Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2018

Floor Speech

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Mr. FITZPATRICK. Mr. Speaker, I want to thank Chairman Walden; Mr. Burgess; Mr. Griffith; my friend, Andy Biggs; and Senator Ron Johnson for their resolute commitment to see the Right to Try Act brought to a vot today.

Mr. Speaker, each year, thousands of Americans receive the devastating diagnosis of a terminal illness. And even with the amazing work done in American medical research and development, for too many families, access to these potentially lifesaving treatments will come too late or not at all. As their Representatives, we should each endeavor to support these individuals in their time of need as well as support new pathways to potentially lifesaving treatment.

That is what the right to try is all about. As the chairman indicated, 38 States have passed this bill with near unanimous, bipartisan support. A version of this bill unanimously passed the United States Senate.

However, we know Congress cannot legislate miracles. That is why, when talking about the right to try, we are careful not to represent it as a cure itself. The reality is that, while passing this measure is a step, the families and advocates we have worked closely with for years know that the right to try isn't a guarantee. It is about protecting hope and protecting opportunity--hope and opportunity for those like my constituent, Lieutenant Commander Matthew Bellina, a retired naval aviator and father of three, who was diagnosed with ALS in 2014.

Following the onset of his symptoms, Matt was grounded from flying. He eventually moved back home to Bucks County with his wife, Caitlin, and his three children to be surrounded by family and friends.

Although this disease stopped Matt's military service, he quickly picked up the fight with his new battle, involving himself in the ALS community and becoming a strong advocate for right-to-try legislation. Together with Jim Worthington and the Have a Heart Foundation, Matt advocated for the right to try across the Nation.

While the FDA has a program that allows terminally ill patients to apply for early access to promising treatment, the right to try is needed because the FDA's compassionate use process doesn't help enough people. Only about 1,200 people a year can make it through the current time-consuming and expensive application process. Comparatively, Mr. Speaker, in 2014, more than 12,000 people in France were using investigational treatments through that government's equivalent program.

If a country with one-fifth of the population of the United States can help 900 percent more people, the FDA program clearly is not working. This bill does not gut the FDA or fundamentally change the relationship between doctor and patient. What it does is give Americans facing a terminal diagnosis a new pathway for treatments undergoing clinical trials.

I want to read something in closing, Mr. Speaker, that I received from Matt Bellina, who is with us today. ``Please let them know that I have had ALS too long to meet the exclusion criteria for any promising trials. No drug company will offer me treatments under the current EAP guidelines. Two reputable companies have already indicated that they would try to treat me under the rules of this bill. A vote against this is essentially a vote to kill me. It is a vote to make my wife a widow and leave my boys fatherless. I can't stop anyone from voting that way, but please ask them to have the respect to look my family in the eye when they cast'' that vote.

Mr. Speaker, when a life hangs in the balance, the Federal Government should not stand in the way of access to potentially lifesaving treatment.

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