On May 10, 2016, the Newtown Athletic Club Advocacy Team took their fight for the “Right to Try Now” to Capital Hill.
“I could go to several states in our country and choose to die — but my government won’t let me choose to try a medication that might help me,” said former U.S. Navy Prowler pilot and Newtown father Matt Bellina at the recent introduction of the Senate version of Right to Try legislation.
Frank Mongiello, a 48 year old father of six was diagnosed with ALS last year. Frank said, “I have an 80 percent chance to die within the next 2 years. I’m not ready to leave my family and as an American, I have a right to pursue life.”
The Right to Try is a movement that’s taken hold in 27 states across the U.S. That simple phrase would allow terminally ill patients the option of accessing an experimental or trial drug early in the FDA pipeline.
This act authorizes the use of unapproved medical products by patients diagnosed with a terminal illness in accordance with State law, and for other purposes. An “experimental drug, biological product, or device” is defined as one that: (1) has successfully completed a phase 1 clinical investigation; (2) remains under investigation in a clinical trial approved by the Food and Drug Administration; and (3) is not approved, licensed, or cleared for commercial distribution under the Federal Food, Drug, or Cosmetic Act or the Public Health Service Act.
The NAC Advocacy team met with several members of Congress and testified at hearings, briefings and press conferences pressing for support for these pending bills. The NAC advocacy team also met with several Senators and their staff.
Frank Mongiello and Matt Bellina spoke at Senator Ron Johnson’s press conference announcing the Senate version of The Right to Try Act. Additionally, Frank and Matt spoke at a briefing for House of Representatives’ staff about Right to Try legislation. They were also featured lecturers in a Senate staff briefing with Senator Mark Kirk for the REGROW Act. Matt Bellina and Frank Mongiello were invited To Capitol Hill by these Senators to testify in person at these hearings.
All are invited to participate in the Rally for Right To Try in Washington D.C. on Thursday, June 16, 2016 at 1pm. Bus transportation will be provided. Learn more here and watch the touching video below.