on the importance of these preventive guidelines, however raised several questions relating to effective implementation of these guidelines. Whilst governments are primarily responsible for creating awareness, employers, educators, manufacturers, civil society, the private sector, the media and individuals play an important role too. All stakeholders should aim to increase consciousness regarding the prevalence and consequences of diabetes, they should also encourage and provide an opportunity for greater physical activity, improve availability and accessibility of healthy foods, while making it less appealing to consume unhealthy foods. Participants aslso discussed the use of fiscal measures. From the two opponent experiences shared we will highlight the UK, where the decrease of sugar contained in food was overall successful amongst certain parts of the population, but has received criticism for its negative impact on those on the line of poverty and Denmark and their “tax fat” which was proven a complete failure, forcing the Danish to shop abroad and therefore again penalising those with the lowest incomes. Acceptance is by far, the greatest when people understand that the tax is meant to improve its health and wellbeing. Other preventive measures and solutions presented include national guidelines for nutrition, front-of-pack interpretative labelling, restriction of marketing foods high in fat, sugar and salt to children, especially online, providing price incentives/disincentives wherever applicable, educating primarycare healthcare professionals to manage obesity from early diagnosis to referral, and finally work towards a future European food policy that reflects the principles of the health and wellbeing related SDGs.
• There is a necessity to bring down the barriers between research, documentation and delivery to make it effective and affordable to the patients • Members states should encourage patients to make regular foot screenings to avoid amputations • Type 1 diabetes should be taken into consideration when Type 2 diabetes preventative measures legislations are put into practice as they often endanger the former • More emphasis should be laid on data sharing Addressing the complications of diabetes for a better quality of life Podiatrists around the table highlighted the fact that diabetes is one of the leading causes of amputation of lower limbs throughout the world. Many hospital visits due to diabetes-related foot problems are preventable through simple foot care routines. All people who have diabetes should have foot check-ups as a part of their regular care routine. All diabetic patients should have a basic education in foot care, and have regular foot examinations. The other complication raised was diabetic retinopathy which can cause blindness if left undiagnosed and untreated. Delegates agreed that all diabetic patients should have regular eye screening appointments to avoid such complications. Paving the way to personalised medicine The roundtable also arrived at a consensus about the necessity for more research and the use of personalised medicine for the treatment and care of patients. Representatives from the European Commission discussed a series of projects and research currently undertaken including the Innovative Medicines Initiative (IMI). Participants also highlighted the rapid progress in diabetes genetic epidemiology and advocated in favour of more research, for the identification of the spectrum of Type 2 diabetes subtypes. Though this approach is not
yet ready for clinical purpose, there are high hopes that it will help in identifying patients who may respond better to specific drug classes, whose disease may progress more quickly or those who may be at increased risk for specific complications. Some of the major recommendations tabled at the roundtable • More research should be funded by the EU at Horizon 2020. In particular, there is a need for additional research to understand and better manage Type 1 diabetes • There is a need to promote interdisciplinary team professional training at primary care level • We need to create a definite and fixed policy to establish the role and training of specialised nurses • A more personalised and patient-centric approach should be implemented • We need to simplify the issue for non-professionals over the disease and the patient management • Prevention is paramount and needs to be coordinated at the EU level • Basic research should be integrated at a regional scale to include middle income countries and foster solidarity amongst countries in Europe • We need to reduce the cost of treatment to enable patients to be treated effectively
