“That’s not fair!” seems to be the universal battle cry of childhood. Where does it come from, the innate desire for justice and fairness that children possess? At what point do we relinquish our ideals and accept that, life, indeed, is not very fair? How many of us have been guilty of informing a child, “That’s too bad. Life isn’t fair!”?
The theme of this year’s International Rare Disease Day, initiated by Eurordis in 2008, asks that we reach inside ourselves and retrieve that lost idealism of childhood – with its imperative that life be fair, that equality should prevail, and we should all be awarded equal – if not identical – portions of life’s pie. Specifically, today, 28 February, stakeholders are asked to contemplate, and if possible to take some small measure toward correcting, the gaps in healthcare that exist - not only between countries but between illnesses.
Let it begin with us…
The various inequalities that exist between the world’s countries are so devastatingly enormous that it is easy to give up before we’ve even contemplated doing something about it. But a house is built slowly - brick by brick – and, likewise, change toward equality occurs action by action. The priorities of the European Union Committee of Experts on Rare Diseases (EUCERD) directly revolve around reducing inequalities for rare disease stakeholders – not only the patients and their families – but also for the health professionals, researchers, and policymakers who often find themselves with their hands tied, unable to provide help or resources. A sturdy foundation for change has already been laid with the adoption of a Council Recommendation on an Action in the Field of Rare Diseases, which calls on each European Union Member State to elaborate and adopt a rare disease strategy by the end of 2013.
Just what are we dealing with?
In order to alleviate inequalities in healthcare systems, it is first necessary to have solid data on existing rare disorders in the communities. A country cannot make rare diseases a priority if it has never been able to assess the number and nature of the conditions within its jurisdiction. The EUCERD is dedicated to the implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant European authorities in the fields of research and public health action and other relevant stakeholders acting in the field. Current priorities are geared toward improving knowledge – what diseases are out there? What is the nature of these diseases? What resources already exist? These questions can be answered by improving the traceability of rare diseases via an updated International Classification of Diseases, for example, that assigns a code to each rare disease and can be cross-referenced with other classification systems. Other efforts include identifying existing documentable indicators for rare diseases and cataloguing the incentives and initiatives underway at the local or national level for rare disease patients. These actions contribute toward the reduction of inequality by capturing the existing state-of-play in the field and identifying gaps.
Inequalities in health
Having a rare disease should not automatically translate into a sentence for living a diminished life. This year’s International Rare Disease Day theme draws attention to the inequalities rare disease patients suffer due to the very nature of their illnesses. Rarity makes knowledge hard to obtain; rarity renders research fragmented or unpursued; rarity leaves treatments undeveloped. Perhaps worse, by driving prices impossibly high, rarity causes developed treatments to remain inaccessible to many. Yann Le Cam, leader of the patient-driven European Organisation for Rare Diseases qualifies the field of rare diseases as “…one of the most dramatic cases of health inequalities today both internationally and in particular in Europe”.
The EUCERD fully endorses the International Rare Disease Day campaign to raise awareness for the health inequities in the field – and particularly supports the promotion of rare diseases in the Third EU Public Health Programme (2014 to 2020) - and will continue working hard to level the playing field for all the rare disease stakeholders out there.