BASELINE 18 by BASELINE -hiv.co.uk

HEAL: The Natural Spiritual Way COACH: Your Route to Success POPPY: Ageing Study Recruiting Spring 2014: issue 18

www.baseline-hiv.co.uk

sessions courses socials convenience

Targeted services for HIV positive gay men living well with HIV Find out more: W www.ght.org.uk/beingpositive T 0161 274 4499 /beingpositiveght @beingpositiveNW George House Trust is a registered charity in England and Wales (No. 1143138) and a Registered Company Limited by guarantee in England and Wales (No. 07575379)

Here’s To a Great Year

We’d like to wish all our readers, supporters and contributors a healthy and happy new year. In this, the Spring 2014 edition, we’ve included contributions from a wide range of new writers. Thanks to everyone who submitted copy and apologies to all those who sent articles in and, due to space, we have been unable to include this time around.

In this issue 04 bylines 06 letters 08 headline: UK news

In this issue we are running articles introducing the international charity ICROSS, an article on healing, mental health and a new, currently-recruiting study looking at the effects of ageing called POPPY.

14 headline: global news

We’re always looking for contributors so if there’s something you’ve been burning to get off your chest, how about writing a myline? If you’d like to share your story and personal experience and are happy to use your photograph please contact us @ robert@ baseline-hiv.co.uk as we’d be happy to hear from you too.

22 Engaging the New NHS

Our BASELINE Facebook Group BASELINE has recently climbed to more than 1,000 members, please feel free to join us there or follow us on Twitter- we are aiming to hit the 2,000 followers mark in the next month or two- our following limits have been lifted so we can now follow more of you who tweet too. Hook up with us @BASELINETWEET on Twitter. We marked World AIDS Day by attending commemorative services in both London and Birmingham and speaking to a great bunch of people working at diagnostics firm Alere. Thanks to everyone who invited us to their event- sorry we could not get to more of them. Congratulations to the STOP AIDS Campaign who unveiled the World’s longest Red Ribbon at 45 metres in Brighton.

16 introducing ICROSS 20 chris morgan 24 POPPY study 28 coaching for PLWHA 32 alere sponsored 34 hotline 36 headline: treatment news 38 proms and prems 44 hepatitis section 58 healing 60 BASELINE congratulates 63 ibase Q and A 65 dear Susan 66 finelines

We hope 2014 is a happy and successful year for you. Keep well.

Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk

Editorial Administrator: Tom Matthews Proof reader / Social Networking Michael Duggan / Rebecca Gibson Business Development Manager: Jo Sadler Intern: Daniel Jon

For magazine and web advertising please contact robert@baseline-hiv.co.uk Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV or hepatitis status or lifestyle.

BYLINES

Deadlines for the next issue Copy 11/04/2014 Advertising 18/04/2014

Robert Fieldhouse has been working

Michael Duggan Ph.D has extensive

and volunteering in the HIV sector since 1997.

experience in manufacturing, training, and production. Schooled in chemistry, his interests include developments in HIV medication and the long search for a cure.

Jane Phillips spends her time Tweeting, Facebooking and fiddling about with words. Looking forward to another exciting year growing with BASELINE.

Mark Platt is a member of the UKCAB

Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.

Steering group, and is a community representative on the BHIVA PROMs/ PREMs Project Group.

Dr. Michael Meegan D Med HC NUI is the founder and International Director of ICROSS.

Chris Morgan is the man behind Compass, the gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefront of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life assurance industry uses today.

Andria Efthimiou Mordaunt has an MSc in Social Policy from the LSE. John Mordaunt was her life partner ‘til his death due to AIDS in 1995. 17 months later she set up a charity in his name.

Jo Sadler is a freelance Business Consultant with a long-standing connection to health and safety. She is also qualified in Personal Training and Nutrition.

Caroline Sabin is Professor of Medical Statistics and Epidemiology at University College London.

Tania Worner trained as an Natural Spiritual Healer and as a (Developing) Progressive Counsellor/Coach.

Angela Lavery currently works as a Cognitive Behavioural Psychotherapist at BHA Leeds Skyline. She has worked as a nurse in the NHS caring for people with HIV as far back as 1986. She now works in private practice and continues to provide specialist care intervention in the field of HIV.

Rebecca McDowall is a Treatments Officer and Distribution Manager at HIV i-base.

Susan Cole is a Policy Officer at NAT.

Andy Hilton is a qualified Personal Performance Coach with an Advanced Diploma in Personal Performance Coaching from The Coaching Academy.

She coordinates NAT’s activist network.

Spring 2014

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www.baseline-hiv.co.uk

Residential Weekends

for people Recently Diagnosed with HIV

What?

Residential weekend for anyone recently diagnosed with HIV. We have not set a time limit on ‘recently’: If you feel that you are still coming to terms with your diagnosis then this weekend is for you.

Why? By the end of the weekend you will have: Met other recently diagnosed people and long-term survivors Explored the common key issues facing people living with HIV Thought about your personal attitude to HIV and started to develop your personal strategies

When? 2014 30 May – 1 June 7 – 9 November

2015 29 -31 May 6 - 8 November

National Long Term Survivors Group

Contact

07763 753 444 ndbookings@nltsg.org.uk

Cost:

£50 for those who can afford it. Speak to us about fully-funded options

The weekend starts at 13:00 on Friday and finishes at 15:30 on Sunday.

What next? If you think you might be interested get in touch. We can send you a timetable for the weekend, an application form or discuss your personal requirements.

What they said. I have enjoyed myself, I don’t want it to end, I don’t want to go home Learning more about HIV in general and gaining more confidence to face life and take on new challenges. Make the best of it Sharing other people’s experiences. Putting my own position in perspective. Information and action.

Kindly Supported by

The Monument Trust Registered Charity 1040586

Drop us a line:

Email your letter to: editor@baseline-hiv.co.uk

Dear Editor I recently took the decision to ‘take the plunge’ and begin hepatitis C treatment. I just wanted to say how useful I found the BASELINE Top Tips for Starting Treatment in the last issue. Interferon Therapy is proving hard to tolerate. I am at week 11 and so my bloods are being tested next week to see if the virus is gone. I hope a positive result will give me motivation to get through the coming months. I can’t stress enough how important the love and support are of those around you; my friends have been great even when I have been extremely grouchy. Some more articles about people’s personal experience of treatment – particularly some of the newer ones would be great. Name and Address withheld.

Dear Robert Another great edition! Congratulations to you and your team. In a time when there seems to be so little information around in clinic I always see BASELINE everywhere. Keep up the good work. Hope all is good with you. Jason Young, London Editor Responds: Thanks Jason. We are now distributing to more than 170 clinics and 80 support groups and are always looking for new places to house the magazine. Stay well.

Editor Responds: Glad you enjoyed the article in the last edition. We know treatment can be tough and we want to wish you all the best. Even it if it does not clear the virus this time, it will do great benefit to your liver- and there are plenty of new options coming in the near future, which you should be able to try. Good luck with treatment.

Dear Robert I recently attended the screening of Ruins, directed by Zoe Mavroudi - any chance of an interview with her in a future issue? Editor Responds: Thanks very much for your letter. We are hoping BASELINE’s news editor will be interviewing Zoe in the coming weeks. Best wishes, Robert.

Spring 2014

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www.baseline-hiv.co.uk

Forum Link

Providing a voice for HIV patient groups across the UK

Forum Link aims to strengthen the voice of HIV positive patient representation in both service delivery & development locally, regionally and nationally. We offer expert technical, advisory and development support for new HIV positive patient groups to assist in setting up of new groups. Contact: administration@forum-link.org 020 7738 0258 http://www.forum-link.org charity number: 1150522

Stuck in a rut and want to make plans for the future? Feeling isolated and need to talk things through with someone? Lacking in confidence to do the things you want to do? Result CIC are offering free life coaching for anyone living with HIV (in England). Coaching is by telephone, Skype or instant messaging.

Want to find out more? Contact: info@resultcic.com 07582 629 560

(this is a dedicated number for this service so you can leave a confidential voice or text message)

www.resultcic.com Result Coaching and Training CIC Company registered number 8096008

HEADLINE: UK News Chris O’Connor

Cara Bids for Lighthouse Lifeline

The Lighthouse in West London, up for sale by THT, will continue to be used and run by people living with HIV if a rescue plan by The Cara Trust is accepted. To be successful in their bid Cara will need to have financial backing to the tune of £1.6 million. Under the Charity Commission rules THT are obliged to take offers for the Lighthouse, a ‘community resource’ from other charities. Chris Woolls, Cara Director says a business plan has been drawn up, backers have been sounded out and with the first floor of the Lighthouse continuing to be leased out, this should bring in £200,000 a year. As reported in BASELINE, it is thought bids would come from current tenants the Chelsea and Kensington Social Care Council, the White Eagle Spiritual Healing group and a Buddhist Group. ‘The Lighthouse was so important in the early days of AIDS, it was a place people went to die with dignity and care, now we hope it to be a place where HIV positive people go to as part of their full and healthy life - how good would that be?’ says Woolls. The Cara Trust is a two-minute walk from the Lighthouse in Ladbroke Grove and is a long established support organisation for people with HIV, with many of their clients referred to them with a number of health and financial problems. ‘We are quite old fashioned in a way. We are independent; have people living with HIV on the staff, 08

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as volunteers and trustees,’ says Woolls. ‘Many of our clients have no recourse to other services and we are flexible enough to support much of their needs.’ Cara currently rents its premises from the Methodist church on an annual basis. Cara would move to the Lighthouse and encourage other small independent groups such as Str8Talk and the Positive Ageing Forum to use the facilities and office space and encourage other independent HIV setups. The hope is to provide day care for an increasingly older population with activities, advice, specialist clinics and GP services and food, five days a week. Woolls adds, ‘I don’t think day care has been properly done for people who can lead full lives but face difficult psychological issues.’ He added that the bid has the support of local agencies such as River House Trust and Chelsea and Westminster Hospital. The Memorial Garden at the Lighthouse, where so many people have ashes scattered, is a treasured part of many positive people’s lives. The only guarantee for the garden is if the Lighthouse is in HIV hands – anyone else and it’s gone’, says Woolls, ‘We as positive people are the only guarantee that it lives on.’ Cara are looking for messages of support for their bid and people can follow the campaign on Twitter; @ CaraLighthouse and on Facebook – www.caralighthouse.co.uk

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Spring 2014

HIV services in England - Outsourcing Concerns Clinicians and activists continue to be nervous about the future of HIV services in England following the 2013 implementation of the Health and Social Care Act. The Act sees powers being moved from primary care trusts (PCTs) to 220 groups led by GPs – clinical commissioning groups (CCGs). Responsibility for sexual health care and HIV prevention was also moved to England’s 353 local councils who now directly commission the NHS and other providers for these services. Clinicians have been warning about the fragmentation of services, particularly the splitting of GUM and HIV - often provided under the same roof at the moment. Janet Wilson, President of BASHH (British Association for Sexual Health and HIV) has also raised concerns about the lack of accountability in the new system. A new paper and survey published by BASHH looks at the threats to services caused by the tendering of sexual health services. See: www.bashh.org The paper cites specific problems - in one joint sexual health/GUM service in the east of England it was not possible to find a suitable premises for the outsourced GUM services, so the contract had to be returned. Another outsourced service in the north east is no longer providing a partner notification service. Concerns have been raised that London boroughs might not fund post-exposure prophylaxis (PEP). The paper highlights that: Tendering services is expensive and time consuming and the cost comes out of the sexual health budget. The tendering process creates

www.baseline-hiv.co.uk

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uncertainty, staff leave and services are reluctant to fill these posts due to doubt over future income. Highly specialised staff are leaving and have been replaced by less qualified staff who then require further training. In a non-NHS service, consultants have been excluded from involvement in service planning. It is being suggested that consultant numbers be reduced e.g. one consultant would be expected to cover clinical services in several different health localities. The term “STIs” is used to cover all the conditions diagnosed and managed in GUM clinics. This is an oversimplified term to use in contracts. BASHH have heard of instances where non-NHS providers are interpreting this literally and are restricting the diagnosis and treatment of conditions that are not STIs but which should be routine work of all GUM clinics. There have been problems with medical records management after transfer of contracts to another NHS organisation or non-NHS providers. Many of the conditions diagnosed and managed in sexual health rely on results of previous investigations, and knowledge of previous treatment, for effective care e.g. recurrent genital herpes, syphilis, hepatitis B and C. The lack of this information could adversely affect care and pose a clinical risk. Public Health England is currently preparing a new national framework for HIV and sexual health care that can be modified to fit local needs. The framework will be ready for consultation later this year.

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Empowering and educating women to deal with lifeâ&#x20AC;&#x2122;s challenges by addressing their own health needs first

Visit

www.positivelyuk.org/women

001/UK/14-01/MM/1011 Date of preparation January 2014

This programme was funded by Gilead Sciences

I’m taking care of...Me ‘I’m taking care of..me’, created by Positively UK, highlights the complexities and challenges of living with HIV as a woman. At www.positivelyuk.org/women you can find a series of insightful and empowering films to support you in managing your health choices and engaging with healthcare professionals, including

• I’m taking care of…me

As women, it can be a challenge to balance our responsibilities while living with HIV. This film explores the importance of prioritising our health needs while managing the complexities of family, relationships, work, money and faith.

• Gender based violence and HIV

Sharing experiences and practical solutions for women seeking help, this film looks at the challenges facing women who experience gender based violence, including the mental and physical health issues that prevent women from seeking services that offer support.

• Conversations with your doctor

Supporting the positive interaction of patients with their healthcare providers, this series of role plays examines three key areas: contraception, menopause and treatment as prevention.

