WASHINGTON — Sen. Ron Johnson (R-Wis.), chairman of the Senate Homeland Security and Governmental Affairs Committee, introduced the Trickett Wendler Right To Try Act of 2016 on Tuesday during a meeting with ALS patients and those affected by the slow federal drug approval process.
The bill is named after a Waukesha woman who died of ALS. It will ensure that terminally ill patients, their doctors, and pharmaceutical manufacturers are allowed to administer investigational treatments where no alternative exists.
“When I really got involved in this was two years ago, when I met a wonderful woman, Trickett Wendler, Tim’s wife, and I just mentioned this new effort I’d heard about with the Goldwater Institute, this ‘right to try,’ ” said Johnson. “Tears started streaming down her face. Just the possibility of giving Trickett some hope: And that’s really what this piece of legislation, what these efforts are really about, is providing patients hope.”
VIDEO: Watch highlights from the press conference here.
Tim Wendler, Trickett Wendler’s husband, added, “Time after time we were just continually disappointed by the lack of progress being made in this area. So hope starts to fade. Having a bill like this introduced, giving somebody an opportunity for hope, is something that’s incredibly important.”
Laura McLinn spoke about her son, Jordan, 7, who has Duchenne muscular dystrophy. She praised “this right to try legislation, which basically gives patients the right to medications that can save their life.”
Matt Bellina, recently diagnosed with ALS, also spoke in support of the legislation, saying, “This is providing hope for us, for a better life. There shouldn’t be anybody standing in the way.”
“We don’t have the luxury of time. Every day, I see my wife and children, my family, and I’m not ready to leave them,” said Frank Mongiello, an ALS patient who spoke up in support of Johnson’s bill.
- Click here for Johnson’s statement on the Trickett Wendler Right To Try Act.
- Click here to learn more about Trickett Wendler’s story.
- Click here to learn more about Matt Bellina’s story.