Rare Diseases South Africa NPC (RDSA) has issued correspondence to the Honourable Minister of Health, Dr Aaron Motsoaledi requesting support for the upcoming World Health Assembly (WHA) Resolution on Rare Diseases.
The upcoming World Health Assembly, set for Jan 2025, has seen the Arab Republic of Egypt sponsor the WHA Resolution entitled “Rare Diseases: A Priority for Global Health Equity and Inclusion”.
Why a World Health Assembly Resolution?
Persons Living with a Rare Disease continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens. A WHA Resolution on Rare Diseases will aim to address these challenges through a comprehensive global framework that includes raising awareness, improving diagnosis, enhancing access to care and treatment, and fostering research and development of therapies.
Context of Rare Diseases in relation to Policy Development
“We are few. We are many.” Each rare disease may in and of itself be rare, but the 6,000+ identified rare diseases affect more than 300 million persons worldwide, a conservative estimate. Rare diseases are at a flex point. They were once thought of as a disparate assortment of isolated conditions believed to affect few people, often in a devastating way, that were considered either too difficult to address or not worth understanding, diagnosing, treating, and supporting. Today, thanks both, to the mobilisation of the civil society - patient and families empowerment, researchers and clinicians actions-, catalysing actions for each disease locally and internationally as well as across all rare diseases to address their common challenges, science is advancing, healthcare provision is improving, policies are emerging in more countries, translating into more people being diagnosed as well as longer survival, better care and well-being for an increasing number of conditions and persons.
Nevertheless, despite significant recent advances in health innovation, research and development, and progress towards Universal Health Coverage (UHC), rare diseases remain a significant unmet need in healthcare. For a broad range of reasons including limited health budgets, resources, and expertise, Persons Living with a Rare Disease (PLWRD) across the globe continue to face unique challenges in accessing appropriate care and support.
Many regions and countries have made commendable progress in addressing the needs of PLWRD, but this progress has not been consistent across all communities. To systemically and sustainably improve the rare disease ecosystem, collective action through a collaborative and multisectoral approach is crucial. To ensure that UHC indeed entails “health for all”, rare diseases need to be made a global health priority.
The reality in facts and numbers
How would the support of the Ministry of Health in South Africa help advance the global agenda?
Member States have a unique opportunity to address an existing unmet need in healthcare by adopting a World Health Assembly (WHA) resolution on rare diseases. This action will help shed light on the challenges faced by the more than 300 million PLWRD and will lead to achieving significant returns on investment in science and technology: in policy guided by principles of equity and empowerment, in health systems strengthening for optimized access to diagnosis and care, and in social systems resourcing to support PLWRD and their families. The ideal outcome of a resolution would be for Member States to task the World Health Organization (WHO) with developing a global action plan on rare diseases. A global action plan on rare diseases is urgently needed to propose sustainable and systemic solutions for a better global ecosystem for rare diseases, to ensure greater equity for all PLWRD worldwide, to reach the Global Health 2035 Goals, and to make UHC a reality.
Persons living with a rare disease face distinct and significant challenges that arise from the infrequency of their medical condition, such as a long diagnostic journey, inadequate clinical management, and limited access to effective treatments. The burden of rare diseases on patients, their caregivers and families, healthcare systems, and society overall, merits greater visibility and recognition.
What are the persistent challenges for Rare Disease patients?
The Diagnostic Journey
95% of rare diseases do not currently have an available treatment.
Access to treatment remains fragmented.
Access to Care and Support
Stigmatization
Will South Africa take a lead role?
By adopting a WHA resolution on rare diseases, Member States have the opportunity to strengthen their positions as leaders in healthcare innovation and advocacy while reaffirming their commitment to leaving no one behind in the ultimate pursuit of health for all and to contribute their respective expertise and resources to improve the lives of PLWRD not only nationally, but globally.
The WHA resolution, and ideally the resulting global action plan, will be the catalyst that urges Member States to work together towards enhancing policy processes, advancing research, accelerating innovation, and improving access to care for PLWRD worldwide. This will ultimately ensure that PLWRD are included in the critical work being done to advance UHC across the globe.
To read the correspondence sent to the Minister of Health, click here
Do you think South Africa is well placed to support a WHA Resolution for Rare Diseases?
Yes
No
Should you wish to assist Rare Diseases South Africa NPC in our Advocacy initiatives please reach out to us at support@rarediseases.co.za
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