001/UK/14-01/MM/1011 Date of preparation January 2014

This programme was funded by Gilead Sciences

HEADLINE: Global News Chris O’Connor

Linda Clinic Campaign Goes to Court The opening of a HIV clinic in Europe’s hardest hit city for HIV has been blocked at the last minute by politicians. Narva in eastern Estonia is a town of 60,000 people with a diagnosed HIV population of around 2,000 - it is thought a further 1,000 people living with HIV who are undiagnosed – the highest HIV rate by far within the European Union. The Linda Clinic is a joint venture between the Estonian Network of People Living With HIV (ENPWHIV) and the AIDS Healthcare Foundation Europe (AHF) a ‘not for profit’ organisation. The clinic received an Estonian Ministry of Social Affairs license to fully operate in testing, diagnosis and treatment of HIV including the prescribing and dispensing of medications and opened its doors in June of 2013. At the last minute the Ministry of Social Affairs blocked the supply of antiretroviral medicines to the clinic. Further attempts to meet with the minister have been stonewalled, ‘ It is a political decision and it makes no sense, it does not serve the people of Narva living with HIV,’ says Zoya Shabarova, AHF bureau chief. Narva has a prevalence rate of 3.3% of diagnosed HIV positive people, unknown positives could be another 1,000 people. Such a rate in a city the size of London would be almost half a million people diagnosed positive instead of the current 40,000. People living with HIV in Narva are part of the Russian-speaking minority in Estonia, many of whom are injecting drug users. At the moment one infectious disease doctor is looking after these patients and services are severely stretched, say the 12

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Estonian Network of PLWHIV with threats to move the existing clinic 50 kilometres outside of Narva to a regional hospital. The Linda Clinic found premises at an old warehouse in Narva, rebuilt and refurbished it, hired staff, nurses, an experienced HIV specialist doctor and social and peer support workers – but at the moment it is limbo just offering HIV testing. There has been a widespread campaign in Estonia highlighting the need for the clinic, with activists manning picket lines outside of the Ministry of Health and Social Affairs and posters in bus shelters in the capital Tallinn. It is understood that the Social Affairs Ministry have cited World Health Organisation (WHO) guidelines on integrated care and treatment of co-infections as the reason for withholding the treatment license. ‘People will not go to the local hospital for HIV treatment; they are falling out of the system. We can only do this step by step opportunistic infections, TB and hepatitis C - we have a system that can link people into care, but if people are not getting tested and then treated with ARVs then we cannot move forward – the situation in Narva is desperate.’ A recently scheduled meeting with the Minister responsible for Health, on the 11th November went ahead, although the Minister did not appear. The ENPWHIV and AHF say the fight for the Linda Clinic to fully open will go on, with the Estonian Law Courts asked to enforce the license with a hearing scheduled for the 5th February 2014. A full report on the Linda Clinic, HIV in Narva and Estonia will appear in the next issue of BASELINE.

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Spring 2014

Indian Court Decision ‘Devastating’ Imunnotoxin Raises Hopes A team of researchers in Washington has demonstrated in a mouse model that a HIV-specific poison can kill cells in which the virus is actively reproducing despite antiretroviral therapy. The researchers from University of North Carolina and the US National Institutes of Health (NIH), say such a targeted poison could complement antiretroviral therapy, which dramatically reduces the replication of HIV in infected cells but does not eliminate them. 40 mice in the trial were bioengineered to have a human immune system. They were infected with HIV for several months and then given a combination of antiretroviral drugs for four weeks. Half of the animals subsequently received a two-week dose of a genetically designed, HIV-specific poison, or immunotoxin, to complement the antiretrovirals, while the other half continued receiving antiretrovirals alone. The scientists found that, compared to antiretrovirals alone, the addition of the immunotoxin significantly reduced both the number of HIV-infected cells producing the virus in multiple organs and the level of HIV in the blood. These findings, coupled with results from previous studies, suggest that treating certain HIV positive people with a combination of antiretrovirals and an immunotoxin might help achieve sustained disease remission, in which HIV can be controlled or eliminated without a lifetime of antiretroviral therapy. However, further study is required, the scientists say. The study is published in the journal PLOS. www.baseline-hiv.co.uk

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India’s Supreme Court decision to uphold Section 377 of the India Penal Code (IPC), which criminalized ‘homosexual acts’ could have a huge and detrimental effect in the fight against HIV/AIDS. The decision reversed a 2009 Delhi High Court judgment that decriminalized same-sex relations. AIDS activists feared the Supreme Court decision would be a major setback in their efforts to engage men who have sex with men (MSM) in healthcare and HIV/AIDS prevention. Human Rights Watch has documented the Indian legal struggle in its publication “Epidemic of Abuse—Police Harassment of HIV/AIDS Outreach Workers,” describing events from 2001 in which police jailed NGO staff, seized HIV/AIDS materials, and sealed the offices of the Naz Foundation and Bharosa Trust. Naz eventually filed Public Interest Litigation in the Delhi High Court, which overturned the law. The suit subsequently went to India’s Supreme Court for a final ruling. The National AIDS Control Organization filed an affidavit supporting the Naz suit, stating that criminalization would marginalize MSM and make them reluctant to reveal their sexual behavior. The Supreme Court reinstated IPC Section 377. India’s central government has estimated the HIV prevalence among India’s gay population at approximately 7 percent. Dr. L. Ramakrishnan, spokesperson for Solidarity and Action Against the HIV Infection in India, said the Supreme Court decision on IPC Section 377 would be “devastating” to the HIV/AIDS fight and could reinforce discriminatory attitudes among healthcare professionals. MSM could become afraid to seek healthcare for fear doctors would report them.

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HEADLINE: Global News Arrow Trial Takes Aim at WHO rules

Trial investigators have called for a review of WHO guidelines on the treatment of HIV positive children. A recent trial with HIV positive children looked at the benefits, or not, of taking co-trimoxazole (Cotox) as a long- term prevention to infection. The trial concluded that in Africa the drug significantly reduced hospital admissions and mortality in children living with HIV. The WHO recommendations are largely based on observations made in resourcerich countries and could be counter productive in areas with higher bacterial infections such as sub-Saharan Africa. The Arrow trial, developed by the Medical Reserach Council (MRC UK) has looked at whether co-trimoxazole could safely be stopped in HIV positive children now there is wider antiretroviral therapy coverage. In Uganda and Zimbabwe 758 children over the age of three years and on ART took part in the trial. All had insecticide-treated bed nets. One half of the group was randomised to stop co-trimoxazole. The follow up period was between 1.5 and 2.5 years. The group that stopped had higher rates of hospitalisation and mortality - most hospitalisations were for malaria, 49 cases in the stopped group versus 21 continuing co-trimoxazole. There were also more cases of pneumonia, sepsis and meningitis in the stopped group (53 v 25). The conclusion was beneficial to continue co-trimoxazole after 96 weeks of ART.

WHO guidelines recommend cotrimoxazole for children under two years and those symptomatic or low CD4 who are over two years of age. For the over fives within certain guidelines CD4 above 350, the WHO recommend that co-trimoxazole can be stopped. The recommendations, say investigators, are based on observational data in Europe and the US, but with no evidence from Africa. The study authors say that trials looking at the effectiveness of co-trimoxazole were in high-income countries and not in areas such as Africa with higher bacterial infection rates. The higher rates of hospitalisation in the group that stopped co-trimoxazole was in a malaria-endemic country, Uganda and a non-endemic country, Zimbabwe. There have been concerns about resistance to anti-folates but for reasons unknown protection in adults as well as children with co-trimoxazole is significant. The Arrow trial was limited in its diagnosis capacity say researchers. TB infections were slightly higher in the group continuing cotrimoxazole. WHO guidelines need to be reconsidered says the report; co-trimoxazole is cheap,with few side effects. Resistance is already high in areas where co-trimoxazole is used as first line treatment and it would have lttle effect to stop the drug in HIV positive children - the children in the group that stopped the drug were often treated with antibiotics.

Global Fund Boost for Cote Dâ&#x20AC;&#x2122;Ivoire

Efforts to fight AIDS, TB and malaria in Cote dâ&#x20AC;&#x2122;Ivoire have been boosted by a 77 million Euro grant from the Global Fund. The country has the highest rate of HIV in West Africa, the grants will help provide treatment to 90 per cent of pregnant HIV positive women by 2016, to prevent mother-to-child HIV transmission. Another project will promote prevention Stragies in vulnerable groups.

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Spring 2014

Robert Fieldhouse

Training and Development Consultancy

Ph.D certified Proof-reading General service offered with specialisation in academic theses, articles, papers, websites and university / job applications. Your requirements will be satisfied, whether a simple check or comprehensive restructuring. Competitive rates. Contact: michaelduggan3@hotmail.com

Facilitating Change…Encouraging people to find their own solutions For training, speaking, facilitation, consultancy, mentoring and coaching on HIV and related issues, we have the right person for you. Our diverse, experienced and knowledgeable team work with: • People living with and affected by HIV & AIDS • Professionals working with HIV & AIDS • Businesses and Educational Institutions • Other Communities • Advisory boards • Campaigns For more information: Contact: Thandi Haruperi Telephone: +4420 8406 0947 Mobile: +4479 5663 0017 E-mail: info@restorego.com Website: www.restorego.com

      

   

Introducing ICROSS Dr. Michael Meegan

One of the tragic things about yet another World AIDS Day is the apathy and indifference that has emerged over the last few years. Initiatives like the Global Fund and The United States President’s Emergency Plan for AIDS Relief (PEPFAR), Most at Risk Populations (MARPS) and comprehensive care have made a huge difference but there is a growing danger of complacency among both Governments and those who are most vulnerable. Despite education there is dreadful ignorance and attitudes towards young sexually active gay men in Europe and Africa from both fundamental Christian groups and the Russian authorities. AIDS has caused more suffering and death across Africa than the last century of wars. The scale of destruction has magnified poverty and reversed much of the

progress of the last 50 years with life expectancies falling decades across the continent. ICROSS www.icrossinternational.org was at the forefront of HIV/AIDS prevention and fighting prodigies and intolerance in the 80s. It continues a very different fight now. ICROSS was among the first to establish 16

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Home Based Care and support programmes for AIDS orphans and vulnerable children. There are an estimated 2.5m new cases of HIV/AIDS every year. 40% of new infections occur among 15-24 years old. Over 75% of people living with AIDS are in Sub-Saharan Africa and Africa still counts for a half of all AIDS related deaths. One of the growing tragedies is the rapid rise of HIV among the teenagers. Fear, ignorance and the danger of social rejection are growing problems in Africa. While the vast majority of new cases occur among heterosexuals. There are sexual minorities that are especially vulnerable. ICROSS together with its partners seek to provide increased support systems to those most vulnerable. The Kenyan government’s National AIDS Control Programme identified key communities most at risk. What was left out of these was the very population among whom HIV rates are rising the fastest. Men who have sex with men make up 15.2% of new HIV infections. In 2014 ICROSS will target the National AIDS Control Programme priorities. This will include strengthening our systems and our existing HIV AIDS programmes. Since 1984 ICROSS has worked in international collaborations fighting HIV and AIDS. ICROSS was involved in the first scientific research into rates of sexual partner exchange in collaboration with Professor Roy Anderson of Imperial College and has been doing ground breaking HIV research ever since. ICROSS has reached over 130,000 people living with HIV and established one of the earliest home care programmes in

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Spring 2014

Photos by Manuel Scrima www.manuelscrima.com

east Africa. Long before the idea of absorbing AIDS orphans into local communities, ICROSS teams were implementing culturally appropriate support programmes. Decades after identifying this epidemic, ICROSS remains at the forefront of innovative research.Â One of the tragedies about World AIDS Day is that it has become a passing fade in the minds of most people; it is largely remembered by HIV organisations. Over 33 million people live with HIV, a small fraction of those who are affected by starvation and hunger. The tragedy of categorizing illnesses is that you cannot categorize the total burden of poverty. Years after ICROSS began working in the area of HIV and AIDS, UNAIDS was formed in 2004. The misleading illusion of Word AIDS Day themes has, in our belief, been unhelpful. We cannot separate youths, women, girls, men or lobbying issues. We do not believe it is not helpful to have an AIDS awareness month. There needs to be a coherent integrated sexual health strategy not divided by 300 well-funded foundations and organizations. World AIDS Day completely misses the point of the primary problem, there are almost a billion people suffering from hunger today, and there are 400 million living in slavery. ICROSS is committed to seeing human beings not as a disease of a clinical diagnosis but as equal deserving our respect and support. As Africa support and funding decline dramatically these feast days invented by multilateral organisation remain increasingly unhelpful to the poor. The international aid organizations and inept structures like USAID live a lucrative existence while the www.baseline-hiv.co.uk

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poor they serve receive a tiny fraction of public resources, that purport spent in their name. Dr. Michael Meegan, the founder of ICROSS has advocated for the last 24 years that the vast resources allocated to HIV and AIDS should be channeled directly through local communities without the extra ordinary overhead wasted by the US government. World AIDS Day, like the 740 conferences a year, is little more than the exploitation of the poor and the continued feeding of wasteful and often corrupt bilateral aid programmes. In his ground-breaking work Lords of Poverty Graham Hancock challenged the betrayal of public trust. He warned that very little of the money ever sent to Africa would ever reach the poor. How you can get involved ICROSSâ&#x20AC;&#x2122;s 2014/15 internships and volunteer programmes are now open for application. The programme will focus on the following areas:Public health Health services Human Rights Cultural anthropology Geography International Affairs

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The programme only receives 40 successful interns each year these are made up of:Gap year students Elective and post-graduate students Professionals on sabbatical If you’d like to apply please contact Danny Ngwiri at director@icrossinternational.org Why not donate online? You can donate online through their secure link or donate by bank transfer and choose any project you like icrossinaction.com/donate.html ICROSS will then give you detailed information about where your money goes.

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a child with serious diarrhoea. €8.00 a month provides a health worker to provide education and training to 20 families. €40.00 a month funds a qualified nurse to make home visits to 150 underweight children a month and provide child surveillance and education.

