It seems difficult to find any stakeholders in the orphan drug industry favorable to eliminating the fiscal incentives for orphan drug development. And that includes government representatives from both houses and parties, who are working on a bill that ensures access to the same benefits by a wider range of other rare disease life-saving therapies.
But then again, why is the cut still being discussed?
Big and smaller drugmakers, like Shire, Vertex and ViroPharma, working in the orphan drug space have already stated that if the credit is discarded, they will shelve orphan drugs in development. But members of the Senate have proposed a blank-slate for the situation, which means that orphan drug developers have to justify why they should receive the tax credit.
In response to that position, industry have already adopted a “divide and conquer” strategy to lobby to individual lawmakers, and have asked for a strong engagement from patient and industry organizations, like NORD, BIO and PhRMA to weigh in and advocate about the benefits of these incentives to rare disease patients.
On a recent effort led by NORD, 70 patient organizations sent a letter to key members of Congress in support of maintaining the Orphan Drug Tax Credit (ODTC), urging lawmakers to keep this critical tax credit in place as tax reform proposals are developed.
Analysts and lobbyists believe the issue should be addressed next fall.
Policies and multi-stakeholders collaborations in favor of orphan drug development have always been discussed at the World Orphan Drug Congress USA, and will once again compose the program in the 2014 edition.
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