Rare Disease Patients Get Nod in UN Declaration on Universal Health Coverage

Rare Daily Staff

The United Nations adopted a declaration during a meeting of heads of states September 23 that calls for progress towards universal health coverage and includes a call to strengthen efforts to address rare diseases.

Photo: U.N. Secretary-General António Guterres

The inclusion of rare diseases in the declaration is being embraced within the rare disease community as progress in elevating the visibility of rare diseases as a global health issue. 

“This is the first time people with rare diseases are included in the UHC declaration, which is a huge milestone for global advocacy groups,” said Lisa Foster, CEO of the New Zealand rare disease organization Rare Disorders NZ. “There are more than 300 million people living with rare diseases worldwide and UN recognition will ensure this population is not left behind.”

In a joint statement issued to the UN High Level Meeting on Universal Health Coverage September 23, Eurodis, the NGO Committee for Rare Diseases, and Rare Diseases International wrote that “the inclusion of rare diseases within UHC, taking a human rights approach, will be an opportunity to scale up these strategies and ensure that truly no one is left behind.”

The declaration commits countries to work to advance healthcare coverage for their citizens. U.N. Secretary-General António Guterres called the declaration “the most comprehensive agreement ever reached on global health.”

The broad agreement calls on countries to work on tackling communicable diseases, including HIV/AIDS, tuberculosis and malaria, as well as addressing non-communicable disease and the growing threat of antimicrobial resistance. It also calls for providing universal access to reproductive healthcare services and reproductive rights.

General Assembly President Tijjani Muhammad-Bande began the meeting on the declaration by saying that access to critical health services “must be a universal right and not a privilege.”