21st Century Cures & Open Act

From the website of the EveryLife Foundation

Historic Vote in House Passes 21st Century Cures and the OPEN ACT with 344 ayes, 77 noes

21st centuryAfter more than a year of working with the patient community and other experts on drug development, Members of Congress came together from both sides of the aisle this week to pass the 21st Century Cures Act in the House of Representatives.  This signals the latest in a series of hurdles the legislation must pass through before it is signed in to law.  We applaud Chairman Upton, Representative DeGette, House Leadership and all the rare disease advocates who took action to help pass this lifesaving legislation.  We are especially grateful that the OPEN ACT, legislation proposed by the Foundation to repurpose drugs for rare diseases, was included in the 21st Century Cures legislation.  Special thanks to RASopathies advocates Lisa and Max Schill who represented the rare disease community on the House Floor today to help Members cast their votes for this historic bill.  With the bill now set to go before the Senate, it is more crucial than ever that we build support to ensure this legislation reaches the President’s desk by the end of the year.  Click here to learn more about what’s in the bill.  For latest news, stay tuned to the EveryLife and RDLA Facebook & Twitter pages.

 

 

Open Act

From the website of Representative Gus Bilirakis (R-FL):

Washington, D.C. – Representative Gus Bilirakis, member of the House Energy and Commerce Subcommittee on Health, today introduced H.R. 5750, the Orphan Product Extensions Now Accelerating Cures & Treatments (OPEN ACT). The OPEN ACT will incentivize drug makers and innovators to “repurpose” major market drugs for life-threatening rare diseases and pediatric cancers, which opens the door to the development of hundreds of safe, effective, and affordable treatments for rare disease patients.

“There are over 7,000 rare diseases, impacting 30 million Americans – that is nearly one in ten people. Over 95% of these diseases have no treatments, because each rare disease impacts a small number of patients. My bill will leverage the free market to incentivize drugs to be repurposed to treat rare diseases,” Bilirakis said. “The OPEN ACT has the potential to result in hundreds of new drugs and treatments for individuals with rare diseases, as well as a new surge in biotechnology jobs and investments. This bill can help millions of people by ensuring medications are safe and effective for rare conditions, and can be reimbursed through insurance coverage.”

Below is a video of the bill’s introduction in the House: