Advocacy: rare diseases mentioned within the framework of Universal Health Coverage at UN
Universal health coverage relates to the implementation of the idea that all people and communities should have the ability to use the best-quality promotive, preventive, curative, rehabilitative and palliative health services that meet their needs. Moreover, it encompasses the fact that the use of these services should not expose the user to financial hardship.
Specifically, universal health coverage embodies three key goals according to the World Health Organisation:
- “Equity in access to health services - everyone who needs services should get them, not only those who can pay for them;
- The quality of health services should be good enough to improve the health of those receiving services;
- People should be protected against financial-risk, ensuring that the cost of using services does not put people at risk of financial harm.”
These considerations are particularly important for rare diseases. Indeed, rare disease patients suffer from the lack of services to meet their needs and their significant economic cost. As a matter of fact, the recent annual report of the United Nations Office of the High Commissioner for Human Rights examines the way in which the human rights framework can support the conceptualisation and implementation of the universal health coverage. Within this report and its recommendations is made reference to persons living with a rare disease which is a huge step forward for the rare disease community. It seems that the advocacy efforts of all the stakeholders in the field of rare diseases are yielding promising results. Indeed, organisations like EURORDIS-Rare Diseases Europe, the NGO Committee for Rare Diseases or Rare Disease International have been working to establish links with the United Nations Office of the High Commissioner for Human Rights since 2017. They have organised a number of events, face to face meetings and participated to the Office’s consultation on health and the Sustainable Development Goals from the Human Rights Approach, which facilitated the current developments.
Hence, we can only rejoice with such news and hope for a continuation of this awareness of rare disease at the international level.