Here’s what your help can achieve. Malaria €3.00 buys a malaria bed-net (treated with insecticide) for a family protecting them from serious illness or death. €4.00 buys the medication needed to treat a child suffering from Malaria. €15.00 buys insecticide to protect a school for 2 months from mosquitoes. Water €3.00 a month provides safe water for a family of 6 for a month. €2.00 provides 4 bottles to provide solar disinfection for a family. €15.00 provides 3 families with clear water containers. €25.00 provides a family with a water filter. €300.00 provides a school with a rain water tank to harvest and use rainwater supplies. Malnutrition €12.00 provides essential micronutrients for 2 malnourished children for a week. €4.00 provides seriously malnourished mothers with vital supplements. €30.00 provides a milking goat to a family with underweight small children. €4.00 provides effective treatment to 18

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Online donation

+ One off donation/ Bank transfer + Monthly gift / Bank transfer + See our online shop and select a gift + Charity e-bay (sell stuff you don’t use for

ICROSS) us a donation in kind (not only money) Fundraising Organise an event for one of our projects Organise a competition in your school, work-place, among your friends Plan a dinner or Drinks-Night with your friends Run the Marathon or Trek to raise money and awareness

+ Send + + + + +

Act

+ Share + + + +

ICROSS on Facebook or Twitter with your friends Plan an Exhibition of ICROSS projects in your work, school, local area Artist/Photographer programme Email ICROSS your ideas, suggestions Corporate or family partnership Volunteer

+ Share your skills with us + Be one of their online team + Volunteer in Africa + Help ICROSS network, blog for ICROSS,

use your network to help build ICROSS and help them with their campaigns and initiatives Be a voice of the poor, give presentations and talks on our behalf

+ Lobby +

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Spring 2014

ARE YOU LOOKING TO FUNDRAISE? Open Charity Challenges Would you like to run a calendar of professionally organised charity challenges? With little or no financial commitment? Large Outdoors is one of the UK’s leading providers, working with charities of all sizes.

. . . . . . . .

Our open challenges have no minimum numbers and require very little, if any, financial committement. You simply book places as and when you need them. All of our events are “guided”, meaning we provide a qualified mountain leader to look after your participants every step of the way. All of our open events are guaranteed to run. All of our guides are experienced Mountain Leaders and all hold a valid first aid certificate. Routes risk assessed and all events are fully insured. Our website can manage the participants’ bookings, further freeing your administration of the event. We can help you with pre-event marketing and promotional material, from providing images and text through to offering you discounts with our design partner for the production of posters and flyer. All participants receive a certificate of completion.

For further details and a copy of our Open Challenge Brochure please contact Gareth: Tel: 0161 401 0460 Email: Gareth@LargeOutdoors.com

25% OFF ALL 2014 EVENT PLACES!*

www.largeoutdoors.com

*Discount off the charity discount price on pre-booked places only, min 10 places per event / date and must be booked by Februay 28th 2014

How do you know that you are getting the best life insurance advice?

Chris Morgan

As Independent Insurance Advisers our job is to research the whole of the insurance market for each client that approaches us. This means that we are obliged to select the most appropriate product from the market place for that client’s financial needs and medical history. Over the last two years we have conducted many different types of research into the financial needs of the HIV community and each week we discuss the changing shape of the HIV Insurance market with the products providers and continuously lobby them for change and improvements. We can certainly report that things are most definitely improving for the better in both the long term price that companies charge for HIV insurance cover, and also the criteria that companies are willing to accept applicants for insurance. Here’s a recent example of a case we have completed. One of our clients, David told us …“I’ve been trying to get insurance for my new mortgage that I’m taking through my bank and I’m reluctant to share my HIV positive status with their financial adviser. The mortgage is for an amount of £173,000 and I’m due to complete the house purchase next week. I’m concerned that I might not be able to get insurance because most of the companies that I have spoken to require that I’m on medication before accepting me. My CD4 count is very strong and my viral load very low, so my consultant has advised that I don’t currently need to be on medication.” An improving situation We have recently published the results of our “HIV Life Assurance Survey 2013” 20

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which has once again shown an increase in the number of product providers offering HIV life assurance, with 70% of insurance companies now offering products to the HIV community.

‘70% of insurance companies are now offering products to the HIV community.’ This is a great improvement from two years ago when this figure stood at only 50% and of course four years ago when only a single company was offering cover. This growth in product providers has meant improved choice and improved terms under which HIV positive people get life insurance cover. There are now seven insurance providers in the market with all of them having widely different criteria under which they offer cover. For example some insurers have a minimum CD4 count of 300, where some other companies require a minimum CD4 count of 600. Over the last four years we have constantly been lobbying insurance companies for improvements where we could see benefit for HIV positive people and we continue to raise issues of concern with the insurers where we feel change is both realistic and achievable. Areas that we have recently been able to achieve changes in include; an increase to maximum age that insurers are willing to cover people until, and more willingness to accept other medical conditions that people with HIV are commonly diagnosed with such as depression, high cholesterol and asthma.

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Spring 2014

And David? We recently arranged a HIV life assurance policy for the first time for someone with HIV who was not currently on medication. This has given us great hope for the future that Insurance companies will continue to improve the criteria for acceptance for the HIV community. The policy that we completed for David was for a sum assured of £173,000 over a term of 10 years at a premium of £52.17 per month. We always assess the whole of the market to attain the best price and terms for every client that approaches us for independent advice. Unusual Risks make donations to charities NAM/AIDSMAP and The Hepatitis C Trust from every life assurance and mortgage we arrange. We have brochures and PDF Fact Sheets now available to charities, support workers and medical professionals.

Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. Editor www.unusualrisks.co.uk, of Positive Finance Magazine and was www.positivefinance.info a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email chris@unusualrisks.co.uk

Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists

Call us: 0845 474 3075

Web: www.unusualrisks.co.uk e-mail: enquiries@unusualrisks.co.uk AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage.

Baseline Ad Unusual Risks.indd 1 www.baseline-hiv.co.uk

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14/07/2011 10:01

Engaging with The New NHS When the Health and Social Care Act 2012 came into force - on 1st April 2013 - it fundamentally changed the way the NHS is organised and how it works. It is not easy to assess how these various changes will affect people living with HIV, but the Department of Health has asked for ‘systemic patient involvement’: “If the fundamental purpose of the Government’s proposed changes to the NHS – putting the patient first – is to be made a reality, the system that emerges must be grounded in systematic patient involvement to the extent that shared decision making is the norm.” For over a year now I’ve been trying to get ‘involved’. New Clinical Commissioning Groups (CCGs) were set up on 1st April 2013. All GPs and General Practices in England are now part of a CCG. But some health conditions have their services commissioned nationally, and not by the GPs/CCGs. They are called specialised services, HIV is on this list; therefore NHS England commissions and pays for services for HIV. To contribute to the development of specialised services, the Clinical Reference Groups (CRGs) were formed. Patients who want to be ‘involved’ with HIV treatment development can work through their CRG. There are 74 different CRGs, and they compete for NHS England funds. For patients of all kinds, our health and social care is managed through collaboration between the GPs/CCGs and the Councils. Local authorities help us ‘joinup’ health care with poverty, employment, housing, education, public safety and the environment through: Local Healthwatch. The Health and Wellbeing Boards.

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Roy Trevelion

The committees for Joint Strategic Needs Assessments (JSNAs), which describe the current and future health and wellbeing needs of its local population. The Councils’ Health Scrutiny Committees, which scrutinise matters relating to health and public health and hear the views of local residents. But despite all these temptations for patient involvement, I plumped to attend my own CCG’s Governing Body Meetingsin-Public (Camden). Our CCG has a Patient Representative elected to the Governing Body. Patient involvement is possible with individual General Practices, but it can be restricted to online virtual involvement. So I ‘engaged’ with the GPs in person, through the CCG Governing Body. The Meetings-in-Public last for over two hours, and during this time the Governing Body reads, and votes on papers for commissioning plans for many different conditions. The likelihood of financial risk is also debated. At the end of the meeting each member of the public may ask a single question, which must be related to one of the debated Papers. As we know HIV treatment isn’t commissioned through the CCGs – consequently it’s not debated. (But it is included as part of Public Health prevention services for sexual health). I’m still in conversation with my CCG, and I will continue to ask them to include HIV on their list of Long-Term Conditions (such as diabetes). Today, we must use our influence to persuade our GPs that antiretrovirals might not protect us from illnesses prevalent in the general population – such as heart disease or osteoporosis – and ensure that our lives continue to be as fulfilling as possible as we grow older.

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Spring 2014

Support for people living with HIV or Hepatitis C in Scotland From our bases in Edinburgh, Glasgow and Inverness, Waverley Care offers a wide range of support, information and advice across Scotland.

We are here for you â&#x20AC;&#x201C;

www.waverleycare.org

Tel: 0131 558 1425

Email: info@waverleycare.org

Scottish Charity No. SC036500

Just Diagnosed (in the last 2 years)? or struggling with what it all means? Is your partner or relative HIV+? A free six week programme to help you get answers to what you really want to know about living with HIV and your future. For more info or to book a place contact Matt Tel: 01384 243220 www.info@shsl.org.uk twitter: summit_house

Positive Futures

a clear path forward living with HIV

Photo posed by models

Poppy: Ageing Study Recruiting Now

Professor Caroline Sabin

BASELINE readers are well-aware of the dramatic changes that have taken place to the health of people living with HIV since the introduction of effective antiretroviral therapy. As a result, people living with HIV are now living into their 50’s, 60’s and beyond, a possibility that could barely have been considered a decade ago. Indeed, we estimate that around 1 in 5 people receiving care for HIV in the UK are now aged 50 years or older, with this proportion expected to increase over time. In the general population, as people age they become increasingly likely to experience many health problems, such as problems with their heart, kidneys and liver as well as loss of bone strength, which may lead to osteoporosis and an increased risk of broken bones. Several research groups have suggested that these conditions may start to occur at an earlier age in people living with HIV. There are several reasons why this might be the case. The inflammation that HIV is thought to cause may increase an individual’s underlying risk of some of these conditions. In addition, the antiretroviral treatments used for HIV may, in some instances, increase the risk of these conditions. However, we

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also know that many people with HIV have lifestyles and participate in activities that may also result in an increased risk of these conditions. For example, a high proportion of people living with HIV are smokers, and this is an established risk factor for many cancers and for heart disease. Thus, it is hard to establish whether these conditions do indeed occur ‘prematurely’ in people with HIV, as has frequently been reported, or whether we are just seeing events that would have occurred anyway, but which had previously not been seen as few individuals had survived to this age in the past. It is important to understand which of these explanations is most likely to be the correct one so that those living with HIV can take appropriate preventive measures to reduce their risk. If, for example, inflammation is shown to play a role, then additional drugs could be identified that would directly target the inflammation caused by HIV and which could be used in combination with standard antiretroviral regimens to prevent both HIV and non-HIV related health problems. If lifestyle factors play a prominent role, then additional support could be provided to help people living with HIV to modify these, such as smoking cessation programmes,

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Spring 2014

dietary advice, etc. It may, of course, be the case that all three explanations may contribute to a certain degree; knowledge of the relative importance of each explanation would then be useful to allow clinicians and their patients take measures that are most likely to lead to a benefit to the person’s health. To try to tease out the relative importance of these possible explanations, several research groups have started to recruit people living with HIV to ageing studies. These are usually observational studies in that no intervention (e.g. a drug treatment) is applied, but investigators simply monitor what happens in a real-life setting. In a cohort study, a particular type of observational study, a group of individuals is followed over time to establish the likelihood that an individual in the study will experience a particularly health problem at any given age. Cohort study investigators may also recruit a group of ‘controls’ without HIV for the study – these are often, although not always, individuals who have been recruited from general population or from a similar hospital setting. By comparing the likelihood of each health problem occurring in the people living with

www.baseline-hiv.co.uk

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HIV to that seen in the control group, the investigators hope to establish whether there is, indeed, a higher risk of each event in HIV positive people compared to those without HIV at any particular age. This is a standard approach in many research settings. However, this approach is only appropriate if the control group have similar lifestyle and demographic characteristics as those with HIV (essentially, if HIV had not entered the equation, the two groups should have the same underlying risk of each health problem). If this is not the case, for example, if the control population has been recruited from a population whose lifestyles are very different to the HIV positive population, then any comparisons are likely to be misleading. Until now, there has been no large HIV and ageing study in the UK. However, the POPPY (Pharmacokinetic and Clinical Observations in People over Fifty) Study has now opened for recruitment at several clinics in England and Ireland. The study is co-lead by Dr Alan Winston (St. Mary’s Hospital) and Professor Caroline Sabin (UCL) and aims to recruit 1000 people living with HIV aged >50 years as well as 500 younger (<50 years) HIV positive people as a control

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sample, and an additional control sample of 500 appropriately-matched HIV negative people aged >50 years. The study is being performed at six clinics in England (St. Maryâ&#x20AC;&#x2122;s Hospital, Mortimer Market Centre, Chelsea & Westminster Hospital, Brighton, Homerton Hospital and Kings) and one in Dublin (Mater Misericordiae Hospital). To be eligible for the study, you would need to be in one of the following groups: 1) white gay men, 2) black African men or women thought to be have acquired HIV through sex between men and women, or 3) white men or women thought to have acquired HIV through sex between men and women. Due to the small numbers of people that the study could recruit, anyone with a history of injection drug use is excluded. The primary aim of the study is to describe the type of health problems that occur in older HIV positive people and to compare these to the health problems seen in the two control groups. In addition, the investigators wish to look at how these events are managed by clinicians (e.g. what treatments are used, what healthcare resources are used) and what the outcomes are of each condition (e.g. how long does it take people to recover from each condition, are there any long-term residual effects of the condition). The study will also investigate any differences in bone density or pain experienced by people in the three groups, as well as differences in cognitive function between the three groups and will assess the timing of, and effect of, the

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menopause on outcomes in women. Several sub-studies are planned that may consider other factors, such as socioeconomic status, quality-of-life, physical and neurocognitive functioning. Within the HIV positive groups, the study will also investigate whether there are any associations between antiretroviral drug levels, age, and any other medications that study participants may be receiving. Anyone who participates in the study will be seen once per year over three years. It is anticipated that each visit will take around 2 hours. The study will have no direct impact on any personâ&#x20AC;&#x2122;s healthcare. If you are attending one of the participating clinics and think you may be eligible for the study, please ask your doctor. HIV negative controls will be recruited through HIV/genitourinary medicine clinics, the HIV/gay/African press and various community organisations. Over the next few years, as we start to obtain results from the POPPY study and other similar studies running in other countries, we hope to increase our understanding of ageing and ageing in the context of HIV. This will allow clinical services to focus on the healthcare and screening needs most appropriate for people living with HIV for many years to come. For more information contact: Andrew Whitehouse 0207 594 3414 a.whitehouse@imperial.ac.uk Dr Alan Winston 0203 312 1603 a.winston@imperial.ac.uk

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Spring 2014

running low..? Living Proof

Residential Weekend

2014 28 - 30 March 11 - 13 July 26 - 28 September 12 - 14 December

Cost: ÂŁ85 NLTSG can offer funds to cover travel costs

National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more Registered Charity 1040586

E: mail@nltsg.org.uk W: www.nltsg.org.uk

Positive Coaching Partnership

Andy Hilton

What is Personal Coaching? Coaching is simply a focused conversation between the coach and the client. Coaching is about getting the very best out of you, the client, and enabling you to make decisions that will improve your life. The role of the coach is to support you in achieving your goals. Coaching should not to be confused with advice or guidance. The coach does not have the answers to your issues and it is not the coach’s job to tell you what to do or to be a source of information. Whereas a counsellor might delve into your past to root out the source of your issues, coaching accepts you as you are and looks towards the future. All the achievements that you get through coaching are a result of your own actions – a coach will never give you the answers; they support you to find the answers for yourself. Coaching can be applied to just about any part of life, personal and professional. Some typical reasons why a client may wish to work with a coach are to: Build confidence and self-belief. Help make decisions about getting back to work - what to do and how to keep motivated during the process. Build better relationships – personal and professional. Find personal peace of mind. Explore a general desire to ‘get sorted’.

