UN members asked to back rare disease universal health coverage

Adoption of World Health Assembly Resolution on Rare Diseases sought

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by Mary Chapman |

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Global rare disease organizations emphasized the importance of universal health coverage (UHC) for people with rare diseases during a side event to a meeting of United Nations (UN) member states to accelerate progress toward the goal of univeral coverage by 2030.

The event, titled “A Blueprint for Leaving No One Behind,” was held in New York by Rare Diseases International (RDI), EURORDIS – Rare Diseases Europe, Agrenska (Sweden), and the Federacion Espanola de Enfermedades Raras (Spain). It was organized by the Permanent Missions of Spain and Sweden to the UN, along with Qatar’s Ministry of Public Health.

UN members are being asked to mobilize efforts to provide a global action framework through the adoption of a World Health Assembly Resolution on Rare Diseases to improve patients’ lives by providing adequately funded universal health coverage.

The emphasis on the need for global action on healthcare coverage for the rare diseases such as aromatic l-amino acid decarboxylase (AADC) deficiency is part of efforts by the UN to support global human rights and sustainability.

An estimated 300 million people — 4% of the world’s population — live with at least one of the approximately 6,000 known rare disorders.

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The meeting, opened by Queen Letizia of Spain and Queen Silvia of Sweden, was attended by representatives of the governments of Canada, Spain, Sweden, Qatar, France, Malaysia, Brazil, and the United Arab Emirates, along with the European Commission, a governing body that’s part of the European Union.

Presentations emphasized the need for action on regional and national levels to support people with rare conditions through shared expertise, investments in scientific studies, and by mitigating the economic burden of rare diseases.

A National Institutes of Health study found that healthcare costs for people with a rare condition are three to five times greater than the costs for those without such a disorder. In the U.S., the cost burden to the nation for rare conditions is estimated at about $1 trillion annually.

“Patients and families living with rare diseases are heartened by the continued commitment expressed by the global organizations as well as the national governments,” Durhane Wong-Rieger, RDI chair and president, and CEO of the Canadian Organization for Rare Disorders (CORD), said in a CORD press release. “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.”

“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 World Health Organization, the World Bank, the Office of the UN High Commissioner for Human Rights, and the NGO Committee for Rare Diseases also proclaimed their support for the rare disease community.

“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. In Canada, we have been overwhelmed by the substantive support from our healthcare providers, patient groups and private partners and look forward to our continued collaboration,” said Wong-Rieger, who moderated a panel of patient advocates from four continents to discuss the medical, social, and financial challenges of living with a rare disease. Issues such as diagnostic delays, limited access to healthcare services, the high cost of therapies, and expenses such as for transportation and rehabilitation were covered.

The participation for the event expands the political momentum for rare diseases that’s been increasing since the 2019 Political Declaration on universal health coverage. It marked the first time a UN declaration adopted by all 193 member states included rare disorders. The UN made its first resolution on rare diseases two years later.