Phoenix—Former U.S. Navy pilot Matt Bellina lives with amyotrophic lateral sclerosis (ALS), and since the time of his diagnosis in 2014, he had exhausted the treatment options available to him. But he successfully fought for the right to try investigational treatments so that he and others in his situation could have hope. Today, the Goldwater Institute is pleased to learn that Bellina is undergoing treatment for ALS under the federal Right to Try law. The treatment, NurOwn, is currently in Phase 3 trials.
In a Facebook post today, Bellina announced that he began the investigational treatment one month ago. Since his treatment began, he has experienced “increased core strength and coordination,” which now allows him to pull himself up to standing. Additionally, he has seen “subjective improvement” in his speech and swallowing. “I have been given a gift,” Bellina wrote of his treatment. “Because this is an investigational therapy we don’t know what tomorrow will bring but for now we are feeling incredibly blessed,” he continued.
Bellina, a married father of three, is one of the namesakes of the federal Right to Try laws, signed by President Trump this past May with bipartisan support. At the core of the Right to Try movement is the belief that terminally ill patients should have the ability to try to save their own lives without seeking consent from the government. Working in tandem with the current FDA approval process, Right to Try empowers patients who have run out of FDA-approved options and are unable to participate in clinical trials to seek treatments that have passed a Phase 1 safety trial directly from the manufacturer. By removing bureaucratic hurdles, Right to Try makes healthcare for the terminally ill more patient-centric, giving these patients and their families a greater say in care decisions.
“Matt Bellina’s leadership helped make federal Right to Try legislation a reality, and we are extremely glad to learn that he is receiving treatment under the law,” Goldwater Institute President and CEO Victor Riches said. “For those with life-threatening illnesses—patients like Matt—Right to Try provides an important avenue to treatments that could prolong or save their lives.”
Below is Bellina’s full statement on his treatment as shared in his Facebook post. Bellina has also shared videos of his progress in the post:
“I have been given a gift.
“Many of you read last June that Brainstorm would be treating me with the experimental treatment of Nurown under the new federal Right to Try law. Today I want to thank the company and CEO Chaim Lebovitz for following through and keeping their word. Only one month after my first round of treatment I have improvement in the clinical strength of my right deltoid and my left bicep. My forced vital lung capacity is 23% higher and I am seeing subjective improvement in my speech and swallowing. I no longer need a bi pap at night. Due to increased core strength and coordination I am now able to pull myself up to standing. Because this is an investigational therapy we don’t know what tomorrow will bring but for now we are feeling incredibly blessed.
“In addition to Chaim and the people at Brainstorm there are a few others I need to thank. To Jim Worthington and the NAC and all my friends and family who got this law passed, you are heroes. The bipartisan group of political leaders who never gave up on the bill; especially Congressman Brian Fitzpatrick and Senators Ron Johnson and Joe Donnelly. I also need to thank President Donald Trump and Vice President Mike Pence for making this law a reality. To the medical team that administered this treatment, thank you for blazing this path.
“For all of my brothers and sisters in the ALS community, I know I didn’t deserve this opportunity any more than you did. This is a group of people facing extraordinary hardship that has banded together to make the world a better place. I only hope I can earn the blessing of your friendship by fighting every day until you all have the same opportunity.”