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Coaching is about getting the best out of you by helping you to focus on what you can control rather than dwelling on things that you cannot. The interactions are all client-focused that is, they are focused on the issues that you want to address rather than working to a set agenda. How does it work? On a practical level, the coach and client set up a series of telephone calls at mutually agreeable times, typically weekly or fortnightly. Each call lasts around 50 minutes. The client only needs access to a quiet space with a telephone, and paper and pen if they want to take notes.

“I gained my confidence and started looking at the positive things in life and I also believe through the coaching sessions I am a better person than before.” During the first couple of sessions the coach will help you look at your whole life situation, your plans and desires for the future and then help you to decide the main things to work on that will make a real, positive difference. In subsequent sessions, you will work on a specific issue that will help build towards your larger goals. You make progress through taking action so, within each session, you will decide on one or more actions to take that will move you in the right direction. You will be encouraged

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Spring 2014

Achieve your personal goals.. to complete these actions before the next session. These individual actions can be quite small in themselves but build towards the bigger picture. You will begin to experience that you can take control and do things to improve your life situation. Coaching by telephone is highly effective and has a number of benefits: Removes the difficulty of travelling to a support centre – you can stay at home or other convenient location. Enables support for people living in rural or social isolation. Sessions can be scheduled at various times to suit your preference. Saves travelling time and expense.

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What have others said? ‘Coaching was about making our lifetime ambition happen. It is now happening. The techniques I have learned will continue to support this new life, and will ensure that I prioritise self care to ensure I remain in good health.’ ‘(Coaching gave me) Awareness, understanding and knowledge of self. www.baseline-hiv.co.uk

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Reduced internal conflict. Looking after myself so can look after others.’ ‘I’ve learnt during my time in coaching that its OK to be you.’ Who is Result CIC? Result CIC (Community Interest Company) is a not-for-profit organisation set up to offer coaching and training opportunities to people living with disability or long-term illness, and other marginalised groups within society. Andy Hilton, Director of Result CIC, has been living with HIV for many years and is Chair of the National Long-Term Survivors Group (NLTSG). The other Directors of Result, although not HIV positive, each live with a disability or longterm health condition. Result have been offering a telephone support service to people living with HIV for over 8 years, with funding coming from various sources. During 2010-2012 Result successfully ran a telephone coaching programme for PLWHIV funded by the Elton John AIDS Foundation (EJAF). On this programme Result provided coaches for 80

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people from various parts of the UK and all of the participants were referred to by HIV support organisations.

‘All the achievements that you get through coaching are a result of your own actions.’ The programme was really successful in meeting and exceeding its aims. The following is an extract from the independently compiled end of project report: “We can see that the average (evaluation) score increases from 24.4 out of 40 before coaching to 31.7 after and 31.5 six months later. This is an increase in average score of around 30% which does not drop even 6 months after the coaching has finished, which shows a positive lasting effect of the coaching. The highest increases in score are for self-confidence, confidence in career and confidence in finances. Overall wellbeing / happiness also showed a significant increase.” Result have recently been successful in securing a grant from Awards for All England (National Lottery) to continue this work. Many of the clients that we have worked with over the years have been referred to Result by a local HIV support agency. One of the primary focuses of the grant from Awards for All is to allow Result to offer the service to anyone living with HIV in England, especially those who cannot, or do not, access an existing HIV support service. In particular Result would be keen to work with people who are isolated due to: Geography: living in a rural area or low HIV prevalence location. Culture: find it difficult to use existing HIV support services. Disability, ill health or impairment.

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What is on offer? We are offering six 50-minute coaching 30

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sessions at no cost to you – Result can even pay for the phone call. For those who find it difficult to use the phone, or simply prefer it, Result can hold coaching sessions using instant messaging services such as MSN Messenger, Skype IM or Google IM. And, if you prefer to see who you are working with, Result can use Skype with video as a further option. It’s your choice! If you think that coaching might benefit you get in touch for a quick chat. If you want to go ahead there is a very short enrolment form which can be completed over the phone and then you will be allocated to one of our coaches to get started. Feedback from PLWHA “This opportunity has changed my life and I would recommend this to anyone who wants to make changes. I feel this has been a very encouraging process for me. I would never have applied to attend university without this support.” “I gained my confidence and started looking at the positive things in life and I also believe through the coaching sessions I am a better person than before. It made me realise there is something good out there and for me to get it I just have to believe in myself.” What do I do next? Telephone Result on 07582 629 560 (this is a dedicated number for this service so you can leave a confidential voice or text message) or email us on: info@resultcic.com www.resultcic.com

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Spring 2014

Renaissance at Drugline-Lancashire for those living with and affected by HIV Healthier Living with HIV in Lancashire and Blackburn with Darwen The SHIVER Project in Blackpool • Social care • Advice and information • Campaigns and health and wellbeing promotion • Counselling • Peer support • Dedicated Carer support • Older HIV Programme • Training • Volunteering Contact details Healthier Living with HIV 2 Union Court Union Street Preston PR1 2HD Telephone 01772 253840 Fax 01772 887927 SHIVER Project 102 Dickson Road Blackpool FY1 2BU Telephone 01253 311431 Fax 01253 312226 www.druglinelancs.co.uk FB Renaissance at Drugline-Lancashire Twitter RenaissanceDLL

Positive Parenting and Children Have you thought about fostering?

e are recruiting Foster Carers for our W OFSTED Registered specialist short break Support Care Service for children with families living with HIV. e are looking for sensitive, skilled, W flexible and resilient people who can look after children in their homes, and are able to commit to a minimum of four weekend nights per month. To apply You can be: single or a couple, male or female, with or without children, in or out of work but able to work in the UK, of different cultures or religion, affected or not by HIV. You will need a spare bedroom and be within easy reach of South London. For your information pack or for further discussion, please contact our office. Positive Parenting and Children We are an established and experienced provider of HIV support services for children, young people and families in South London. We are a warm and responsive organisation, able to understand and support you and your child’s needs through our group work, counselling, mentoring, short breaks, activities or direct family and social support at home.

TEL: 020 7738 7333 EMAIL: office@ppclondon.org.uk WEB: www.ppclondon.org.uk TWITTER: @LondonPPC Registered Charity No. 328427, Company No. 2439431

Increasing HIV testing uptake in primary care...

Jayne Lewis

Late diagnosis of HIV, after the time at which treatment should be started, remains a major challenge in the UK. Earlier diagnosis improves long-term outcomes and reduces the reservoir of infection where undiagnosed people unknowingly transmit the infection to sexual partners. In an effort to drive uptake of testing, the latest government guidelines recommend that GPs should offer more testing in the community, particularly in areas of high HIV prevalence.

‘GP testing is very cost effective, as detecting and managing HIV at an early stage has been shown to result in huge savings to the NHS.’ Testing all new GP registrants and offering rapid HIV testing to people presenting with a range of clinical symptoms that could indicate early infection are the main focus and GP practices around the UK are evaluating the best way to deliver improved services. Traditionally, GPs have been fairly reluctant to broach the issue of HIVdoctors don’t ask and patients don’t tell – and they are often poor at recognising early indicators of the disease. More than half of people with HIV experience symptoms in the first few weeks of the infection and this symptomatic period, commonly known as ‘primary’ HIV infection, usually lasts 2-3 weeks. Although these symptoms might cause someone to visit their GP, they are fairly non-specific and are therefore often missed as possible signs of HIV. Current HIV guidelines identify 37 clinical indicator conditions for adult HIV infections that should prompt an HIV test, but this high number is difficult for GPs to work with in everyday practice. However, 32

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a case-controlled study in primary care has shown that 12 particular symptoms or conditions are highly predictive of HIV infection; pneumonia, persistent weight loss, persistent swollen glands, persistent diarrhoea, low platelets, low neutrophils, low lymphocytes, unexplained fever, NonHodgkin’s lymphoma, sexually transmitted infections, shingles and oral thrush. A number of GP practices around the UK are now evaluating whether these 12 indicator conditions could be used routinely in general practice to identify patients that should be tested for HIV. The availability of rapid HIV tests that can be performed in the GP practice offers the potential to perform an immediate test and discuss the results in a single visit. Near patient testing removes the potential stigma of going elsewhere for a test and eliminates worrying delays waiting for a result, making the procedure more popular with both doctors and patients. Early studies indicate that that this approach is workable for GPs and, combined with screening all new GP registrants, could provide a framework to drive increased uptake for testing and identify new cases that would have otherwise been missed. From a financial point of view, GP testing is very cost effective, as detecting and managing HIV at an early stage has been shown to result in huge savings to the NHS. The 12 HIV indicator conditions approach has yet to be refined, but it seems clear that it can help GPs to recognise the possible early signs and symptoms of HIV and increase the likelihood of diagnosis and comply with Public Health England’s recommendation to screen all patients in areas of high prevalence of HIV.

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Spring 2014

Optimising HIV diagnosis and management Our aim at Alere is to improve the diagnosis and management of people with HIV by delivering critical lab quality results in the clinic or community.

alere.co.uk

HOTLINE: News and Events

Gays of Manchester Calendar

George House Trust has teamed up with photographer Lee Baxter to create a calendar that shows the diversity of the Gays of Manchester, to raise money for the charity. The 12 portraits highlight the different backgrounds, such as musicians, gay couples, owners of retail shops, and a baker to bring to life stories of Manchester and gay life. The 2014 Calendar, is available to buy in various bars in the Manchester’s Gay Village and online via gaysofmanchester.co.uk Through sales of the calendar GHT is hoping to raise over £10,000 for their Welfare Fund, which helps HIV Positive People who are facing financial hardship. George House Trust (GHT) supports people living with or affected by HIV and was founded in 1985 by six gay men in Manchester. Rosie Robinson, Chief Executive of George House Trust told BASELINE: “By buying one of these calendars you are not only getting a really beautiful thing to keep for yourself or give as a gift, but you’re also doing some good for a great charity.”

Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk 34

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Spring 2014

Stonewall to Obama

A story of sound, rhythm, style and the power of music to transform a culture. It’s about rock and roll, pop, disco, rap, funk, soul and R&B. It starts with the sounds heard on June 28, 1969 that ignited a revolution and lead to arrests, demonstrations, loss of life, political unrest, anger, fear and a plague. But, most importantly, this is a story of celebration! It’s the story of the gay anthem and how it empowered a group of second-class citizens to find its voice and claim its rightful place in society. This is the soundtrack to the modern human rights movement. Stonewall to Obama is a coming of age story at the time of Stonewall and the AIDS crisis. It’s a haunting love story that’s told through the lens of pop music. This is the story of the generation that ignited a revolution and was then wiped out by AIDS. Get it at amazon.co.uk

A forgotten generation: Long-term survivors’ experiences of HIV and AIDS by Judy Sagar

A truly wonderful collection of stories, voices, perceptions and personal experiences of a group of long-term HIV survivors. The book provides insight into the optimism, fears, anxieties, hopes, and uncertainties prevalent during the pre-HAART era and explores inspiring examples of positive living post the advent of effective treatment. The book explores how living long-term with HIV has impacted on peoples’ sense of ‘self’. This is the most passionate story-of-stories which allows the reader to become intimate with all the story-tellers who shared their personal experiences of living long-term with HIV and AIDS. Available at amazon.co.uk

‘Fu*k AIDS’ by BANDCAMP and BOB A song inspired by a young man whose uncle had died of AIDS 26 years ago who, at a World AIDS Day said, ‘All my life we’ve been raising money to fight AIDS - I’ve had enough of AIDS, let’s end this shitty illness – fu*k AIDS!’ Available on iTunes and Amazon at 79p a download. All the money raised will be donated to NAT. See the video on YouTube at www.youtube.com/watch?v=3Z8XkQqvyDY Follow the band on Twitter @F_AIDS@bandcampandbob www.baseline-hiv.co.uk

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HEADLINE: Treatment News Boosted PI plus lamivudine looks potent

EACS Launches New EU Treatment Guidelines An updated version of the European AIDS Clinical Society (EACS) guidelines for the treatment of HIV, was presented at the 14th European AIDS Conference in Brussels. In line with recent British HIV Association guidelines the EACS guidelines have kept a CD4 cell count of 350 as the point at which someone would be typically offered HIV therapy. The guidelines stress the importance of the discussion between patient and provider to identify the right time for an individual to start and make clear recommendations about starting treatment earlier than 350 if an individual had chronic hepatitis B or C, TB, cancer or was pregnant. The EACS guidelines state that ART should be considered both “to reduce transmission of HIV” and for “asymptomatic HIV infection”. They also state what they mean by “considered”: “Use of ART should be considered and actively discussed with the HIV-positive person; under these circumstances, some experts would recommend starting ART whereas others would consider deferral; this clinical equipoise reflects that whereas certain data, such as hypotheses on pathophysiology and chronic immune activation, support starting ART, this needs to be balanced against the risk of known or undiscovered adverse drug reactions from use of ART. The risk/benefit ratio for use of ART under these circumstances has not yet been well defined.” The guidelines can be downloaded from www.eacsociety.org/Portals/0/Guidelines_ Online_131014.pdf 36

