November 27, 2019
By Victor Riches
Thanksgiving is the perfect time to consider the myriad reasons why we should be grateful. For the freedoms we have, for the plenty we enjoy, for the family we can make memories with, for the health that sustains us. These things are not a given—and for Americans like Matt Bellina, they are especially precious.
Matt was a U.S. Navy pilot with a young family, but a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in 2014 took his life on a different path. Things that come effortlessly to most of us became a daily struggle for him. Before long, Matt was out of treatment options, facing a terminal diagnosis with little hope.
But Right to Try became a game changer for Matt and his family. Under Right to Try—pioneered by the Goldwater Institute—terminally ill patients would be able to access investigational treatments yet to receive final approval by the U.S. Food & Drug Administration (FDA). And for patients like Matt who had already exhausted the FDA-approved treatment possibilities available to them, Right to Try could provide a needed jolt of hope. Matt became one of the trailblazers advocating for Right to Try laws, and he was on stage beside President Trump when Right to Try legislation was signed into federal law in May 2018.
By the time Right to Try became federal law, Matt didn’t know if he’d ever benefit: He was basically wheelchair-bound and unable to speak, and he needed to use a breathing machine to sleep. But his Right to Try story wasn’t done: Not only had he been one of the strongest advocates of the law, but he became one of its first beneficiaries. In early 2019, Matt announced on his Facebook page that he had begun an investigational treatment called NurOwn—currently in Phase 3 trials—under the federal Right to Try law. He explained that within weeks of beginning the treatment, he could pull himself up to standing from his wheelchair. He no longer needed the breathing machine to sleep, and he even saw improvement in his ability to talk. The Goldwater Institute was extremely proud to welcome Matt at our 2019 Annual Dinner earlier this month and honor him with our Freedom Award, in tribute to and in celebration of his commitment to help give patients the Right to Try.
At the Goldwater Annual Dinner, Matt spoke eloquently about the federal Right to Try law and how it empowers terminally ill patients to try to save their own lives. “Medical innovation is always going to be market-driven no matter how much some people want to believe it can be different,” he said. “But the law is also consistent with the ideal of individual liberty and the infinite potential for anyone brave enough to pursue it.” Matt encouraged patients like him to remain strong in the face of those who say Right to Try peddles a false hope: “The path to grace has always been through rugged individualism, and I am here tonight to thank all of you for being courageous enough to fight for it.” (You can read Matt’s full speech here.)
Especially at this time of year, Matt’s journey is an inspiring reminder of how to live one’s life with grace and gratitude. As he wrote his Facebook post earlier this year announcing his treatment, Matt understands there’s no guarantee that the positive progress he has seen will continue, but at least for right now, he says, “I have been given a gift…Because this is an investigational therapy we don’t know what tomorrow will bring but for now we are feeling incredibly blessed.” Matt continues his work to give terminally ill patients like him the same opportunity to receive such a gift.
The gift of more time—maybe another baseball game with the kids, a family reunion or vacation, or perhaps another meal around the Thanksgiving table—it’s impossible to put a price tag on that gift. This week, I ask you to think about Matt Bellina and his family. It’s easy to take for granted all the gifts we have in our lives—Matt and his family remind us what true grace is all about.
Victor Riches is President and CEO of the Goldwater Institute.