In September 2019, Member States of the United Nations, including South Africa, signed the most comprehensive and ambitious declaration on health in history :The UN Political Declaration on Universal Health Coverage (UHC).
It recognises that UHC is essential to achieve global equity and ensure we ‘leave no one behind’. It also emphasises the need to give special attention to the vulnerable and marginalised segments of the population, including the need to strengthen efforts to address rare diseases (Article 34).
UHC will not be truly universal unless the needs of persons living with a rare disease are addressed.
But what is Universal Health Care and what does it aim to achieve?
Universal health coverage (UHC) ensures all people, everywhere, can access the quality essential health services they need without being exposed to financial hardship.
In essence, Member States need to consider three dimensions of coverage when moving toward universal health coverage: in terms of population, in terms of services and in terms of proportion of costs covered.
‘Reaching the furthest behind first’ is recognised as a good strategy to start the process towards UHC. And while countries around the world are at different stages in the development of policies in support of the rare disease community, any country can today take decisive action to support a greater integration of rare diseases in its UHC model or approach. It is possible to make great progress at a rapid pace even if starting from very little.
The true benchmark of how inclusive a society can pretend to be is how it addresses the health of its most vulnerable.
We urge our Policy makers to support the rare disease community in South Africa by gradually taking a number of actions in each of the three dimensions of UHC.
Policy makers should :
• Raise awareness and enhance visibility of rare diseases in all sectors including health, social, work, education and research.
• Support the identification of rare diseases, and their better classification and codification.
• Improve access to accurate and timely diagnosis of rare diseases.
Policy makers should :
• Facilitate access to high quality healthcare and treatments for rare diseases.
• Create policies for the identification, accreditation and support of experts and expert centres on rare diseases as well as their national and international networking.
• Identify and establish social services relevant to rare diseases and bridge the gap between health and social services.
• Promote research on rare diseases to increase the availability of services and treatments for this population.
Policy makers should :
• Guarantee access to affordable treatments :
orphan medicinal products, new medicines and health technologies for rare diseases.
• Ensure people living with a rare disease and disability receive the level of support they need.
• Ensure a good work-life balance and protection from loss of income for family members who are caregivers.
“As a country, we have to do better for our vulnerable healthcare communities” - Kelly du Plessis, Founder and CEO of Rare Diseases South Africa (RDSA)