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A two-drug combination containing the protease (lopinavir/ritonavir plus lamivudine, also known as 3TC) for HIV did as well in controlling the virus as a standard triple-therapy regimen, researchers found. After 48 weeks of therapy, 88.3% of patients had an undetectable viral load. Grade 2 and 3 side effects were reported more frequently among those taking three medicines and more people stopped therapy for reasons of toxicity and tolerability. In total 426 people who had never used treatment before took either a ritonavirboosted protease inhbitor lopinavir (Kaletra) plus lamivudine or lopinavir/ ritonavir plus either lamivudine or emtricitabine (Emtriva) in combination with another nucleoside reverse transcriptase inhibitor selected by the researchers. On average, increases in CD4 cells over the 48-week course of treatment were similar -- 227 and 217 cells per cubic millimetre of blood for dual- and triple-drug therapy respectively. Spring 2014

Once-daily Raltegravir Evaluated

Raltegravir is licensed to be taken as a 400mg tablet twice-daily, but it’s possible that some people could use the pill safely and effectively at a once-daily dose. Sixty-eight of 71 people who had previously successfully been treated (2 undetectable viral loads in the previous 6 months) switched to once-daily raltegravir with a viral load below 50 copies maintained virological suppression for 48 weeks in an observational study at a Paris hospital. The 3 people who all experienced virological had previously experienced treatment failure with nukes. Despite the high response rates to the use of once-daily raltegravir the researchers concluded, “once-daily raltegravir cannot be recommended in place of twice-daily dosing.” But a team at the Hopital Pitie-Salpetriere in Paris noted that once-daily raltegravir was non-inferior to twice-daily raltegravir among patients with a pretreatment viral load below 100,000 copies.’ The French researchers concluded that switching virologically suppressed people to once-daily raltegravir is effective through 48 weeks as long as raltegravir is taken “with a fully active backbone regimen.” Merck, the manufacturer of raltegravir recently announced that it intends to initiate a Phase 3 clinical study looking at once-daily raltegravir in early 2014.

Docs and Patients Don’t Always Agree What’s Important with Therapy

New research highlights the subtle differences doctors and patients place on attributes of HIV medication, with docs placing more emphasis on the effectiveness of therapy and patients placing more importance on the avoidance of side effects. The study included 200 people living with HIV, the majority (65%) treated in London with an average time since HIV diagnosis of 11 years. In total 67% of the people living with HIV were white, 46% were employed. One quarter of the patients had been taking treatment for 4 to 6 years- with similar proportions having taken treatment for 7 to 10 years and 10 years or more. Overall one third (32%) had changed HIV therapy 3 or more times. One third of the 125 doctors included in the study practiced in the London area (29%). Overall 83% of them prescribed efavirenz, while 2% prescribed the protease inhibitors lopinavir, darunavir or atazanavir. For people living with HIV treatment effectiveness and long-term safety profile are the most important factors when www.baseline-hiv.co.uk

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making treatment choices. For every 1% increase in the chance of undetectable viral load after one year the odds of a patient choosing that treatment rose by 3%. People with HIV placed the most importance on the avoidance of daily side effects such as rash, diarrhoea and jaundice. Doctors, by comparison, placed greater importance on the effectiveness of treatment in terms of viral load compared with people living with HIV. Doctors placed very little importance on the avoidance of rash and diarrhoea. For every 1% increase in the chance of undetectable viral load after 1 year the chance of doctors preferring that treatment increased by 11%. There was some similarity in the responses of doctors and people with HIV in relation to avoiding the risk of heart attack and psychological effects. The researchers concluded that considering the patient perspective when making treatment decisions may result in improved adherence and better treatment outcomes.

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PROMS and PREMS Mark Platt

As HIV treatment becomes more proficient at keeping more of us alive for longer, the issue of our overall health is an increasingly important matter for us and for those caring for us. How our HIV care is provided, how it connects with other health services that we use, or other care services, and of course how our various medications interact and affect our health these are all things that can leave us feeling dissatisfied or unhappy and, at the extreme end, can undermine the benefits given by our HIV medicine. Being able to identify these things, and see if they are specific or generic issues requires information and collecting that information requires that a systematic approach be taken across all HIV services. In medical language, these systematic information systems are called PROMs and PREMs. PROMs, Patient Report Outcome Measures, are questionnaires that ask people about how their treatment is affecting their health and their lives. PREMs, Patient Reported Experience Measures, are also questionnaires, but they ask people about their experience of how their treatment and care is provided. These questionnaires are already used for a number of long-term ‘chronic’ health conditions, like diabetes and breathing 38

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disorders, where they have helped to identify where things are not working and enabled improvements to be made. As HIV is now very much a chronic condition, HIV clinicians have been keen to bring this approach to HIV care. So in May 2013 the British HIV Association (BHIVA) started a project to see how best to used the methodology used in PROMs and PREMs to create a similar tool for HIV. As the two community representatives on the project board my colleague Alice Welbourn and I have been keen to ensure that this project is built with full community input from the start, so that the questions and the guidance that accompanies them reflects the things that people living with HIV really want. We are currently in the first consultation stage for the project, asking basic questions about how, where and when and have been keen to engage with as many individuals and groups as possible. NAM has emailed details of the project, including reading materials and a link to an online survey, to its extensive database, and we’ve already had a good response. In addition to this online engagement, Alice and I have been going out and talking to support and community groups, and hearing their wants and needs for this work. Although this is a smaller exercise, it has

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Spring 2014

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delivered some helpful and interesting information about the what, where, and most excitingly, what they want to see done as a consequence. This first part of the process will run until the end of December, after which the project group will review all of the responses and use them to construct a draft PROM and PREM, which we will them take out to the community for further comment and critique. As far as we’re aware this is the first time that this approach has been used to build this type of improvement tool and the community feedback we’ve had so far has certainly been extremely insightful. But we need and want more! So if you want to get involved, go online and fill in our survey, or if you’re involved with a community group, host a meeting to discuss the issues, then please send us a note of your discussions. We all want good care, and good services, but often we’re in the back seat when it comes to the decisions about either. This is our opportunity to take to the steering wheel, so let’s grab it. Link to questionnaire: www.surveys.bhiva.org/ fsConsultCommunity.aspx

HIV +VE PEER SUPPORT in SOHO www.GMG.org.uk

WHAT WE DO:

.. . . .

Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members

WHY DO WE MEET?

. .. ..

Let off steam about, and help find self-acceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men

WHERE & WHEN?

Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)

WANT TO ATTEND A MEETING? If you’re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php

www.baseline-hiv.co.uk

Mental health treatment as prevention in HIV infection

Angela Lavery

During the past 30 years we have seen many advances in both the treatment and management of the condition The ability to eradicate the virus continues to elude us and in its absence the greatest impact we can have is to limit the spread of the virus and improve the treatment, support and quality of life for people living with it. The prevention of HIV transmission is not a new concept, but the ways in which this can be achieved are constantly being evaluated and built upon. Perhaps one of the newest additions to this is the concept of ‘treatment as prevention’ (TasP). This essentially relates to the use of HIV drugs to prevent HIV infection and onward transmission. This article focuses on the contribution of mental health and psychological intervention to HIV prevention. Treatment as prevention refers to the use of highly active anti-retroviral therapy (HAART) to reduce the likelihood of HIV transmission. This works by reducing viral load and has been used in the reduction of mother-to-child transmission and post an HIV exposure event. Anecdotally it has been suggested that people with undetectable HIV viral loads, especially those on therapy, are less likely to transmit HIV than people with a detectable virus. Now this is evidenced by the results of the HPTN 052 study which showed that HAART reduced the risk of HIV transmission to sexual partners by 96% and has now made HIV treatment a new priority for prevention. Let’s consider the contribution of mental health and psychological intervention within this. There are many ways in which good mental health is important in HIV and can 40

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directly influence outcomes. Firstly, people with pre-existing mental health problems are at a higher risk of acquiring HIV than those without. This likely relates to vulnerability, stigmatisation and health inequalities. It follows that if we improve the mental health of the general population, alongside other prevention interventions, we could reduce the number of people newly acquiring HIV. Secondly, there is now a wealth of evidence that people with HIV have higher rates of depression, suicidal thoughts and anxiety and most other psychological disorders than the general population. This is attributed to psychological reactions and adjustment to diagnosis, but exacerbated by vulnerability factors in people disproportionately affected by HIV who often face many additional challenges such as homophobia and racism. In addition to depression and anxiety, other difficulties commonly seen in people with HIV include; sleep problems, sexual difficulties and low self-esteem, low self-worth and lack of confidence, often compounded by feelings of shame and being ‘dirty’. The physical health advances achieved with HAART have resulted in greater life expectancy and with this an increase in many of the psychosocial challenges of living with HIV, including employment, relationships, finances, stigma and discrimination and `minor’ health issues such as fatigue which can be very debilitating and possible side effects of medication which can affect functioning and quality of life. Mental health difficulties are known to adversely impact on physical health; in HIV this includes poorer health outcomes, increased frequency of hospital admission

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Spring 2014

and duration of stay as well as other costly interventions. Stress and anxiety negatively impact on the immune system’s ability to fight infection and affect the production of cells that fight infections; stress can affect your CD4 count.

‘Mental health difficulties are known to adversely impact… stress and anxiety negatively impact on the immune system.’ There is now a substantial amount of evidence that recognises the relationship of mental health problems and poor adherence. This not only affects adherence to HAART, but also hospital attendance and follow up. In studies about adherence, depression is cited as the strongest single predictor of poor adherence to drugs. Mental health problems are also positively correlated with increased risk taking. There is a clear role for mental health interventions in behaviour change which can contribute to prevention in areas such as sexual risk taking, condom use, substance / alcohol use, engaging with services and treatment adherence. Having discussed the impact and interrelationship of HIV and mental health, this article will now explore some of the outcomes achieved through the provision of a specialist HIV and mental health service at BHA Leeds Skyline. The HIV mental health service was established to provide specialist mental health care for service users living with or affected by HIV accessing BHA Leeds Skyline in recognition of their complex mental health needs and in the absence of such service provision in Leeds. The service is a ‘one www.baseline-hiv.co.uk

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stop shop’, where service users can access the range of services provided by Leeds Skyline and avoids further stigmatisation by attending psychiatric services. This is a relaxed, non-clinical setting, where service users may feel more at ease to discuss difficulties openly; facilitating disclosure of issues and concerns such as problems with treatment adherence, which they may not always discuss with clinicians. The service is provided by a specialist psychotherapist with RGN and RMN qualifications, a BSc (Hons) in Mental Health, BABCP accreditation and UKCP registration. This is in addition to more than 25 years’ experience of working with HIV, an understanding of the past and present context of living with HIV and a wealth of experience working with MSM, BME and LGBT communities. The structure of this service ensures mental health promotion is integrated and central to services at BHA Leeds Skyline, with all staff aware of and promoting mental well-being, with mental health assessed as part of a comprehensive needs assessment for all service users. Awareness of mental health is facilitated by the regular presence of the specialist psychotherapist as part of the team, promotion of mental health through general support sessions and drop-ins, as well as more formal structured service user workshops. The stepped care model recently advocated in The Standards for psychological support for adults living with HIV, has already been in place for over three years, with support workers delivering interventions at level one and two and the specialist psychotherapist at level three and four. The ‘Stepped Care’ model is a system that ensures the best use of resources to

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deliver effective treatments, so that service users receive the most appropriate level of treatment for their needs; ‘stepping up’ from levels one up to four to intensive/ specialist services as required. Support workers receive regular formal and informal supervision and needs specific training, all of which is provided by the specialist psychotherapist, consistent with Standard six. The integration of the mental health service ensures rapid access to mental health assessment and intervention, with service users typically assessed and able to engage in therapy within seven days. Mental health referral and intervention is available from HIV diagnosis and at any time thereafter, consistent with Standard 4. There is a clear referral pathway to the mental health service and all are aware of this process, as per Standard 7. In addition, this fosters relationships with other statutory services that often refer in to the service or encourage existing service users to access specialist mental health input. The specialist psychotherapist’s role involves liaison within the wider multi-disciplinary team, which is enhanced by pre-existing relationships, professional credibility and the provision of specialist advice on mental health issues. The specialist psychotherapist is a qualified and accredited cognitive behavioural psychotherapist and therefore where appropriate and practicable, the interventions delivered are formulation driven CBT (cognitive behavioural therapy) or CBT-based interventions. CBT is a type of talking therapy used to help people experiencing a wide range of psychological and mental health difficulties; the basis of CBT is what people think affects how they feel and how they behave. CBT has 42

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a strong evidence base, demonstrating its effectiveness in treating a wide range of mental health problems and CBT is therefore recommended by The National Institute for Health and Care Excellence (NICE) as the treatment of choice for conditions such as depression and anxiety. Utilising CBT for psychological difficulties experienced by people with HIV is therefore also endorsed in Standard 8. Psychological intervention can help to reduce symptoms of mental distress, as well as improving functioning and treatment adherence and therefore can have a direct benefit on physical health. This is also substantiated by evidence of improvements in immune system functioning.

