Key milestone: Political declaration issued by the UN on universal health coverage includes rare diseases for the first time
Source: United Nations website
On the 23 September, following this summer’s United Nations Office of the High Commissioner for Human Rights’ annual report focusing on universal health coverage and making reference to rare diseases, the UN member states agreed to adopt a political declaration on universal health coverage also mentioning rare diseases within the framework of universal health coverage. This can be seen as a historical step on the path of advocacy for rare diseases towards their recognition as a global health priority, as it is the first time that rare diseases are included within a UN declaration adopted by all 193 Member States.
EURORDIS-Rare Diseases Europe, RDI and the NGO Committee for Rare Diseases wrote a joint statement celebrating this milestone event. They reasserted the challenge rare diseases represent for our societies and how fighting against it is aligned with the universal health coverage principles. They also described how being included in the declaration is an opportunity to scale up the strategies put in place by the rare disease community at the global level.
Durhane Wong-Rieger, Chair of the Council of RDI, President of the Canadian Organization for Rare Disorders and Member of the Board of the NGO Committee for Rare Diseases stated that, “The inclusion of people living with a rare disease within the declaration is the result of years of coordinated advocacy work from a number of organisations and led by Rare Diseases International, EURORDIS and the NGO Committee for Rare Diseases. The rare disease community remains committed to driving support for universal health coverage, to collaborating with relevant actors, to holding governments to account and to ensuring that traditionally left-behind communities like ours are actively engaged to plan, budget and implement the policies that will ensure services are more acceptable, appropriate and sustainable”.
Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, member of the Council of Rare Diseases International (RDI) and member of the Executive Committee of the NGO Committee for Rare Diseases, also affirmed that “This is the most important health-related text in the 15 years of the 2030 Agenda for Sustainable Development. It reinforces and creates a dynamic in almost all countries in the world to increase the percentage of the population (including people with rare diseases) benefitting from health coverage, enlarges the list of care services covered, and increases the percentage of healthcare expenses covered by public resources. The declaration gives us the most robust grounds to date to move towards a UN resolution on rare diseases”.
Finally, Anders Olauson, Chair of the NGO Committee and Chairman of the Ågrenska National Centre for Rare Diseases (Sweden), declared that “This declaration represents a double milestone for the rare disease community. At a political level, the inclusion of rare diseases alongside communicable and non-communicable diseases, impairments and disabilities, means people living with rare diseases are no longer invisible to the international health policy agenda. At a practical level, the text also provides leverage for local stakeholders to call for national action to provide health services for people affected by a rare disease”.