The Rare Disease Company Coalition (RDCC) supports Cameron’s Law and the Rare Disease Clinical Trial Pandemic Disruption Act (now called Leo’s Law), two important bills reintroduced this week by Representatives Josh Gottheimer and Don Bacon in honor of Rare Disease Day. These legislative proposals would help to close the innovation gap for rare disease research by encouraging more upfront investment in R&D and by promoting flexible clinical trials that encourage the pursuit of promising treatment options for rare disease patients.
40 years ago, the Orphan Drug Act (ODA) recognized the critical need to provide incentives for rare disease research. The RDCC has called on policymakers to preserve policies that will continue to attract and maintain long-term investment in the development of advanced treatments and diagnostics for rare diseases, and the reintroduction of both these bills is a critical step toward this goal.
Specifically, Cameron’s Law would restore the tax credit for clinical testing expenses from 25% back to the original 50%. Increasing the tax credit to its original parameters would make it more economically feasible for drug companies to develop rare disease treatments and provide needed certainty for continued investment.
The ODA also established the importance of exclusivity for drugs with orphan designation as a critical incentive for rare disease drug development. The Rare Disease Clinical Trial Pandemic Disruption Act (now called Leo’s Law) would extend exclusivity for rare disease clinical trials stalled during the pandemic and ensure promising cures get to the patients who need them.
The RDCC thanks Representatives Josh Gottheimer and Don Bacon for their bipartisan leadership that will directly benefit the lives of the one in 10 people living with a rare disease—half of whom are children. As a coalition of life science companies committed to discovering, developing, and delivering rare disease treatments for the patients we serve, the RDCC is eager to further engage and use our #OneRareVoice to move these bills forward in the 118th Congress.