‘CBT is a type of talking therapy used to help people experiencing a wide range of psychological and mental health difficulties.’ Service users are referred to the specialist psychotherapist at BHA Leeds Skyline present with a range of psychological issues and mental health problems. These include: Depression, low mood, suicidal ideation and self-harm Anxiety disorders including panic, generalised anxiety, obsessive compulsive disorder and stress Adjustment disorders, including bereavement Low self-esteem, body image problems and lack of confidence Trauma and post–traumatic stress disorder (PTSD) Alcohol misuse & other substance misuse Psychosexual problems, relationship difficulties and child sexual abuse

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Spring 2014

Sleep disorders

+ Bipolar and other psychotic disorders + Anger problems + Physical health problems related to HIV, + including pregnancy and adherence Each service user identifies their own therapy targets at the beginning of therapy and where possible and appropriate, a Clinical Outcomes in Routine Evaluation (CORE) outcome measure (OM) is completed. This is a 34-item measure, which is gender sensitive and measures problems, well-being, functioning and risk, as well as providing a total score. This differentiates between non-clinical and clinical populations e.g. difficulties likely to have an adverse impact on health. In addition, idiosyncratic and disorder specific measures are also used as part of the CBT process. Feedback is obtained on a session-by-session basis and more formally at the end of therapy. Feedback is also obtained utilising the CORE goal attainment form (GAF) and reviewing CORE – OM scores to assess reliable and clinically significant change as a result of input from the HIV mental health service. Service users are encouraged by support workers to provide feedback about their experience of the mental health service. Evaluation of the mental health service utilising data from the CORE-OM showed 85% of service users had clinical scores at the point of referral, but in contrast, at discharge 80% had non-clinical scores. This is perhaps best understood by describing the following case example (anonymised): Paul was diagnosed with HIV over 20 years ago and has faced many challenges over the years in adjusting to his diagnosis. He has had many physical health problems www.baseline-hiv.co.uk

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impacting on his quality of life and as a result of this and other social factors he has become depressed and at times has felt suicidal. Paul has accessed the mental health service on a regular basis which has not only managed the risk of harm, but also helped him to adjust to and cope with his health problems. This has included helping him to restart and adhere to his HIV treatment, which he had discontinued believing ’there was no point’. Paul has been able to readjust to his circumstances and have new goals within his limitations. This has included focusing on activity for his mood and strategies to address unhelpful thinking and behaviour patterns, which were making his depression more problematic. This has helped improve his quality of life and daily functioning. The value of mental health interventions and CBT in particular has been described to raise awareness and understanding of how people living with HIV may benefit from this type of help. BHA Leeds Skyline provides such a service, which has been positively evaluated by service users and is in keeping with the recommended standards for psychological support. Mental health interventions, such as CBT have a significant contribution to make towards preventing negative health outcomes, reducing the risk of HIV transmission and promoting psychological well–being. Preventing one new HIV infection could save up to £360,000 in direct lifetime healthcare costs. It is therefore important to include investment in and provision of psychological services when planning treatment as prevention interventions.

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2014: The Avalanche of New Hepatitis Treatments Starts Here

Contents

In the coming two or three years the kind of treatments many people living with hepatitis C are treated with will change beyond comprehension. Many of you will be familiar with the emerging concept of interferon-free therapy, making treatment both shorter in duration, less complicated to administer, more tolerable and more effective all in one go. The first often-lauded blockbuster hepatitis C medicine sofosbuvir from Gilead Sciences was recently launched in the US. The drug has also just been approved in Europe, where one in three people living with HIV are also living with hepatitis C. The price and, some experts have said, a company’s willingness to facilitate access to any new hepatitis C medicine during its late stage development to those in the greatest need (people with no treatment options or cirrhosis) will influence how readily it is taken up by prescribers and how easy it will be for pateints to access through the NHS. In the last issue we ran an article describing the hepatitis C Trust’s Gemma Peppé’s experience of participating in a clinical trial of AbbVie’s three investigational hepatitis C medicines. Many of you wrote in to ask how Gemma got on in the trial; we are delighted to tell you all that Gemma cleared the virus with treatment. We’ve passed on our and your congratulations to her. In an upcoming issue we hope to run a personal piece by an individual using Gilead’s sofosbuvir to give you an insight into the experience. In this issue we report on the Hepatitis C Trust’s Report An Uncomfortable Truth which highlights abysmal access to hepatitis C treatments here in England and are running a wonderfully touching piece by activist Andria Efthimiou-Mordaunt. Thanks Andria! Wishing you all a happy and healthy new year. Please do follow us on Twitter @BASELINEHEP

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46 headline: UK news 47 headline: global news 48 headline: treatment news 52 the uncomfortable truth 56 myline: andria efthimiou mordaunt

For magazine and web advertising please contact robert@baseline-hiv.co.uk Contact the team: Editor: Robert Fieldhouse robert@baseline-hiv.co.uk Associate Editor: Jane Phillips editor@baseline-hiv.co.uk News Editor: Chris O’Connor chris@baseline-hiv.co.uk Editorial Administrator: Tom Matthews Proof reader / Social Networking Michael Duggan / Rebecca Gibson Business Development Manager: Jo Sadler Intern: Daniel Jon Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV or hepatitis status or lifestyle.

Spring 2014

For more info and to register visit: www.waverleycare.org/whw

HEADLINE: UK News

L4L: New Charity Supporting People With Liver Conditions Liver4Life (L4L) is recently-launched charity dedicated to supporting any person affected by a liver condition in the UK. The charity offers advocacy, education and campaigns on behalf of people with a liver condition to improve their care, their treatment and their support services. L4L recognises the importance of preventing liver disease and the early detection of a liver condition, liver disease and liver cancer in the UK. Liver disease is the fifth biggest killer, and is the only one out of the ‘big five’ on the rise. Liver disease has fallen under the radar for such a long time, meaning there are not enough clinicians, services or support to cope with the rising tide of those affected. As a direct consequence some people receive inadequate care and don’t get diagnosed until their liver disease is advanced. L4L is planning on launching a free liver helpline as they understand the importance of having someone to call or email with questions you may have forgotten during your hospital appointment. You can follow L4L and friend them on Twitter (@liver4lifeuk) and Facebook (liver4lifeuk). And if you would like to get more detailed news from L4L you can subscribe to L4L’s newsletter or make a donation to help launch their helpline via their website: www.liver4life.org.uk 46

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1-in-5 Brits At Risk of Liver Disease The Chief Medical Officer has warned that 20% of Brits are at risk of liver disease. The British Liver Trust says early liver screening could save £600m and one million lives. The British Liver Trust is calling for the government to radically overhaul liver disease funding, increasing investment in early diagnosis where liver damage may be reversed. 2013 saw the NHS spend over half a billion pounds on treating more than 15,000 people with advanced liver disease. Yet education, in the form of GP consultation and early screening can be delivered at a fraction of the cost and save lives. If no action is taken, it is predicted that the money needed to combat liver disease will escalate to well over £1billion a year within the next ten years. The British Liver Trust is calling for: Greater focus placed on GPs interviewing patients about their alcohol intake, diet and fitness and risks of viral hepatitis so that patients at risk can be made aware and appropriate action taken. Andrew Langford, Chief Executive of The British Liver Trust, adds: “Over-indulging in fatty food too frequently, having an alcoholic drink every night and not making time for regular exercise are major contributing factors for liver disease.” www.facebook.com/britishlivertrust and Twitter @livertrust for more information.

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Spring 2014

HEADLINE: Global News

Coffee and Black Tea For Improved Liver Function

Hepatitis C on the Rise in Japan

There has been an increase in the number of HIV positive Japanese men who have sex with men presenting with an acute hepatitis C infection in recent years at the largest HIV clinic in Tokyo, Japan. Acute hepatitis C often has no symptoms and many people are not aware they have acquired the virus. An unexpected rise in liver function blood markers (ALT/AST) may be a sign of a recent HCV infection. The researchers analyzed medical records from 34 people living with HIV diagnosed with acute hepatitis C between January 2001 and December 2012. All except one were men and their median age was 39 years. Overall only 5 people (15%) reported a history of injection drug use. Only 6 people experienced symptoms including fatigue (18%) and jaundice, due to elevated bilirubin (6%). In total 12 patients (35%) initiated hepatitis C treatment with pegylated interferon plus ribavirin within 48 weeks of their HCV diagnosis. The 24-week post-treatment sustained virological response (SVR) rate was 80%. This is far greater than the SVR rate in most studies of people with HIV/HCV coinfected patients treated during the chronic phase of hepatitis C infection. The researchers concluded, “Early treatment with [pegylated interferon plus ribavirin] should be considered for favorable response in HIV-infected patients with [acute hepatitis C].” www.baseline-hep.co.uk

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People living with an established hepatitis C infection who drink caffeinated filtered coffee or black tea every day appear more likely to have improved liver function, indicating less liver inflammation, according to new research. Several studies have shown that drinking coffee is associated with reduced liver inflammation and lower liver scaring (fibrosis). Researchers remain uncertain if the association is linked to caffeine, plant phytochemicals, or other as-yet unidentified factors. The study included 376 people with detectable HCV recruited between August 2005 and July 2006. About 60 percent had normal liver function test results (ALT) (<45 IU/L) at the start of the study. The rest had elevated ALT. About half never drank any caffeinated, filtered coffee and the remainder were roughly split between those who drank <1 cup per day and those who drank 1 cup or more each day. People who drank filtered caffeinated coffee daily were 3 times more likely to maintain normal ALT than those who did not drink filtered coffee. Filtered caffeinated coffee drinkers also had a significantly increased chance of liver function improvement. People who drank 4 or more cups of black tea had a greater likelihood of having normal liver function than those who drank less. There was no association found between improved liver function and green tea intake. The researchers concluded, “Among patients with chronic HCV infection, daily consumption of filtered coffee may have a beneficial effect on the stabilization of ALT levels.”

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HEADLINE: Treatment News Sofosbuvir/Ribavirin in HIV/HCV Coinfected People

Impressive Results for Gilead Combo Gilead Sciences recently announced sustained virological response rates (undetectable HCV viral load 12 weeks after the completion of therapy) from three clinical trials testing a fixed-dose combination of its HCV polymerase inhibitor sofosbuvir (SOF) (Sovaldi) plus its NS5A inhibitor ledipasvir (LDV). Across the 3 studies, sofosbuvir/ ledipasvir taken for 8 or 12 weeks cured more than 90% of people with HCV alone (some of whom had used HIV treatment before). Sofosbuvir was recently approved in the USA for use with ribavirin (RBV) alone for people with HCV genotype 2 or 3, or as a third drug alongside pegylated interferon/ ribavirin for people with genotype 1. The drug was recently licensed in Europe. Gilead expects to request approval of the sofosbuvir/ledipasvir coformulation later this year, offering a single-tablet regimen for hepatitis C treatment. Across the three studies, 1,952 people with genotype 1 HCV received SOF/ LDV with or without RBV for eight, 12 or 24 weeks. Unsurprisingly researchers found fewer adverse events among people who did not include ribavirin in their combination. Mild fatigue and headache were reported among trial participants taking the combination tablet. 48

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Gilead Sciences presented data from the PHOTON-1 study evaluating the once-daily nucleotide analogue inhibitor sofosbuvir in 114 people living with HIV and hepatitis C who had never taken hepatitis C treatment before. In some parts of Europe up to 50% of people living with HIV are also living with hepatitis C. In the trial people with HCV genotype 1 were randomized to receive 24 weeks of treatment and those with genotype 2 or 3 to receive 12 weeks of treatment. Overall 76% (87/114) of trial participants with genotype 1 HCV achieved a sustained virological response (SVR) 12 weeks post the completion of 24 weeks of therapy. Additionally HIV/HCV coinfected people with genotype 2 or 3 HCV who had never taken treatment before were randomized to take 12 weeks of sofosbuvir and ribavirin. Among people with genotype 2, 88% (23/26) achieved a sustained virological response 12 weeks after treatment (SVR12), while the rate was 67% among people with genotype 3. Only 3% the study participants discontinued therapy due to side effects. The most common side effects seen in the study were consistent with ribavirin treatment; fatigue, nausea, headache and insomnia. Overall 95% of trial participants were receiving HIV therapy during hepatitis C treatment- Gileadâ&#x20AC;&#x2122;s Truvada (tenofovir/ emtricitabine) as a backbone with either efavirenz, atazanavir/ritonavir, darunavir/ ritonavir or raltegravir.

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Spring 2014

He shows all the signs of hepatitis C

Robert Fieldhouse

Hepatitis C can cause fatal liver disease With HIV it does it faster Get tested. Get treated.

hepctrust.org.uk 0845 223 4424

The Hepatitis C Trust is a registered charity UK 1104279 Scotland SCO39914

HEADLINE: Treatment News

Impressive Results for AbbVie Combo Among TreatmentExperienced

BI to Discontinue Development of Deleobuvir Boehringer Ingelheim will cease development of regimens containing its non-nucleoside hepatitis C virus polymerase inhibitor deleobuvir (formerly BI 207127), the company recently. Following assessment of data from the Phase 3 HCVerso 1 and 2 trials, which evaluated a regimen consisting of deleobuvir, the HCV protease inhibitor faldaprevir (formerly BI 201335), and ribavirin, Boehringer Ingelheim “has decided to halt further development” of deleobuvir-containing regimens, according to the announcement. In the Phase 3 trials, “the combination showed a higher rate of premature discontinuations suggesting a lower efficacy rate compared to other interferonfree therapies in development,” the announcement stated. “Boehringer Ingelheim has therefore concluded that the expected therapeutic value of the deleobuvir-containing regimen would not justify further development.” The statement went on to say that the company “will move forward with the submission process for faldaprevir,” which has shown promising results in combination with pegylated interferon and ribavirin in the STARTVerso trials. “Boehringer Ingelheim is committed to developing new treatments that provide high therapeutic value in areas of unresolved medical need,” the statement concluded. 50

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A 4-drug combination containing 3 AbbVie direct-acting HCV antivirals plus ribavirin produced sustained virological response in 96% of people with chronic HCV without cirrhosis who were previously treated unsuccessfully with pegylated interferon and ribavirin, with similar response rates for HCV genotypes 1a and 1b, AbbVie recently announced. The SAPPHIRE-II study evaluated the safety and efficacy of AbbVie’s ritonavirboosted HCV protease inhibitor ABT-450 plus the NS5A inhibitor ABT-267 in a fixeddose combination pill, taken with the nonnucleoside polymerase inhibitor ABT-333 and ribavirin. A separate study is evaluating the investigational drugs among people with cirrhosis. The study, SAPPHIRE-II, is evaluating the efficacy and safety of 12 weeks of treatment with ABT-333 (250 mg), ribavirin, both dosed twice daily, and the fixed-dose combination of ABT-450/ritonavir (150/100 mg) co-formulated with AbbVie’s ABT-267 (25 mg) and dosed once daily. In total 394 GT1 treatment-experienced people were included in the study. Overall, 49 percent of patients were prior null responders to pegylated interferon and ribavirin. The most commonly reported adverse events were headache, fatigue and nausea.

