Canadian Organization for Rare Disorders supports call on United Nations member states to turn universal health coverage into a reality for people living with rare diseases
NEW YORK, Sept. 21, 2023 /CNW/ - At a high-level meeting at the United Nations Headquarters today, UN member states gathered to accelerate progress towards achieving universal health coverage by 2030. In conjunction with this momentous occasion, Rare Diseases International (RDI), EURORDIS – Rare Diseases Europe, Ågrenska and Federación Española de Enfermedades Raras (FEDER) held a formal side-event to emphasize the vital importance of including the rare disease community in UHC.
The event, entitled "A Blueprint for Leaving No One Behind," was co-organized by the Permanent Missions of Spain and Sweden to the UN and the Ministry of Public Health of the State of Qatar to underline the message that universal health coverage cannot be truly universal unless it meets the needs of the 300 million people worldwide living with a rare disease.
Dr. Theresa Tam, Canada's Chief Public Health Officer, represented the government of Canada at the meeting, which was formally opened by Queen Letizia of Spain and Queen Silvia of Sweden, followed by addresses from the ministers of health of Sweden, Qatar, France and Malaysia, as well as representatives from the ministries of health of Canada and Brazil, the ministry of foreign affairs of the United Arab Emirates, and the European Commission, emphasizing the need for global action on supporting people living with rare diseases through sharing expertise, investing in scientific research and relieving the economic burden of rare diseases.
The World Health Organization, the World Bank, the Office of the UN High Commissioner for Human Rights, the NGO Committee for Rare Diseases, Ågrenska, and the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO) highlighted the need for supporting the rare disease community as part of their objectives of supporting global human rights and sustainability.
The high-level, global participation in this event reflects the political momentum for rare diseases that has been growing since the 2019 Political Declaration on universal health coverage, which marked the first time that rare diseases were included in a UN declaration adopted by all 193 member states. This was followed by the first-ever UN resolution on rare diseases in 2021. Today's meetings provide further evidence that the UN member states are collectively committed to supporting the rare disease community with the objective of meeting their complex needs.
As expressed by Durhane Wong-Rieger, Chair of RDI and President and CEO of the Canadian Organization for Rare Disorders (CORD), "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."
However, this commitment alone is not sufficient. This global commitment must now be translated into immediate action at the regional and national levels. For the more than 300 million persons living with a rare disease worldwide, the time to act on the political declaration on universal health coverage is now.
The medical, social and financial challenges faced by people living with a rare disease were underlined during a panel of patient advocates from four different continents, moderated by Durhane Wong-Rieger. During the panel, patient advocates spoke of issues such as delays in diagnosis, limited access to services and the high cost of treatments. The patient advocates emphasized that the financial burden of rare diseases is not limited to medical expenses; they and their families bear significant costs associated with their complex needs, including transportation and rehabilitation. 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. For society, the cost of not diagnosing and not treating rare diseases exceeds the cost of timely appropriate services.
To address these challenges effectively, governments must respect the fundamental human right to health of people living with a rare disease and recognize that their needs are linked specifically to the rarity of their condition. While each rare disease only affects a small number of people, together there are over 6,000 rare diseases affecting four per cent of the population of every country in the world. Without addressing the challenges of this vulnerable population, universal health coverage cannot succeed.
Wong-Rieger added, "As importantly, 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."
That is why RDI and its partners are calling on member states to mobilize efforts to provide a global framework for action, through the adoption of a World Health Assembly Resolution on Rare Diseases. Now is the time to capitalize on the political will of this moment to improve the lives of people living with a rare disease through adequate funding and resources to ensure that universal health coverage truly leaves no one behind.
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI's mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. RDI has more than 60 member organizations from over 30 countries, that in turn represent rare disease patient groups in more than 100 countries worldwide.
About 1 in 12 Canadians – more than 3 million – are affected by a rare disorder. Two-thirds of them are children. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. Right now, only 60 per cent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the U.S. and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
About 80 per cent of rare diseases are caused by genetic changes. One in four children with a rare disease will not live to see their 10th birthday. A rare disease is a condition affecting fewer than 1 person in 2,000 in their lifetime.
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca
SOURCE CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)
Don Sancton on behalf of CORD, +1-514-206-1191, [email protected]
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