Wide support for rare disease policies at UN committee meeting – November 2016

Just as exciting as the inaugural meeting of the Committee for Rare Diseases set up in the UN’s NGO Conference, was the wide range of key people and agencies adding their statements of support for rare diseases as a public health priority.
• The statement from Helen Clark, UNDP Administrator, to the ICORD meeting in Cape Town the previous month, was featured prominently at the CfRD launch, and emphasised rare diseases as an integral part of the Sustainable Development Goals and universal healthcare.
• The opening address to our Cape Town meeting from Ms MP Matsoso, South Africa’s Director-General of Health was also mentioned, with her connections to the WHO and the UN panel adding weight to her statements.
• Also noted was the report from the UN’s high level panel on innovation and medicine access, to whom I made a submission early this year. The panel’s final report made very specific mention of rare diseases as needing priority action alongside other public health priorities like infectious diseases, non-communicable diseases, and antimicrobial resistance. This is a very significant step forward in recognizing rare diseases as a public health priority.
• Additional comments at the UN meeting from the executive director of the WHO, “it is a question of Justice”, and a positive statement from the UN Special Rapporteur on the right to health, clearly demonstrate that the rare disease community had a double victory at the UN meeting. First we got a place at the table, then as we arrived we found they had anticipated and accepted many of the policy positions and arguments we have fought for over many years.
The future suddenly looks brighter for rare diseases at the global policy level. This is a significant gain for our community, reinforced by frequent references by UN and WHO officials to the fundamental principle of the Sustainable Development Goals – “to leave no one behind” – which goals have been signed up to by all countries worldwide. This promises to add a new dimension to academic and policy debates about Public Health, and strengthen the role of patient advocacy groups as they promote acceptance by their own governments.