Sens. Orrin Hatch, R-Utah, and Amy Klobuchar, D-Minn., will jointly lead the Rare Disease Congressional Caucus, which aims to bring public and congressional awareness to the needs of the rare disease community.
Hatch and Klobuchar’s new role offers an opportunity to work with patients, physicians, scientists and the medical industry to create opportunities to address roadblocks in access to and development of crucial treatments.
The caucus works to give a permanent voice to the rare disease community on Capitol Hill and highlight the broad benefits of work on rare disease.
“Throughout my time in the Senate, I have worked hard to help the 30 million Americans with rare diseases,” Hatch said in a statement. “While we have previously taken important steps, like passing the Orphan Drug Act, the fact that 95 percent of rare diseases currently have no treatment shows that much more needs to be done. Sen. Klobuchar has been a terrific partner on legislation to get vital treatments to patients in need, and I am honored to join her (in this endeavor).”
“While there are about 7,000 known rare diseases, there are fewer than 500 drugs approved to treat any of those conditions,” Klobuchar said in the statement. “It is critical that we work together to increase the number of safe, effective and affordable treatments that are available for people with rare diseases.”
Hatch, a member and former chairman of the Senate’s Health, Education, Labor and Pensions Committee, was an author of the Orphan Drug Act, which provides market exclusivity, tax credits and other incentives to drugs that treat diseases affecting less than 200,000 people.
Hatch and Klobuchar are co-sponsors of the OPEN ACT, legislation that builds on the success of the Orphan Drug Act to provide incentives to increase market potential for companies that “repurpose” previously approved drugs for the treatment of rare diseases.