Last year, President Trump called upon Congress to pass the “Right to Try Act,” and this year, he celebrated its passing in his State of the Union address. But it’s been nearly nine months since he signed the bill in May, and only two patients have been treated under the law. Even Frank Mongiello, one of the ALS patients whose name is attached to the law, still hasn’t been able to receive treatment. If Right to Try is federal law, why are so many terminally ill patients still struggling to access treatments?
According to STAT news, it seems that patients are having trouble getting pharmaceutical companies to dole out treatments. After many unreturned phone calls, unsuccessful conversations, and unanswered posts on Twitter, people are wondering whether we can really call Right to Try a success. The hope sold to many dying patients in the years before the bill’s passing seems to be dwindling now that the law is actually in place.
A bit of hope still remains, though, as two patients have received treatment under the law. An anonymous California man with an aggressive brain cancer called glioblastoma began investigational treatments last November. We also learned Tuesday that Matt Bellina, one of the advocates for whom the law is named, has begun treatments for ALS.
Bellina is receiving BrainStorm Cell Therapeutic’s drug NurOwn, which is currently in a Phase 3 clinical trial. Back in June, the company suggested they’d be open to making the drug available for patients through Right to Try. But the company quickly retracted their statement, citing financial reasons. The treatment would supposedly cost around $300,000, and they company claimed they couldn’t find funding for those unable to afford it. Bellina’s treatment is the one exception they made, which left many other patients confused and devastated.
Mongiello and his family, as well as patients like him, are frustrated by the outcome of the law so far. Upon reaching out to several drug companies like BrainStorm, they either receive rejections or no answers at all. Many believe that more FDA guidance and support will be the answer to this problem. Others think it’s just going to take some more awareness, education, and persuasion.
Bellina himself acknowledged this seemingly unjust decision in a recent 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.”
People like Bellina who are willing to keep fighting and advocating are likely the best chance patients have to get treated under the law. But the patients waiting for treatment are unfortunately running out of time. If drug companies don’t get on board soon, many will die without getting the chance to try one more treatment.
Editor’s Note: To learn more about the “Right to Try” law, click here to visit their website.