Support for rare disease universal health coverage sought in UN
Estimated 4% of global population have one of 6,000 rare diseases
When United Nations (UN) member states gathered recently to discuss advancing universal health coverage by 2030, a side event was also held that focused on universal coverage for people with rare disorders.
The event, titled “A Blueprint for Leaving No One Behind,” was held in New York by Rare Diseases International (RDI), EURORDIS-Rare Diseases Europe, the Federacion Espanola de Enfermedades Raras (Spain), and Agrenska (Sweden). It was organized by the Permanent Missions of Spain and Sweden to the UN, and Qatar’s Ministry of Public Health.
UN members are being asked to establish a global action framework with the adoption of a World Health Assembly Resolution on Rare Diseases by providing sufficiently funded universal health coverage for rare disease patients. The call for movement on healthcare coverage for rare conditions such as Lambert-Eaton myasthenic syndrome (LEMS) aligns with UN efforts to back human rights and sustainability worldwide.
An estimated 4% of the global population — about 300 million people — have at least one of the roughly 6,000 known rare diseases. LEMS, a rare autoimmune disorder that primarily affects lower-limb muscles, has an estimated global prevalence of 2.8 per million people.
The meeting, opened by Queen Silvia of Sweden and Queen Letizia of Spain, was attended by representatives of the governments of Spain, Canada, France, Qatar, Malaysia, France, Brazil, the United Arab Emirates, and Malaysia, along with the European Commission, a governing entity of the European Union.
Universal health coverage must include rare diseases
The presentations underscored the need for regional and national efforts to support those with rare conditions through investments in scientific research and shared expertise, and by reducing their economic burden.
People with a rare disease face healthcare costs that are three to five times higher than those of people without such a condition, according to a National Institutes of Health study. The annual cost burden to the U.S. for rare conditions is thought to be about $1 trillion.
“Patients and families living with rare diseases are heartened by the continued commitment expressed by the global organizations as well as the national governments. As a Canadian and rare disease parent, I was especially gratified by the words of Dr. Theresa Tam, chief public health officer of Canada, reinforcing the federal commitment of $1.5 billion for rare disease treatments,” Durhane Wong-Rieger, RDI chair and president, and CEO of the Canadian Organization for Rare Disorders (CORD), said in a CORD press release.
“Coupled with the lost income of family members serving as caregivers, who are disproportionately women, this creates a long-term financial burden, leading to the impoverishment of the rare disease population,” CORD stated in the release. “For society, the cost of not diagnosing and not treating rare diseases exceeds the cost of timely appropriate services.”
“The assembly heard from the representatives of patient organizations across the globe working at local and national levels, how they have been able to leverage the UN Universal Health Coverage Declaration and the UN Rare Disease Resolution to effect meaningful advances in diagnosis, care and treatment,” said Wong-Rieger, who moderated a panel of patient advocates from four continents to explore the social, financial, and medical difficulties with a rare condition. Challenges discussed included high treatment costs, limited access to healthcare services, diagnostic delays, and expenses such as rehabilitation and transportation.
The event sought to enhance the political momentum for rare disorders that’s been growing since the 2019 Political Declaration on universal health coverage and marked the first time a UN declaration adopted by all 193 member states included rare conditions. That was followed two years later by the UN’s first resolution on rare diseases.