RARECast: Rare Disease Advocates Push for Incentives to Drugmakers Pulled from Cures Act


Legislation that would provide incentives to drugmakers to repurpose existing pharmaceuticals as rare disease treatments is once again in the works. Known as The OPEN ACT (Orphan Product Extensions Now, Accelerating Cures and Treatments), proponents say it would help address a gap in the drug development landscape. At one point, the bill had been folded into the 21st Century Cures Act, but had been stripped out before passage. We spoke to Max Bronstein, Chief Advocacy and Science Policy Officer for the Everylife Foundation for Rare Diseases, about the legislation, why its needed, and what it will take to get passed.


RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here. 

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