One year ago during President Trump’s 2018 State of the Union Address, Matt Bellina watched eagerly from the gallery as the president encouraged Congress to pass the Right to Try law. This year, Bellina utilized the law to begin experimental treatment for his ALS. The retired Navy pilot, husband, and father of three fought tirelessly for terminally ill patients like himself to have access to investigational treatments that could save their lives. “If I’m not going to make it anyway, why shouldn’t I get to try?” asked Bellina.
The federal law was passed in May 2018. This past Tuesday, Bellina announced on Facebook that he is using the Trickett Wendler, Frank Mongiello, Jordan McLinn and Matthew Bellina Right to Try Act that bears his name. He publicly acknowledged the company BrainStorm and its CEO Chaim Lebovitz for providing him with access to the drug NurOwn.
Two drug companies, including BrainStorm, told Bellina that they’d be willing to offer him treatment if Right to Try became federal law. BrainStorm’s stem cell treatment for ALS is currently going through a Phase 3 clinical trial, but the company stated that it can’t currently offer the treatment to patients other then Bellina. This has to do with cost. It’s difficult to get the treatment to patients who can’t afford it. Allowing Bellina access was the company’s acknowledgment of his hard work to get the law passed.
According to Bellina, the treatment is already making a difference. “I have been given a gift,” he said. “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 ling capacity is 23% higher and I am seeing subjective improvement in my speech and swallowing.”
President Trump’s 2019 State of the Union address Tuesday evening celebrated his accomplishment in getting the law passed. But we still have a long way to go before it starts to benefit more patients like Bellina. Bellina himself acknowledges this in a Facebook post: “For all of my brothers and sister in the ALS community,” he wrote, “I know I didn’t deserve this opportunity any more than you did. I only hope I can earn the blessing of your friendship by fighting every day until you all have the same opportunity.”
Although supporters of the law are thrilled to see a patient like Bellina begin treatment, the majority are still waiting to see more and more suffering patients gain access to drugs. But right now, one of the law’s major advocates is one step closer to playing a game of touch football with his son, and he won’t stop fighting until everyone has that chance. For that, the world should applaud.
Editor’s Note: To learn more about the “Right to Try” law, click here to visit their website.