• We need to bridge the gap between patient care and treatment and learn from the varied experiences of individual member states • Strong advocacy from patients should be more developed as they are the most effective form of communication Delegates present at the iCPS Diabetes Europe Roundtable 2017 included:: A.Menarini Diagnostics, Corporate Marketing Manager, A.Menarini Diagnostics, Scientific Marketing Affairs Manager, Alliance for European Diabetes Research – EURADIA, Executive Director, Austrian Diabetes Association, Second Secretary, Danish Health Authority, Deputy Director, diabetesDE, Director Health Policy, European Association for the Study of Diabetes, EU Liaison Officer, European Coalition for Diabetes & Vice President, Maltese Diabetes Association, Chairman, European Commission - DG RTD, Scientific Officer in charge of Diabetes and Obesity Research, European Parliament, Parliamentary Assistant, European Parliament, MEP & ViceChair of the EU Diabetes Working Group, Federation of Belgian Podiatrists, President, Federation of Belgian Podiatrists, Vice-President, Foundation of European Nurses in Diabetes – FEND, President, IDF Europe, Director Global Public Affairs Good Governance and Legal Affairs, Italian Association of Podology, President, Italian Association of Podology, Assistant, JDRF, Head of External Affairs, JDRF International, Senior Director, European Research, Latvian Endocrinologists Association, Endocrinologist, Ministry of Health, Vice-president, Slovenian National Diabetes Plan, Novo Nordisk, Vice President of Medical & Scientific Affairs, Robert Gordon University, Reader in Biomedical Sciences, Roche Diabetes Care, Head of Roche Diabetes Care EMEA LATAM, Swedish Association for Diabetology, President, Turkey Endocrinology and Metabolism Society, Secretary General, Turkey Endocrinology and Metabolism Society, President of Diabetes Study Group, Turkey Endocrinology and Metabolism Society, Vice President
Government Gazette | 79
Tackling the burden of diabetes in Europe
Prof Dr Shenaz KARADENIZ Regional Chair, IDF Europe
Dr Stefanie GERLACH
Director of Health Politics, German Diabetes Aid
Diabetes on the EU agenda
hese are very challenging times for the whole of Europe. According to the White Paper on the Future of Europe (2017), the European Commission will produce a series of reflection papers in the coming months. The first topic, which was published recently is “Developing the social dimension of Europe.” Unfortunately, herein health is not seen as a part of the “social dimension.” IDF Europe thinks that this is a major weakness. There are very clear correlations between social inequalities and the alarming rise of chronic diseases all over Europe - and rising health care costs on the other hand may eat up any progress made in “social dimension.” Concerning diabetes type 2, e.g. job insecurity and work stress, area level deprivation, low socio economic status and major stressful life events are all identified as independent risk factors. The main focus of IDF Europe´s advocacy work is to implement an overarching European www.governmentgazette.eu | 80
Diabetes Strategy. Why is this necessary? Europe is facing a growing diabetes pandemic beyond predictions. According to the latest IDF Diabetes Atlas (2015), 60 million people live with diabetes in Europe, of which 32 million live in the WHO European region. This number is expected to rise to 71 million in 2040, if we cannot halt or reverse the trend. Nevertheless, European countries haven´t been idle as over 95% report diabetes prevention policies and campaigns tackling obesity and weight loss, promoting healthy eating, physical activity, smoking cessation and/or addressing harmful use of alcohol. However, the monitoring processes and evaluations of these plans remain incomplete. There are numerous resolutions and declarations at the International and European level that are trying to push national governments to implement comprehensive diabetes plans. However, there is a severe gap between evidence and real life,
between recommendations and mobilizing political will to implement them. These gaps in scope, inclusiveness, funding, implementation, monitoring and evaluation need to be addressed because Diabetes is not a health issue alone, it has become an economic and social issue, too. In 2015, 145 Billion Euro were spent on treating diabetes in the European region. But the gravity of the situation is not fully grasped by many of our national and European politicians. Europe already has the world´s most advanced systems of welfare State, but social protection systems, including the health care sector, will need to be significantly modernized to remain affordable and to keep pace with new demographic, work-life and health realities. There is a European Centre for Disease Prevention and Control – but diabetes does not appear in the health topics covered within this body. We need a shift of paradigm here, because health has become a European issue; today we face a double challenge of epidemiological
