Right to Try Advocate Continues Fight to Expand Treatment Options

January 16, 2020

Matt Bellina was out of options. Diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), the young father and U.S. Navy pilot had exhausted the FDA-approved treatment possibilities available to him. He and his family were left with little hope for a brighter future. That is, until the Goldwater Institute’s Right to Try law—for which Matt was a tireless advocate—gave him new options.

In a new guest column for the Abigail Alliance, which advocates for greater access to investigational treatments, Bellina talks about his path to receiving one such treatment under the federal Right to Try law. “When I was formally diagnosed in the spring of 2014, I had already been symptomatic too long to qualify for a single FDA-registered clinical trial,” Bellina writes. “There were a few new treatments that I thought looked especially promising, but I knew they were likely too early in the development pipeline to be available in my lifetime.

“So I did what any rational person would do: I started the process of begging companies to let me try their experimental treatments outside of the trial.” Bellina became a leading advocate for terminally ill patients’ right to try investigational treatments in an attempt to save their own lives, teaming up with fellow patient advocates like young Jordan McLinn and with the Goldwater Institute to help change state and federal policy and give patients another chance at life. Bellina was one of the patients beside President Trump as he signed the federal Right to Try legislation in May 2018.

One of the possible investigational treatment options that excited Bellina was NurOwn, a drug in Phase 3 trials—and thanks to Right to Try, Bellina began treatment with NurOwn about a year ago. As Bellina explains, he quickly noticed positive changes once his treatment began: “Within two weeks, I felt the overwhelming urge to stand up out of my wheelchair, so my family propped me up against the kitchen counter and I stood!” And the improvements didn’t stop there, Bellina continues. “Since then I have had six injections and I have regained the ability to stand on my own without assistance. My lung capacity is 37% higher than it was before my first injection, so I no longer need the assistance of a breathing machine. I have gained enough mobility in my arms to scratch my face and even take my glasses off. All of these are improvements from where I was before the treatment.”

Matt Bellina is living proof of what hope can do. He remains on the frontlines of fighting for patient access to investigational treatments, believing that all terminally ill patients should have the opportunity he has been given. The Goldwater Institute was honored to celebrate Bellina’s work with its Freedom Award, which Bellina accepted at Goldwater’s Annual Dinner this past November (you can read Bellina’s full remarks as prepared here).

“For me, Right to Try is as much about moving the needle towards civil liberties as streamlining medical research,” he writes. “Today I am a living example of how both are beneficial, and I want so many more people to share in the experience.” Read more from Matt Bellina in his own words here.