Addressing Rare Diseases: The Right to Health Perspective
This content delves into the intersection of rare diseases and the right to health, emphasizing the importance of ensuring access to quality treatment and support for individuals with rare diseases. It discusses the analytical framework, challenges, and opportunities in addressing rare diseases as a human rights and public health issue. The text highlights the need for affordable and accessible medicines, research and development initiatives, and equitable healthcare policies.
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Presentation Transcript
The Right to Health and Rare Diseases Dainius P ras UN Special Rapporteur on the Right to Health International Policy event The Right to Health: The Rare Diseases Perspective . February 10, 2017
RIGHT TO HEALTH MANDATE Mandate established in 2002. Paul Hunt (2002-2008), Anand Grover (2008-2014) This mandate is a part of UN Special Procedures mechanism Primary Objectives: Promote & clarify right to health Identify good practices Not right to be healthy, but right to the enjoyment of the highest attainable standard of physical and mental health Not just right to medical care, but also right to determinants of health
ANALYTICAL FRAMEWORK Progressive realization and obligations of immediate effect Respect, protect and fulfill Available, accessible, acceptable, quality healthcare Non-discrimination, equality and vulnerability Meaningful participation Monitoring and accountability
THEMES Indicators and benchmarks Health systems Health and human rights movement Access to essential medicines Sexual and reproductive rights Vulnerable groups HIV/AIDS, LGBT, disability, substance abuse, elderly, migrants Underlying determinants
WAY FORWARD: CHALLENGES AND OPPORTUNITIES Address existing imbalances and power asymmetries within and beyond healthcare systems Transition from Millennium Development Goals (MDGs) to Sustainable Development Goals SDGs). Agenda 2030. UHC Life Cycle Approach importance of investing in children s health Mental health and emotional well-being for all in all ages Making healthcare policies and systems transparent and accountable, to ensure equitable healthcare. Choosing wisely initiative
CHILDHOOD Right to life and survival What about right to healthy development? Early childhood adversities Children who are ill with rare diseases should not be discriminated. They have a right to quality treatment, care and support
The need to address rare diseases as a human rights and public health issue States must ensure existing medicines are affordable and accessible on a non-discriminatory basis More must be done to encourage the research and development of needed medicines, and to facilitate the procurement and distribution of those medicines to those population groups and in those countries where they are needed most. Children affected by rare diseases have a right to life, health, good quality of life and holistic development and good quality of treatment and care existing gaps in research, early identification and treatment of rare diseases need to be closed
The need to address rare diseases as a human rights and public health issue A comprehensive approach to rare diseases is needed, including education, research, prevention, diagnosis, care and treatment, social support and inclusion Services and support for patients and families need to be holistic and integrated to provide for the health, disability and social issues often associated with them. Specific funding from governments for research projects on rare diseases is needed Multi-stakeholder platforms are important tools to define and act upon issues in the field of rare diseases International patient registries and biospecimen repositories for rare diseases should be encouraged and available for appropriate use by the rare diseases community. Report of the Secretary General s High Level Panel on Access to medicines
The human rights framework provides a more useful approach for analyzing and responding to modern public health challenges than any framework thus far available with the biomedical tradition. Jonathan Mann Health and human rights, HIV/AIDS physician & advocate
