On 22 October 2019, the director general of the European Federation of Pharmaceutical Industries and Associations (EFPIA), Nathalie Moll published an article entitled “Living with rare disease: hope for the future, access today”.
This articles reflects previous research and policy developments in the field of rare diseases. More importantly, the article outlines the position of the European pharmaceutical industry trade association, which calls on policy makers to stick to the European Orphan Medical Products (OMP) Regulation that is currently in place and focus on the access to treatments of rare diseases in national health systems.
Ms. Moll calls on the establishment of a High Level Forum on Access to Health Innovation to create an ideal platform to push the discussions among regulators, health system partners, industry and governments about new treatments of rare diseases. She also emphasises that the opening of the OMP Regulation is not sufficient to address the lack of access to new treatments for rare diseases as the regulation has been proven to generate innovation. Other policy measures than the OMP addressing the access of treatments of rare diseases into national health systems need to be carefully chosen as the OMP does not address the given access challenges sufficiently.Â
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