and demographic transitions, we see the major burden of diseases shifting from acute to chronic conditions and multimorbidity. In the field of diabetes, we must now concentrate on the translation of the evidence base into practice. We must mobilize political will and shift from mobilization into implementation. IDF Europe is mapping gaps between the existence and uptake of evidence, which is unevenly distributed across the European region. This mapping will represent a powerful advocacy tool for policy change. “What has Europe ever done for health?” was the title of the editorial from The Lancet, delivered in March 2017 to mark the 60th anniversary of the EU; the editor certainly gave a very long list! In the field of diabetes, the EU commission initiated a Joint Action on Chronic Diseases (2013-2016) with a special Work Package on diabetes that aimed specifically to improve the implementation of national diabetes plans. The 1992 Maastricht Treaty
DG SANTE so far “has done little about the Sustainable Development Goals... arguably because cooperation with industry influences the health research and policy agenda.” One example is the negative vote from the EU Parliament in 2016 on nutrient profiles that were proposed to come with Health Claims, a decision that was clearly not in favour of the consumers. Unfortunately, health is not a priority of the European Commission President, JeanClaude Juncker, in his current legislative period, evidenced by the failure to identify health as one of his ten policy areas in his `political guidelines´. Martin McKee, member of the expert panel of the European Commission, warned, “… that recent comments by Juncker suggest that he fails to recognize the great contribution that the EU has made to health, with the risk, that health´s role could be weakened in a streamlined future Europe.” placed the health mandate of the EU at centre stage. Although delivery of health care remains a national competence, EU law governs many areas, e.g. medicinal regulation, tobacco control and nutrition labelling; EU institutions have further concentrated expertise and ensured harmonised decisionmaking. In terms of overall primary prevention and management of type 2 diabetes, however, the influence of the EU is restricted to the so-called “added value” to national health competence. As outlined in the 2013 Lancet series, most European countries have made significant, albeit uneven progress in population health in the past two decades; demonstrating how Europe offers a natural learning community enabling each country to benchmark itself against others. However, rising health care costs will either eat up economic recovery on national levels or likely impair future access and quality of treatment and care. Both of which will exacerbate
unwanted heterogeneous development inside the EU and impair health equity. Without a doubt, this must be prevented.
According to the latest IDF Diabetes Atlas (2015), 60 million people live with diabetes in Europe, of which 32 million live in the WHO European region.
The Committee for the Environment, Public Health and Food Safety of the European Parliament (ENVI) addressed the Economic and Monetary Affairs committee at the Annual Growth Survey in 2017 and hereby stressed that effective investment in health “… including health promotion and disease prevention, is essential for providing citizens with equal access to healthcare services, as well as for stability, sustainability, economic prosperity and growth promotion, producing results in terms of productivity, labour supply, human capital and public spending; stressed that expenditure on health services constitutes investment towards healthier, safer, more productive and competitive societies; underlines the importance of the sustainability of the healthcare sector, which plays an important role in the overall economy”.
To put Diabetes at the centre of the European political agenda is one of the main goals of IDF Europe. We strongly believe that a meaningful result can be achieved through the establishment of National Diabetes Strategies, which need to be funded, implemented and monitored. A European Diabetes Strategy could lead the way for the member states and help to mobilise political will and its translation on national levels throughout Europe. IDF Europe will also continue to argue for the promotion of National Diabetes Plans through its initiative ‘IMPACT diabetes’, aided by its network of parliamentarians, but also for the prevention of diabetes, and the care of people living with diabetes across the wider European region.
However, The Lancet states that Government Gazette | 81
Tackling the burden of diabetes in Europe
Prof Andrew BOULTON
Professor, University of Manchestor
Need to take action to prevent diabetes
Need for different levels of prevention
