Universal Health Coverage (UHC) ensures all people, everywhere, can access quality health services with financial protection and are not pushed into poverty by healthcare costs.
To be truly universal, UHC policies must be inclusive of Persons Living with a Rare Disease (PLWRD) and seek to strengthen health systems to address the specific challenges associated with infrequent diseases, such as delayed diagnosis, inadequate clinical management and limited access to treatment.
All UN Member States have agreed to work to achieve Universal Health Coverage by 2030 as part of the Sustainable Development Goals.
In 2019, countries adopted the UN Political Declaration on UHC. As a result of consistent and coordinated advocacy from the rare disease community in the years leading up to the adoption of the Declaration, the final text includes rare diseases and commits all governments to strengthen efforts to address rare diseases in their plans to achieve UHC.
WHO’s top priority is to support countries on the path towards universal health coverage. This includes access to diagnosis and treatment for people who suffer from rare diseases.
Dr Tedros Adhanom Ghebreyesus, Rare Disease Day Statement, February 2018.
The UN Resolution on Persons Living with a Rare Disease and their Families, adopted by consensus by all UN Member States, calls on countries to strengthen health systems to provide universal access to a wide range of healthcare services without financial hardship.
Moreover, the World Health Organization’s 13th General Programme of Work 2019-2023 (GPW13) includes strengthening health systems by fostering collaboration, aggregating expertise, and delivering a patient-centred approach to multidisciplinary care as concrete steps toward UHC.
TOWARD UHC FOR RARE DISEASES
- Under the RDI’s Memorandum of Understanding with the WHO, initiatives led by the global rare disease community to ensure health systems include: developing a common Operational Description of Rare Diseases and creating a Global Network for Rare Diseases.
RDI is a member of the Civil Society Engagement Mechanism of UHC2030, an initiative established by the World Bank and the World Health Organization to advance equitable UHC policies and actions.
RDI also develops tools and resources to enable civil society groups and the public to advocate for national and international UHC policies that address rare diseases.
Formal Side EVENT TO un high-level meeting on UHC 2023
RDI’s formal side event at the UN Headquarters brought together several high-level speakers, including 5 Ministers of Health, 3 representatives of State, along with representatives of international agencies and patient advocacy groups, demonstrating the political momentum behind the movement to ensure that PLWRD are not left behind in Universal Health Coverage.
UHC DAY 2022
RDI’s UHC Day 2022 event focused on Universal Health Coverage (UHC) for rare diseases. Expert panelists developed recommendations and next steps towards making “Health for All” a reality for the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide.
Key Resources
- Meeting Report – Formal Side-Event to the UN High-Level Meeting on Universal Health Coverage
- Meeting Report – UHC Day 2022 Policy Event, Universal Health Coverage (UHC) for Rare Diseases
- RDI UHC Day Statement on Health Equity, 13 December 2021
- UHC2030 CSEM Health for All Advocacy Toolkit, 2021
- Position paper ‘Rare Diseases: Leaving No One Behind in Universal Health Coverage’, April 2019
- Call for the integration of rare diseases into the UN Political Declaration on UHC launched at the Second High-Level Event of the NGO Committee for Rare Diseases, 21 February 2019, at the UN NYC. More information on the event.
- Written statement at the UN High-Level Meeting on UHC on 23 September 2019.
- UN Political Declaration on UHC, September 2019
- Rare diseases are mentioned in the first edition of UHC2030’s ‘State of Commitment to UHC‘ Report