FOR IMMEDIATE RELEASE

December 16, 2015

Media Contacts:

Matt Whitlock (Hatch): 202-228-0210

Colin Milligan (Klobuchar): 202-228-6317

Sen. Hatch and Sen. Klobuchar Become Senate Co-Chairs of Rare Disease Congressional Caucus

WASHINGTON—Sen. Orrin Hatch, R-Utah, a member and former chairman of the Senate Health, Education, Labor, and Pensions Committee, and Sen. Amy Klobuchar, D-Minn., have joined the Rare Disease Congressional Caucus as Senate co-chairs to bring public and Congressional awareness to the unique needs of the rare disease community. Their new role is an opportunity to work with patients, physicians, scientists, and 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,” Sen. Hatch said. “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. Senator Klobuchar has been a terrific partner on legislation to get vital treatments to patients in need, and I am honored to join her as Senate Co-Chairs of the Rare Disease Congressional Caucus.”

“While there are about 7,000 known rare diseases, there are fewer than 500 drugs approved to treat any of those conditions,” Sen. Klobuchar said. “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. I have long worked with Senator Hatch on this issue and I look forward to continuing this work as a Senate Co-Chair of the Rare Disease Congressional Caucus.”

Senator Hatch 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. Senators Hatch and Klobuchar are cosponsors 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. In addition, Senator Hatch recently sponsored or cosponsored several other pieces of legislation centered on helping those with rare diseases, including the Dormant Therapies Act and the Advancing Targeted Therapies for Rare Diseases Act.

Senator Klobuchar is a leader in efforts to boost innovation and provide safe options in the treatment of rare diseases. She has consistently called for increased funding for the National Institutes of Health and medical research, which is critical to fueling the next generation of biomedical breakthroughs such as the treatment of rare diseases. She also introduced the OPEN Act with Senator Hatch to increase the number of safe, effective, and affordable treatments that are available for people with rare diseases.