Last year, the United Nations Secretary-General Ban Ki-moon commissioned a High-Level Panel on Innovation and Access to Health Technologies. The panel “review(ed) and assess(ed) proposals and recommended solutions for remedying the policy incoherence between the justifiable rights of inventors, international human rights law, trade rules and public health in the context of health technologies.” The report of their recommendations in published on the United Nations website.
Of interest to the rare disease community is the recommendation to initiate negotiations for a binding Research & Development Convention that de-links the costs of research and development from end prices to promote access to good health for all. This is to combat the rising prices of medications, which is commonly encountered by rare disease patients as orphan medicines can be expensive and in-affordable to many. Also of significance is their recommendation to governments requiring that the unidentified data on all completed and discontinued clinical trials be made publicly available in a format that is internationally recognizable.