n my 2016 article in Government Gazette, I highlighted the 21st Century epidemic of diabetes. (1) Sadly, the prevalence of diabetes continues to grow across the world, and the figures I quoted last year are gross underestimates. Policies that promote prevention are therefore urgently required, and I refer here not only to primary prevention, or preventing the development of diabetes, but also secondary prevention, which is preventing the development of late complications in those already diagnosed with diabetes. Primary prevention There is strong evidence that the consumption of sugar-sweetened beverages contributes to the development of type 2 diabetes. (2) Thus, a number of countries have introduced taxes on sugary drinks, though not all have been successful. Denmark, for example, introduced such a tax only to repeal it a year later due to widespread opposition and evasion of payment. In contrast, Mexico’s 10% tax which was introduced in 2014, resulted in a 9.7% drop in sales over the first two years. It has been estimated that, if maintained over a 10 year period, this would result in 190,000 new cases of diabetes being prevented in Mexico. (3) It is hoped that the tax on such beverages proposed in the UK is indeed enacted in April 2018, without further delay. However, such taxes are only part of a multifaceted approach to prevention that is essential if we are to reverse the spiralling
www.governmentgazette.eu | 82
global increase in diabetes that we are currently witnessing. Looking to the Netherlands, one is impressed by the widespread provision of cycle tracks, parks and footpaths that encourage physical activity. Many cities have now adopted pedestrian only zones in the centres, with high fees for driving in urban areas, promotion of public transport and increasing parking fees. All these will contribute to healthier living which in turn will impact the incidence of diabetes. Secondary prevention Approximately 80% of all NHS expenditure on diabetes is related to managing the chronic complications and many are entirely preventable. The common microvascular complications are retinopathy, nephropathy and neuropathy: they are all silent until relatively advanced, thus patients with these complications often feel well and have no warning symptoms or signs. That diabetes is no longer the commonest cause of blindness in working-aged adults in the UK attests to the efficacy of the National Retinopathy Screening Programme. Diabetes is sadly now the commonest cause of patients requiring dialysis in most countries – yet nephropathy can be detected early by a simple urine test and blood pressure check: appropriate medical treatment can then prevent progression. Diabetic neuropathy is common, affecting up to half
of older type 2 patients, but it can be silent and completely without symptoms even when there is complete loss of sensation (feeling) in the feet: such patients are at high risk of unrecognised injuries to their feet that can lead to serious infections/ulcers in the feet. Indeed, diabetes is the leading cause of non-traumatic lower limb amputations in most countries. The resulting costs are horrendous as reported in a 2017 Diabetes UK publication. (4) The financial cost of foot ulcers and amputations in diabetes in England is estimated to be £1 billion. (4) Also illustrated in this report was the potential for improved services to give better outcomes with substantial associated savings. Let me give some examples:Case one: Ipswich Hospitals NHS Trust introduced a programme to improve foot care in hospital in-patients in 2010. This resulted in a twothirds’ reduction in foot ulcers leading to an estimated saving of £214,000, which represents more than 20 times the cost of the programme. Case two: Somerset: a countywide integrative diabetic foot care pathway was established in 2011, resulting in a 43% reduction in major amputations, an estimated annual saving of £926,000. These examples clearly illustrate the ‘power of prevention’. Naturally such programmes require start-up costs, but the above examples and many more
all demonstrate that shortterm expenditure results in substantial long-term savings. The identification of the foot ‘at risk’ of ulceration/injury is simple and requires no expensive equipment. (5) As the famous Irish physician Dominic Corrigan observed, ‘The problems with most doctors is not that they do not know enough – but that they do not see enough’. He was certainly correct with respect to foot examination and the prevention of diabetic foot problems. In summary, investment in preventative strategies and screening/secondary prevention of diabetes complications will not only increase our patients’ quality of life, reduce morbidity and mortality, but will also result in significant savings for the NHS. References: 1 Boulton AJM. Diabetes: the 21st Century epidemic. Government Gazette, March 2016: 85-86. 2 Imamura F et al. Consumption of sugar-sweetened beverages, artificially sweetened beverages and fruit juice and incidence of type 2 diabetes. Brit Med J 2015; 351: h3576. 3 Editorial. Lancet Diabetes Endocrinol 2017; 5: 235. 4 Lord M. Improving foot care for people with diabetes and saving money: an economic study in England. Diabetes UK 2017. 5 Boulton AJM et al. Comprehensive diabetic foot exam and risk assessment. Diabetes Care 2008; 31: 1679-1686.