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Spring 2014

www.baseline-hep.co.uk

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The uncomfortable truth:

New Report Exposes Poor Access to Hepatitis C treatment in England Robert Fieldhouse

Low diagnosis and poor uptake of hepatitis C treatment are to blame for a rising tide of deaths from hepatitis C, according to a new report from the Hepatitis C Trust. In England an estimated 160,000 people are living with hepatitis C. Half remain undiagnosed, placing them at risk of disease progression as well as being at risk of transmitting the virus to others. Only 3% of people with hepatitis C receive treatment each year. Half of those living with the virus are undiagnosed; many people living with diagnosed hepatitis C have not been referred to specialist care or are referred but ‘lost to follow up’. Some people are still not offered treatment for medical or lifestyle reasons such as drug or alcohol use. Ashamedly deaths from hepatitis C quadrupled between 1996 and 2012, despite NICE approving treatments for everyone, irrespective of liver damage back in 2006 and treatment response rates improving further with the advent of two NICE approved direct acting antiviral hepatitis drugs in 2010. Professor Graham Foster, Consultant Hepatologist at Barts and The London NHS Trust, said: “It is a travesty that increasing numbers of patients on our wards are dying from hepatitis C when so many with early liver disease can be cured and protected from liver damage.” A large number of hepatitis C medicines 52

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are currently in clinical trials. Should more tolerable and effective treatments become available in the coming years how will services cope if there is a huge demand for access?

‘Only 3% of people with hepatitis C receive treatment each year.’ Currently only a small minority of people with hepatitis C globally have been treated. A report to the Secretary of State for Health by Professor Sir Mike Richards in 2010 ranked the UK 13th out of 14 comparable countries in its use of available hepatitis C drugs. Richards blamed challenges in the “organisation, planning and capacity,” since UK uptake was still low even when international differences in prevalence rates were taken into account. Public Health England predicts that by 2020, 15,840 people will be living with hepatitis C related cirrhosis or liver cancer, potentially requiring a liver transplant. Liver disease costs the NHS £500 million a year, a cost that is rising by 10% annually. Hepatitis C is the only type of liver disease for which deaths could be avoided through good quality healthcare. The Hepatitis C Trust is hopeful that the emphasis on addressing public health and health inequalities in the recent NHS reforms should make tackling hepatitis C a priority.

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Spring 2014

But according to Charles Gore, Chief Executive of the Hepatitis C Trust, “Four years after it was promised the Government is yet to confirm a publication date for its National Liver Strategy.” It’s almost ten years since the publication of the National Action Plan for Hepatitis C, which made recommendations in 4 key areas: surveillance and research; increasing awareness and reducing undiagnosed infections; high- quality health and social care services and prevention. But the plan failed to specify a timetable, provide any benchmarks, surveillance systems, accountability mechanisms or targets meaning implementation was patchy at best. An audit by the All Party Parliamentary Hepatology Group (APPHG) in 2010 found that only 8% of PCTs (16 out of 191 that responded) were effectively implementing the Plan’s recommendations and that ‘hepatitis C care depends on where you live.’ The same audit revealed massive variation in the proportion of people with hepatitis C being offered treatment in English hospitals, ranging from 20% to 100% of new referrals. 12 hospitals, almost one-fifth of those participating in the audit, offered treatment to less than 50% of the patients referred to them. Delays in treating patients The number of people living www.baseline-hep.co.uk

with

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hepatitis C treated in England actually fell by 6% between 2010 and 2011. It’s possible that people are opting to wait for new medicines but it may also be that services have reached the limits of existing treatment capacity. Some people may choose to delay treatment in the hope of enrolling in a clinical trial for one of the next-generation drugs. Delaying treatment can be risky for some; more rapid disease progression has been seen in certain groups of people including people with advanced liver disease, diabetes and HIV coinfection. Furthermore, mass delays could increase the likelihood of spikes in demand in the future, leading to ‘bottlenecks’ in service delivery pathways if commissioners are unprepared. The APPHG audit found that hospitals had widely differing, often-informal policies concerning who could receive treatment. 10 hospitals refused NICE approved treatment to all injecting drug users, 55 hospitals offered it to some patients but with varying criteria, and 2 hospitals refused treatment to anyone continuing to drink alcohol. The Windmill Practice in Nottingham has successfully treated people who are currently injecting drug users through adapting the care pathway to allow hepatitis C treatment to be delivered within a primary care drug treatment clinic setting. 62% (33 of 53 patients) of people treated in this community-based clinic achieved a

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sustained virological response (SVR), with many reporting that they would not have accessed hepatitis C treatment anywhere else. For a long time the assumption has been that such patientsâ&#x20AC;&#x2122; lifestyles are too chaotic to allow them to adhere to treatment. This powerful model shows how the right care and support can facilitate people who are still injecting to successfully complete treatment. A role for Clinical Networks? The All Party Parliamentary Hepatology Group and the Hepatitis C Trust have recommended that NHS England pilots the establishment of liver networks as part of their supported Strategic Clinical Networks programme to drive improvements in the structuring of services across the country, but liver disease is not currently one of the disease areas for the Strategic Clinical Networks that are being developed. Clinical Networks can ensure people with hepatitis C receive â&#x20AC;&#x2DC;joined upâ&#x20AC;&#x2122; care from multiple providers. Informal hepatitis networks do exist. In Yorkshire and the Humber, for example, a new network, combining Regional Hepatitis B and C Steering Group and the West and East Yorkshire Hepatology Network has emerged as the Yorkshire and Humber Liver Network. The Network consists of public health specialists (from both the local authority and Public Health England), commissioners, consultants and nurses, drug and alcohol services as well as other agencies with relevant expertise and service users. The Network aims to introduce a strategy to reduce the burden of liver disease through providing a multidisciplinary network to advise on the key themes of:

+ Awareness raising for professionals and the public

+ Training and education for professionals 54

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+ Prevention + +

strategies for individuals at risk Early detection in high risk groups Timely provision of accessible treatments in line with national and local guidance.

Hepatitis C in Prisons There is an exceptionally high hepatitis C prevalence in prisons. A study in 1997 showed a prevalence of 7% amongst prisoners in England. However, according to recorded national data, only 6% of new receptions to prisons were tested for the virus in 2011. The Hepatitis C Trust recently convened an expert panel of offender health specialists to make recommendations to NHS England, now responsible for commissioning healthcare within detention settings and has also recently launched a free prison helpline to provide much needed information and emotional support. Public Health England is now considering making opt-out testing for hepatitis C a normal part of the prisoner induction process. Expanding testing In December 2012 the National Institute for Health and Care Excellence (NICE) issued guidance on ways to promote and offer testing for hepatitis B and C. The guidance covers recommendations for actions and improvements by local authorities, GPs, midwives, obstetricians, prison staff, drugs services and sexual health services. As part of their public health responsibilities, local authorities must lead initiatives to test and diagnose people with hepatitis C in high-risk communities, such as current or former injecting drug users, baby boomers, migrant communities from high prevalence countries, and the homeless The report recommends that commissioners should include hepatitis C testing (with consent) whenever bloods are tested for hepatitis B or HIV and that

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Spring 2014

Prevention The report suggests that the most immediate impact in reducing rates of hepatitis C transmission in England can be made by increasing public awareness alongside treating people with hepatitis C who currently inject drugs. The concept of ‘treatment as prevention,’ one that has gained currency in HIV in the past few years is well understood in the field of hepatitis C. Modeling suggested that even modest rates of hepatitis treatment among current injectors could dramatically reduce hepatitis C prevalence among this group. Conclusions The report highlights that hepatitis C is both preventable and curable but that national leadership alongside coordinated local action could diagnose and treat most people living with hepatitis C and make a huge inroad to reverse rising death rates and prevent thousands of new infections. The full report can be read online at www.hepctrust.org.uk

www.baseline-hep.co.uk

www.staffordshirebuddies.co.uk

hepatitis C testing should also be included as a routine opt-out test for pregnant women when they are offered testing for hepatitis B and HIV. It also suggests that testing should be made easily accessible and offered in community settings without the need to go to the hospital for a full blood test. Dried blood spot or oral fluid testing has been increasingly used for hepatitis C testing in recent years. The number of people tested in England using these two methods increased year on year between 2007 and 2010, from 4,433 to 8,519 per annum (although these alternative methods have been used mainly by specialist drug services).

• Information, Advice & Guidance • HIV & Sexual Health Information • Outreach Services • One to One Support • Support Groups • Volunteering Opportunities • Hate Crime Reporting • Same Sex Domestic Violence Advice • Signposting & Referrals • Training & Consultancy • Youth Services • Condoms & Lube Registered Charity No: 1047375

Tel: 01543 411413 Email: info@staffordshirebuddies.co.uk

Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds. Our support service includes: 121 emotional support, advice, information and advocacy on a number of issues including HIV medication, housing, benefits. We also offer practical support and befriending on discharge from hospital. We provide a number of support groups, drop-in sessions and workshops to help improve your well being and support you to develop coping strategies. We offer complementary therapies City centre venue. Confidential and welcoming environment. Please contact us for further information: Tel: 0113 2449767 Email: leedsskyline@theBHA.org.uk Web: www.leedsskyline.org.uk

Myline:

Andria Efthimiou Mordaunt

If Not Treatment Now; When? Many years ago, sitting with Matt Dolan, author of the Hep C Handbook, we talked about hep C (HCV) statistics on our lives: of ex- and current Injection Drug Users (IDUs) - current ones at that point officially counting in at 250,000. I was acutely concerned with the numbers of us that were likely to die of HCV - 12,500 - based on very rough guestimates, and thinking, shouldn’t we have our own London Lighthouse? That was at least 10 years ago. Fast forward to 2013. The official statistics are saying there are at least 306,000 ‘problem drugs users’ in the UK and 215,000 people living with hepatitis C, most of who were or are injection drugs users. Again, even at very rough guestimates, the likelihood of around 15,000 dying of hep C is not an exaggerated nightmare... We have problems with getting hep C on the national agenda still, the key one of course, being that most of us living with it, belong to a highly stigmatised community. Getting treatment if you are currently injecting and/or even drinking alcohol, is remote. There are doctors who will give you a chance but by and large they are few. So even if you are brave enough to go and get treatment, you could get a knock back from 56

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a doctor who sees it his/her duty to only treat people whose prognosis is possibly greater. The thinking is: strapped health budgets therefore give time and medicines to those who deserve or will use them wisely... Meanwhile, injectors are out there getting sicker and possibly infecting others OR (more likely) picking up endless other infections as their immune systems are broken by the virus. I know a good handful of people who do not even trust the interferon/ribavirin combination anyway, though most people do seem to eradicate the virus for the most part whilst taking it: problem is that combo also seems to eradicate many of your white blood cells leaving you anaemic, breathless and exhausted. So there is a lot of baggage that goes with living with hep C... But there are many new drugs on the horizon now; some of which do not have the same level of side effects and which could, should shine brighter lights on our communities. However, we are still looking at several thousands of deaths over the next few years and I think it is way past time we kicked up a fuss, as our gay male peers did before us when it was HIV that was killing them in large numbers... At the very least,

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Spring 2014

a buddying system would be a first step to ensure that people living alone with acute and chronic illness were not forgotten. Living alone can be deeply demotivating when health issues crop up: how many of us put off what we can do today, ‘til tomorrow? The thing is, can we really afford to any more? So let me just give you a few facts according to the PubMed Health: For people with genotype 1, triple therapy appears to work better than dual therapy. In people with genotype 1 who complete triple therapy, the hepatitis C virus is cleared from their blood around 60 to 75 percent of the time. In people with genotype 1 who complete dual therapy, the hepatitis C virus is cleared from their blood around 40 to 50 percent of the time. In people with genotype 2 or 3 who complete dual therapy, the hepatitis C virus is cleared from their blood around 60 to 80 percent of the time (depending on how long their treatment lasted). www.baseline-hep.co.uk

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So the evidence base is somewhat encouraging, no? But hey for those of you who are still unhappy to take drugs that can have serious side effects, there are herbs. I took milk thistle for years; the virus disappeared from everywhere aside from my liver. I was lucky and this doesn’t happen every time but I still send milk thistle to one of my hep C positive friends in Kathmandu, and in the absence of money for treatment.,I also recently discovered “Antrodia camphorata” said to be hepatoprotective, particularly for those living with cirrhosis Yes, this is a pro-treatment article! If not now, when?

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What is natural spiritual healing? Natural Spiritual Healing and Progressive Counselling/Coaching The word ‘Spiritual’ originates from the Latin ‘spiritus’ which means ‘breath of life’ and is a ‘divine science and art of balance’ Natural spiritual healing is a holistic treatment that has been practiced for over 4,000 years. Healing can be defined as regaining balance of mind and body or emotions. It helps a person to find their true ‘selves’ and give some much-needed time out to nurture and give someone what they need to top up and maintain their equilibrium. A Little Background on Tania Back in 2000-2003 I trained in Swedish massage and reflexology. After a few years I went to see a ‘healer’ out of curiosity. It was an awakening and as if someone had filled my gas tank up again and I was full of deep peace and stillness. I felt reassured and comforted. All my cares and worries disappeared and I felt this loving energy envelop me throughout the treatment. I hadn’t experienced anything like that with any other therapies and subsequently I went to see Emma the Healer on a weekly basis for about six months. I discovered that even when I was seemingly well, regular healings helped ‘top me up’ and keep me focused, balanced, energised yet calmer inside. It is also wonderful for stimulating and boosting the immune system to help a person’s own 58

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healing capacity help itself.

