WASHINGTON, D.C. – Congressman Brian Fitzpatrick (PA-08) announced Monday that his guest at the 2018 State of the Union Address will be US Navy LCDR (Ret.) Matthew Bellina, a Bucks Co. resident and ALS warrior. Together, they will continue the push to pass Fitzpatrick’s Right to Try Act – legislation which would ensure that terminally ill patients, together with their physicians, and pharmaceutical manufacturers are allowed to administer investigational treatments where no alternative exists.
“Each day, families across the country receive the devastating news of a terminal diagnosis. Even with the amazing work done in American medical research and development, for too many, access to these potentially lifesaving treatments will come too late, or not at all. The Right to Try Act opens the opportunity to trial-stage care and establishes the freedom for patients and their doctors to try therapies where the benefits far outweigh the risks,” said Fitzpatrick. “Americans – our constituents – should have every opportunity to fight for their life, or the life of their loved one. Whether it’s a father courageously battling ALS or a brave child living with Duchene Muscular Dystrophy, they deserve the right to try.”
In October, Fitzpatrick and Bellina testified in front of the Committee on Energy and Commerce Subcommittee on Health as part of a hearing on their ‘Right to Try’ legislation. Companion legislation passed the Senate unanimously last August and awaits a vote in the House before it can go to the President’s desk.
The Right to Try Act of 2017 does not undo the FDA approval process, but provides a potential lifeline for those with a terminal diagnosis who cannot wait. Physicians must certify that other options are exhausted or not available and all products must have completed FDA Phase I (safety) testing to prevents “snake oil salesmen” and other bad actors. Moreover, the legislation addresses concerns which could prevent its successful utilization by ensuring patients, doctors, and manufacturers do not assume any additional liability under this act.
Currently, 38 states have signed into law their own Right to Try legislation, including Pennsylvania. Fitzpatrick’s bill ensures that the federal government - and the FDA, specifically - does not interfere with state laws.
Fitzpatrick is a member of the Congressional Rare Disease Caucus.