Senator Hatch’s remarks from the hearing yesterday: “This amendment contains the provisions of the Open act, a bill I’m sponsoring with Senator Klobuchar to promote new therapies for rare diseases. New therapies are essential to help the nearly 20 million Americans suffering from a rare disease or condition. Because complex rare disease populations have limited market potential, there are few economic incentives to develop treatments targeting these diseases. While there are 7,000 rare diseases that impact Americans, 95% of them have no treatment. Drug companies poses considerable scientific knowledge on drugs that have already been approved for common diseases. Some of these drugs could be “repurposed” for the treatment of rare diseases. Repurposing drugs is faster, less expensive, and presents fewer risks than traditional drug development. The Open Act would encourage such repurposing by providing an additional 6 months of market exclusivity for drugs approved by the FDA to treat a rare disease or condition. Finding legislative ways to help medical innovators treat rare diseases has been a top priority of mine for over 30 years since Congressman Henry Waxman and I first championed the Orphan Drug Act in 1983. The Open Act is a logical next step in that effort to close the gap for rare diseases for which we do not have treatments. In addition to increasing the number of rare disease therapies, this legislation will help boost innovation and provide safer options for rare disease patients using drugs off label. This bill enjoys enormous support with the backing of over 150 rare disease organizations and patient advocacy groups. Though I am withdrawing this amendment today, I feel this legislation belongs in any biomedical innovation that is passed by the senate. I recognize this needs to be offset, and would not attempt to move it on the floor without first finding funding. I ask the chairman, ranking member, and members of this committee to work with me as this biomedical innovation effort continues.”

EveryLife Foundation: For more information on the Open Act

Follow EveryLife Foundation on Facebook

For more information on Senator Hatch

Follow Senator Hatch on Facebook