‘Healing may comfort the whole you and restore inner strengths to cope better with life situations.’ I found it to be so inspiring I went on to train in natural spiritual healing from 2005 to 2008. I also have a daily ‘pure meditation’ practice (see my website for further details). Healing found me and it is now my hearts’ vocation and joy along with Progressive Counselling/Coaching which is another powerful holistic therapy. How May Healing Help? Healing and Progressive Counselling may help with boosting and balancing your energy. It may bring more peace to anxieties, fears, habits, relationship difficulties, illnesses and health conditions and recovery from alcohol and/or drugs. It can help you support yourself by strengthening your inner reserves to cope better with day-to-day life and any challenges you have. Healing is completely safe and alongside a holistic approach to diet and lifestyle will help bring much more fulfilment and harmony to your inner being and daily activities. The testimonials on my website can give you an insight but ultimately Healing is a unique experience; everyone is different and what

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Spring 2014

Tania Worner

one person experiences may be different to another. What Are The Benefits of Healing?

+ Renewed freshness of outlook + Connection with the best choices + + + +

for yourself in life Feeling less burdened and more positive Physical and mental relaxation Sleeping better Peace, balance, harmony

What happens during a Healing session? Natural Healing is a bespoke therapy that addresses an individual’s needs. It is a non-invasive treatment where the patient lies on a couch, fully clothed and covered in a light blanket. Healing may comfort the whole you and restore inner strengths to cope better with life situations. It may release/dissolve negativity and bring more peace and harmony to your whole self. Progressive Counselling/Coaching Progressive Counselling is a powerful holistic therapy which empowers an individual to take a healthy charge of their own life. It is a soulful, respectful approach to an individual’s current situation using Positive Mindfulness techniques. One www.baseline-hiv.co.uk

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example may be Affirmations. This can be called CBT (Cognitive Behavioural Therapy) and positive mind power or thinking. We all have choice and free will and the ability to tap into our inner most guidance and wisdom. Its intention and motivation is to help a person see more clearly any choices they need to make. It may also help unravel knots in the mind or emotions and help someone understand themselves and others at a greater depth. It may help a person to make their own individual choices as to the next step and thereby CREATE THEIR FUTURE. There is therefore a deep healing process inherent in Progressive Counselling. Above all Progressive Counselling takes place in unconditional love and there are no limits to its potential benefits. I currently work from the Helios Centre near Euston/ Kings Cross and from other locations in Westminster and Surrey mentioned on my Website Gallery Page. I am also able to visit people in hospitals where possible but mostly work out of clinics at present. My training is at the Self Realization Meditation Healing Centre/ College based in Somerset UK. selfrealizationmeditationcentres.org Tania Worner is a member of UK Healers healingforwell-being.vpeweb.co.uk

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Congratulates

as intment her appo espie on ust ill Tr G s in ry g a ig m H Dr. Rose Terrence cutive at Chief Exe

THTâ&#x20AC;&#x2122;S Deputy CEO Paul Ward who leaves the charity in March

Sir Nick Partridge on his three-decade term as CEO at Terrence Higgins Trust (THT)

on starting her Lynda Shentall e domestic abus d an PhD on HIV

Deborah Jack on her dep arture as Chief Executive at Nat ional AIDS Trust

Confidential Support & Advice Barnsley’s 1st local support group, supporting people living with HIV in our Borough

Confidential Support & Advice

For further information contact

Barnsley’s 1st local support KPS Trebullom is a Respite and Retreat B&B for people affected by HIV set in the Cornish group, supportingcountryside. people Our recent award from the Big Lottery enables us to offer living with HIV in KPSFund Enabling Futures Project Adult Personal Development Breaks our Borough3 nights/4 days full board accommodation. For positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

For further information contact

me positive about change

www.plusme.org Email: info@plusme.org Tel: 01226 320148 Registered Charity 1129248 Company by Guarantee 06772710

HIV+ clients who are thinking about returning to work, retraining or volunteering, who would like to know how the changes to the benefits system will affect them, and who would gain from attending workshops to help them move forward. Workshops on: Changes to the benefits system – what to expect Disclosing status – how best to do it The Equality Act 2010 – understand your rights Moving towards voluntary work or employment Plus a therapy, craft workshop and trip All fully funded Summer Camps For children aged 5 – 15 and one parent/guardian. Fully funded weekend activity breaks

T: 01566 86378 E: sjarvis@ kpsdirect.com www.kpsdirect.com

i-base Questions and Aswers... Can I access PrEP in the UK?

Hi, I’m a gay man living in London. I am HIV negative but I am worried about catching HIV. I usually use condoms, but not always. What is the drug that stops you catching HIV and how can I get this? What are the risks and disadvantages? Answer: Rebecca McDowall The drug you have heard of is called Truvada. This is a pill that contains two HIV drugs – tenofovir and FTC. Both these drugs are widely used as HIV treatment. Several studies have shown that if it is taken every day, Truvada can reduce the risk of sexual transmission to people who are HIV negative. Using HIV meds in this way is called PrEP, which stands for preexposure prophylaxis. Truvada has not been approved in Europe for use as PrEP. It is, however, available as a part of a clinical trial called the PROUD study. This study offers gay men in the UK one of the few chances to be able to use PrEP. So long as you take PrEP it gives a very high level of protection against HIV transmission – possibly more than 95% protection. The study is enrolling people for the next month or so, but this is only for a limited period. PrEP is likely to have the greatest protection for people who have the greatest risks. So if you already use condoms every time, this is not the study for you. But if you don’t always use condoms, or if you don’t regularly use condoms, this study could prevent your next HIV test coming back positive. There is very strong evidence that PrEP is effective. This largest study in gay men (called iPrEX) was particularly important because it enrolled gay men who had a high risk of catching HIV. This is because: They were young (half were 18-25 and most of the rest were under 40). They were sexually active (average 18 62

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partners in the previous 3 months). They frequently used alcohol (half had more than 4 drink on days they were drinking). They didn’t use condoms every time they had sex (80% had had sex without a condom in the previous 6 months). HIV was rarely discussed before sex because this was often difficult (only 2% had knowingly recently had sex with a positive partner). At least 10% of men had also had a recent sexually transmitted infection (STI). If some of these factors are relevant to your life, then this study could make a big difference to you. Although PrEP may not be for everyone, a recent survey reported that about 50% of gay men in London were interested in this as an option to prevent HIV. The iPrEX study showed that PrEP had a greater protection against HIV even that using condoms, so long as people were taking the meds. This is because even when trying to use condoms all the time, sometimes they don’t get used, or sometimes they can tear or fall off. The protection from PrEP is continuous – 24 hours a day, 7 days a week. PrEP though can only be effective if you take the pills. But the level of protection is likely to protect against different ways that HIV is transmitted. This should include being active against the lower risk from oral transmission. PrEP studies report a very close

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Spring 2014

relationship between taking PrEP and the level of protection. Just as condoms sometimes get missed, you can also forget to take a pill. Luckily the level of protection is still likely to be high so long as you take most of the pills. An occasional missed pill is likely to be fine â&#x20AC;&#x201C; and unlike when the PrEP meds are use to treat HIV, there is no risk of developing drug resistance if you are still HIV negative. It is important to remember that PrEP does not protect against other sexually transmitted infections (STIs). The study will emphasise the importance of condoms and will include other information and support to help with looking after your sexual health. Further information If you would like to talk to a community treatment advocate about PrEP, the i-Base phoneline (0808 800 6013) is open on Monday, Tuesday and Wednesday from 12.00 noon â&#x20AC;&#x201C; 4.00 pm. If you would like to speak with someone outside these hours this can be arranged by sending an email to the i-Base information service: questions@i-Base.org.uk. See also these links below to the study website and to previous i-Base reports on PrEP. PROUD study website www.proud.mrc.ac.uk List of current PROUD trial sites www.proud.mrc.ac.uk/where_are_ we_recruiting.aspx Analysis from iPrEX study modeling close to 100% protection with good adherence http://i-base.info/htb/16327 First report if iPrEX results in December 2010 http://i-base.info/htb/14191 Survey result showing half of gay men in London would be interested in using PrEP http://i-base.info/htb/16694 www.baseline-hiv.co.uk

i-base 0808 600 8013

ask a question

by email, online or phone

questions@ i-Base.org.uk www.i-Base.info/qa

0808 800 6013

take control of your treatment

Whatever you’ve done. you. Whatever life’s done to Call Samaritans. ure. press No No judgement. We’re here for you. Any time.

08457 90 90 90* www.samaritans.org

www.baseline-hiv. co.uk

A registered charity

* Please see our website for latest call charges

In partnership with

SAM_570_NetworkRailAds_Workman_v2.indd 1

Does life feel like it’s getting on top of you? Could you benefit from a space to take some time-out... to explore your thoughts and feelings? I am a qualified counsellor based in Finchley, North London. I am committed to providing counselling, group therapy and training in a safe, confidential and non-judgemental environment. For more information please contact Joel on 07787 226 376 or email kornjoel@hotmail.com

www.2-life.co.uk 2-Life is the trading name of all services offered by Joel Korn: Counselling, Group Therapy and Training.

15/02/2013 11:01:53

Are you HIV positive with an HIV negative partner or HIV negative with an HIV positive partner? Join the Partner study to help researchers learn more about the risk of HIV transmission to HIV negative people when their HIV positive partner is on treatment It will also explore why condoms are not used consistently in some partnerships For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at alison.rodger@ucl.ac.uk

or Simon Collins at

simon.collins@i-base.org.uk

Dear Susan My HIV clinic has advised me to tell my GP that I’m HIV positive. I’m nervous about doing this. I’m worried about confidentiality and being treated differently. You are not alone in feeling this way. Many people living with HIV have had some anxiety about disclosing to their GP. You are under no obligation to tell your GP about your HIV status unless you want to and your HIV clinic is obliged to respect your confidentiality. However it probably is a good idea to tell your GP for a number of reasons. A few years ago it was common for HIV clinics to prescribe non-HIV medications to their patients, so it wasn’t always necessary to see a GP. However in these austerity, cost-cutting days most HIV clinics are unable to prescribe other medications, so you will now usually have to see a GP if you need treatment for non-HIV medical problems. If your GP doesn’t know you have HIV and the medication you are taking, there is the potential for them to prescribe you things that interact badly with it. Many HIV medications affect the effectiveness of hormonal contraception, something for women living with HIV to think about if their GP doesn’t know they have HIV and they are on the pill! If your GP knows about your HIV status, you can benefit from services you’re entitled to, such as flu jabs and, if you’re female, annual cervical screens. Your GP may also have more expertise than your HIV doctor in treating other general health problems and long-term conditions such as diabetes or depression, as well as other issues linked to ageing. There is no reason for your GP to treat www.baseline-hiv.co.uk

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you differently or for them or anyone else in the practice to compromise your confidentiality. All staff in the practice, including receptionists are legally bound to ensure your medical information remains confidential and risk being sacked if they breach these rules. It is possible your GP may not have a great deal of experience of treating someone with HIV, but it is important they liaise with your HIV doctor. Although there is no reason for your GP to treat you differently, there have been a few cases where this has happened. This is unacceptable and you have the right not to be discriminated against, or face harassment because you have HIV. If you find you get worse treatment because your HIV status, or are made to wait longer or indeed refused treatment, this would be classified as discrimination and you are protected under the Equality Act. You can get help and advice from EASS (Equality Advice Support Service) on 0808 800 0082, or THT Direct on 0808 802 1221. You should also consider changing your GP to one who is sufficiently trained if you have any negative experiences. NAT also has information on GPs and your rights on their new site MyCareMyVoice I do have a friend who only told her GP about her HIV status last year after over 15 years of living with the virus. She anticipated ignorance and was ready armed with the Equality Act in case of any discrimination. Instead she found her GP treated a number of patients with HIV and was in fact more underwhelmed by the revelation. For the first time she felt her medical care was “joined up”, with her GP and HIV Consultant working together to ensure she had the best care. So my advice to you is bite the bullet and tell them. Good luck!

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FINELINES: ‘What I have always wanted is to be of use. I will not be abused. I will not be misused, not willingly. But I will be of use. Anybody who is not of use is useless.’ Maya Angelou

‘In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of the things not meant for you.’ Buddha

‘To love oneself is the beginning of a lifelong romance.’ Oscar Wilde

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Spring 2014

UK and Ireland

BBV HIV

UK UKAND and IRELAND Ireland

Community COMMUNITY COMMUNITY Grants 2014 GRANTS 2013 AWARD 2011

Sponsorship Sponsorshipby by Gilead Gilead Gilead isisproud proudtotoannounce announce Gilead thethe openingofof2014 2013BBV HIV(HIV, community opening HBV, HCV) grants application process. process. The community grants application grants are aimed at supporting The grants are aimed at supporting HIV patient and community groups patient and community groups or organisations. A total of up or A total of for up to to organisations. £125,000 is available core £145,000 available for corefunding. funding funding oris project specific or project specific funding.

Integrity, Teamwork, Excellence?

This Award aims to recognise a Particular attention will be given

group will has madetoa Particular attention be given to community applications thatwho promote or significant that or unique contribution to applications promote or enable enable the active involvement of people living with HIV. the active involvement of patient in patient groups or organisations Givenorinorganisations memory of Martin Jpolicy Flynn, treatment, care delivery groups in or treatment, Community Advocate 1952-2008, decisions. care delivery or policy decisions. two grants of £5000 each will be

fund the core activities of For more forfor applicants Formade moretoinformation information applicants the chosen group. including eligibility criteria and including eligibility criteria and applications forms please email applications forms please email YOUR NOMINATIONS PLEASE ukcommunity@gilead.com admin@gilead-communities.com To request a nomination form contact us at:

More details at: Applications must be received by ukcommunity@gilead.com 15th March 2013 www.gilead-communities.com

www.baseline-hiv.co.uk

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Date of Preparation: OctoberApril 20122011 Date of preparation: 001/UK/13-11/MM/1167 001/UK/12-10/CI/1108 001/UK/11-03/MM/2872a Date of preparation January 2014

Let’s talk� about me and my options “I am finding more ways to work� with my healthcare team and� live healthier with HIV”� App available at iTunes App Store

Download “My Health Matters” iPhone app to help you get the most from your healthcare team and HIV treatment Contributing to HIV care for over 25 years www.managingmyhiv.co.uk

Download code reader and scan code for further information on My Health Matters App

This app and website were developed and funded by 06-15 INFC-1086205-0000

Date of preparation: June 2013