U.S. Rep. Josh Gottheimer, D-5th District, on Friday said he will introduce legislation next week designed to fully reinstate the Orphan Drug Tax Credit that will help ensure research and development on diseases that are very rare and give encouragement and financial incentive to help companies cover the cost of doing research.
“Unfortunately much of this research will not lead to a cure so you have to try and try again. But when we find them these cures will help not just only the one orphan disease but it often helps other diseases and leads to other cures,” Gottheimer said of Cameron’s Law at a roundtable in Fair Lawn.
Gottheimer said that the tax credit was taken away in 2017 when the tax hike bill passed. Part of how it was paid for, said Gottheimer, was by cutting the Orphan Drug Tax Credit.
Gottheimer cited several New Jersey-based companies – including Allergan and Amicus Therapeutics – that have been given recent FDA approval of orphan drugs. Fair Lawn-based Zimmer Biomet, a medical device company was also given FDA approval for a spinal device that addresses a rare disease.
Gottheimer said that he has received excellent feedback and support from life sciences companies and patient advocates in New Jersey. “It’s one of those things that everyone is aligned on we just have to get it done.”
Rare disease advocates, pharmaceutical, medical device companies, patients and family members who have been afflicted by a rare disease joined Gotteheimer during the roundtable.
At the conclusion, The HealthCare Institute of New Jersey honored Gottheimer with the 2020 HINJ Recognition Award for Patient Access and Advocacy.
HINJ President and Chief Executive Officer Dean Paranicas said that Gottheimer is a leader in protecting the patient community by encouraging the research and development of new medicines and medical technologies, particularly for those disease states that currently have limited or now treatment options.
HINJ and the New Jersey Rare Action Network organized the roundtable. Participants included the ALS Association, Congenital Hyperinsulinism International, and the Rare Advocacy Movement.