Rare Diseases and Universal Health Coverage : a mutually reinforcing agenda

Rare Disease Day 2019,a day to raise awareness amongst the general public on rare diseases and encourage researchers and decision makers to address the needs of patients with rare diseases was this year marked with a lot of activity.

One notable activity was the NGO Committee for Rare Disease Calling for a United Nations resolution (a formal expression of the opinion and will) and integration of Rare Disease into the Universal Health Coverage (UHC) agenda. This was through the second high-level policy event at the United Nations on 21st February 2019. Here, the committee called on the UN to adopt a resolution that will formally make rare diseases a global priority.

The proposition is that a Resolution on rare diseases will set in motion a wave of policy actions globally that will ultimately improve the lives of over 300 million people affected by rare diseases. In turn, this will contribute to the achievement of Universal Health Coverage which WHO defines as a state where all people and communities can access and use health services that promote, prevent, cure, rehabilitate and offer palliative health services as prompted by health needs and are of sufficient quality to be effective. This, while also ensuring that the use of health services does not expose users to financial hardships.

The committee hence argues that global rare diseases and UHC share fundamental principles and so UHC shall never be fully achieved if individuals affected by rare disease are left out.

The result of the UN adopting a Resolution on Rare Diseases would be a change in the present narrative where rare disease are often neglected due to lack of medical knowledge barring them from receiving the same level of attention and support compared to other diseases. 

IAPO’s Declaration on Patient-Centred Healthcare outlines that, despite representing patients from many different disease backgrounds, our focus remains on addressing the common needs of all patient communities, regardless of their disease area. As rare diseases affects many different patient populations, the subject is highly relevant to IAPO’s core value of patient-centred healthcare.

We recognise patients with rare diseases and disorders as a high priority group as patients and their cares face severe health inequities with limited access to timely, clinically appropriate, safe, quality and patient-centric healthcare and social welfare support.