8th of may, International Thalassaemia Day Message

8TH OF MAY MESSAGE 2014 THEME FOR THE INTERNATIONAL THALASSAEMIA DAY 2014: ‘'ECONOMIC RECESSION: OBSERVE – JOIN FORCES – SAFEGUARD HEALTH'

Dear friends, Dear collaborators,

Every year for the International Thalassaemia Day, on the 8th of May, TIF honours this day through different activities all of which aim to spread awareness and promote education around these diseases around the world in 117 member associations of TIF in 56 countries. This year’s theme is: ‘'Economic Recession: Observe – Join Forces – Safeguard Health'. This year, TIF encourages member associations and officials to focus on it with activities and actions according to their needs or priorities.

Every year on the 8th of May the global thalassaemia family honours the many thousands of patients and their families who through their work and commitment have paved the way towards a better understanding of this disease its prevention and treatment and have motivated the medical and scientific community to invest time and resources to achieve remarkable advances that we evidence today.

This theme highlights the need to support policy decisions that reduce health inequalities, with particular focus on countries affected by the global financial and economic crisis. The global financial crisis has already had wide-reaching social, economic, and political impact, with some of its most devastating consequences affecting the quality of health care.

The hard times of austerity have had an impact on countries across the world, affecting the health sector with some if not many potentially irreversible consequences. The global economic crisis as stated by the World Health Organization, has contributed to the worsening of inequalities, affecting all areas of the life of individuals, such as the professional, social, educational aspects and perhaps most importantly their health, touching even the most vulnerable groups of the population, such as those with chronic disorders. Patients need the life long support of nations, health authorities and their commitment for good quality services.

The global economic crisis poses a massive threat to the stability of the public healthcare and social systems and to the general access to healthcare services. The problem could be efficiently faced with specific measures in the scope of the various national economic stimulus programmes. Experience from earlier crises shows that expenditure on general healthcare was considerably reduced during economic downturns and that afterwards it took a relatively long time before it reached the former standard again let alone in addition achieve any progress. Those who allow the crisis to reduce the standard of healthcare should recognise that they are causing a long-term problem with potentially catastrophic consequences not only for existing patients with chronic disorders, but for all the people, with anyone at any time being a potential patient.

It is important to mention that the health budget in many countries of the world has considerably decreased and in most cases, such reductions were salaries’, benefits’, and hospital operating costs’ related. Some countries even enter or have already entered the group of economically disadvantaged and effects on health are truly frightening.

In the past five years, the national, regional, and international community of patient organizations have been confronted with these unprecedented consequences of the financial crisis.

In the face of this world crisis, National, European, Regional, and International Patient Organizations, such as Thalassaemia International Federation, have an obligation to act in a proactive and protective way and work constructively with relevant stakeholders safeguarding the rights of patients. The work of organisations for patients with chronic diseases such as thalassaemia, with enormous medical, social, economic and certainly public health repercussions becomes all the more important and challenging during such times.

Their role becomes pivotal in the redirecting and/or strengthening their collaboration and networking with official health related bodies and agencies targeting their efforts at the country regional and international level to prevent any decline in the range of services and deterioration in the quality of health care systems provided to patients, especially those with chronic diseases.

Health system reforms are essential in such difficult times to achieve fiscal consolidation and increase efficiency. But change should be based on the overarching values of universality, access to good quality care, equality, and solidarity – based on the fundamental human rights of all for access to appropriate and quality health. Care-reform should be coherent with national strategies against poverty and social exclusion and evidence-based. Investing in a balanced way in the treatment of diseases as well as the prevention is value for money and contributes to a healthy and productive working population.

Crises could be a catalyst rather than a hindrance for long due reforms in money inefficient health systems and any structured reforms to health systems should not compromise patient safety and access to quality care.

Dear friends, under such economic global austerities, more prominent in some regions than others, it is our responsibility and duty as patient organisations, while continuing the fight for promoting improvements for the management and prevention of haemoglobin disorders, to offer as strong support as possible and upgrade our role towards working closer and more productively with national and international health related bodies to prevent deterioration and establish those measures that would put on hold any damage and downgrading of the quality of healthcare systems in the sacrifice of the economic austerity.

It is important to underline that a poor state or a poor country is not the one that does not have financial strength, but one that lacks compassion, vision and appropriate and long-term planning for having healthy citizens.

Thalassaemia and other haemoglobin disorders as a result of numerous medical and scientific advances in the last 3-4 decades have been transformed from fatal childhood diseases to chronic ones with excellent survival and quality of life prospects for patients. Let us join hands all over the world and let us make sure that we do not allow any drawbacks to happen cancelling the huge successes achieved in the past. Let us not sink the patients and their families back into the darkness, fear, misery, sickness, uncertainty, and poor health, that many of us who are older, lived and experienced in the 1960’s, and the 1970’s. The medical community today has in its hands very powerful tools to effectively prevent and treat these disorders and the economic crisis and/or poverty should not constitute excuses or reasons for allowing patients to live in a marginalised society deprived of their right to dream, hope, and plan for the future.

Thalassaemia International Federation calls the global thalassaemia family, all the patients’ associations, members and non-members, the global health-professional community, national and international health authorities and organizations, to unite their voices and join their hands to safeguard patients against any adverse changes in the course of the health care reforms which most countries are currently going through across the world. As Ghandi put it “A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.”

Let us get the world to know of our work, our mission, and vision towards a better world where effective prevention and treatment are national priorities and where patients have equal rights for access to quality health care.

TIF will provide you with a proposed campaign kit containing patient-oriented information. The kit will also include a video message from the President of TIF, a logo, a banner, a poster, and other documents to facilitate activities in each country.

Yours sincerely, Panos Englezos

TIF President

Androulla Eleftheriou

Executive Director