Jenny LOWTHROP Travel blogger at She Gets Around
Why Slovenia should be your next short break
ou might have heard of Lake Bled and the beautiful City of Ljubljana, but there is much more to Slovenia. Despite having a population of just 2 million, it’s a country full of surprises; from the stunning food and wine to eco culture and views to rival Scandinavia. If Slovenia isn’t on your bucket list already, it should be! It is a country of the future and the past, with villages abandoned since the Second World War, yet remarkable innovation in green energy and agriculture. Slovenia’s wine is its best kept secret. Though wine connoisseurs may obsess about the wineries of Italy or Spain, Slovenia is rarely on their visit list. The country produces close to 100 million litres of wine each year, but only exports around 8%. Clearly, their wine is too good to share. After visiting several wineries around the North West Brda region, I can confirm this is very much the case. From the beautifully situated family run winery, Kabaj Morel, to the Frelih House of Wine in Šentrupert, one of the oldest wineries in the world, all of them offer something inimitable and delicious. The creative food is equally surprising. The country’s culinary delights encompass a rich variety of food. It’s certainly not the bland broths and stews you might expect from the green destination which won the European Green Capital award last year. From white chocolate www.governmentgazette.eu | 84
mousse with persimmon and pollen to hot chocolate as thick as pudding, wild boar and venison pate with crayon shaped butters, barley balls with mushroom and black horseradish and spelt risotto with red trout
and parsley oil, there are plenty of options if you are a foodie. Make sure you hire a car so you can visit some of the small villages and sample their locally sourced, seasonal produce. Brzo is just one of the several villages abandoned when the border between former Yugoslavia and Italy became stricter and their main source of income, exporting timber, dried up. These eerie villages, once bustling with their own churches, shops and local pubs have lain lonely and deserted for years in the Slovenian hills. Local families are now starting to rebuild these historical homes to return them to their former glory. Contrasting the empty villages, you don’t have to go far to witness the modern environmental living that’s ahead of most of Europe. I visited the village of Šentrupert where even schools are powered
by bio fuel using the wood supplied by local farmers. It once cost 11 million a year to power the town through oil, but now creating their own bio fuel is considerably cheaper and all money stays in the local area. They recently won the most innovative and energy efficient municipality and are continuing to develop new environmentally friendly businesses and support local producers. What’s the buzz all about? If it’s something different you’re after then seek out some of their growing apitherapy practices. Apitherapy is the practice of using bees to cure many serious human ailments, from bronchitis to muscle and bone problems. There are 22 different apitherapy companies in Slovenia and it is fast increasing. I visited a couple of different apitherapy practices and though I didn’t try any remedies for myself, prescriptions can include being
bitten by many bees (ouch) to breathing in their scent or eating their pollen. Legend has it that one man was told he would never be able to walk again, but after receiving apitherapy, including getting 1000 bee stings a day, he was miraculously cured. All Slovenia’s secrets are set against stunning scenery; most notably mesmerising snowcapped mountains and the striking mirrored surface of Lake Bohinj, making it an absolute must for your next short break. Jen Lowthrop is a travel blogger at She Gets Around and digital marketing and development contractor. She has traveled to over 40 countries and is happiest when exploring a new culture with nothing but her camera in hand. You can follow her adventures on Twitter @ jlowthrop
Government Gazette | 85
A public health priority What are the symptoms? Difficulties with everyday tasks
Confusion in familiar environments
Who is affected? Nearly 10 million new cases every year
One every 3 seconds
47 million people worldwide in 2015
Set to almost triple by 2050
Changes in mood and behaviour
What is the cause? Conditions that affect the brain, such as Alzheimer's disease, stroke or head injury
Difficulty with words and numbers
What does it cost?
Majority of people who will develop dementia will be in
low- and middle-income countries
US$818 billion: estimated costs to society in 2015
Families and friends provide most of the care Carers experience physical, emotional and financial stress
Global Action Plan on the Public Health Response to Dementia 2017 - 2025
How can you contribute to change?
Photo credits: © Cathy Greenblat
As a policy-maker, you can play a key role in improving the lives of people with dementia, their carers and families by: •
Protecting the rights, freedoms and wishes of people with dementia and their carers.
Actively involving people with dementia, their carers and families in developing policies, legislation, strategies and plans.
Engaging all relevant stakeholders including public and private sector, and civil society to implement a coordinated policy response to dementia.
Creating equitable access to person-centered, gender-sensitive, culturally-appropriate and human rightsoriented care and support for people with dementia and their carers.
Ensuring the social and financial protection of people with dementia and their carers.
International Electoral Awards December 2017
The International Centre for Parliamentary Studies and International Centre for Electoral Psychology have established an award exclusively for electoral stakeholders, in recognition of their work and to acknowledge their significant contribution to the democratic process beyond the community of electoral professionals, practitioners and experts. The winners and mentions for outstanding achievements will be announced on Tuesday, 5th December, 2017 in the Dead Sea, Jordon. For further information about the awards and last yearâ€™s winners, please visit the International Electoral Awards website: www.awards.electoralnetwork.org