WASHINGTON — One of the namesakes of the federal “right-to-try” law confirmed Tuesday that he gained access to an experimental treatment thanks to the new law.
Matt Bellina, who has ALS, thanked the drug company BrainStorm for providing the treatment on Facebook.
“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.”
While the announcement was quickly lauded by right to try advocates, it does little to bring the majority of patients suffering from fatal diseases closer to treatment under the new pathway. Bellina is now one of only two patients who have been treated under the right-to-try pathway since President Trump signed the legislation in May.
BrainStorm, which is currently running a Phase 3 trial for a stem cell treatment for ALS, has said publicly it will not give the treatment to patients other than Bellina under right to try.
The company has cited financial difficulties providing the treatment to patients that cannot pay, but said they would provide Bellina access as a thank you for his advocacy around the law.
Bellina acknowledged the struggles of other ALS patients to gain access Tuesday. “For all of my brothers and sisters in the ALS community, I know I didn’t deserve this opportunity any more than you did,” Bellina wrote. “I only hope I can earn the blessing of your friendship by fighting every day until you all have the same opportunity.”
While Bellina’s treatment does not move the ball forward for those patients, it was applauded by the libertarian Goldwater Institute, which was a driving force behind the federal law. “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,” the Arizona-based nonprofit wrote in a blog post Tuesday.
The news also comes at an opportune time for Trump, who may point to right to try in tonight’s State of the Union as one of his administration’s key accomplishments in the last year. He gave the effort a high profile shout-out in his 2018 address.