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State of the Union is Stronger with Right to Try

February 6, 2019

February 6, 2019

In last night’s State of the Union address, President Donald Trump hailed the passage of federal Right to Try legislation as one of the nation’s top accomplishments of 2018. Fittingly, the president’s remarks came on a day of incredible Right to Try news.

“And to give critically ill patients access to lifesaving cures, we passed—very importantly—Right to Try.”

President Trump, State of the Union address

Under Right to Try, a patient facing a life-threatening disease who has exhausted FDA-approved options may seek the treatment from the manufacturer without having to first navigate bureaucratic and time-consuming federal red tape. Earlier yesterday, we learned of one such story.

Former U.S. Navy pilot Matt Bellina announced on Facebook that he is receiving treatment for amyotrophic lateral sclerosis (ALS) under the federal Right to Try law. Bellina was diagnosed with ALS in 2014, had exhausted the treatment options available to him, and successfully fought for the right to try investigational treatments so that he and others in his situation could have hope.

“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. Since his treatment began, he has experienced “increased core strength and coordination,” which now allows him to pull himself up to standing. 

Bellina’s good news was especially well-received by Jordan McLinn, an Indiana boy who suffers from a fatal form of muscular dystrophy called Duchenne. Jordan and his mom Laura advocated for the passage of Right to Try in their home state, and together with Bellina fought for its passage in Congress. The federal law, which President Trump signed in May 2018, was named in Jordan and Matt’s honor. Laura shared their support for Bellina on Twitter when they heard the good news.

Bellina’s story isn’t the only one. Earlier this year, it was reported that a California patient with an aggressive form of brain cancer is being treated with an investigational vaccine currently in Phase 2 clinical trials under the Right to Try law.

The Right to Try movement is based on the belief that no patient facing a terminal illness should have to beg the federal government for permission to save their own life. The law puts the most personal healthcare decisions back in the rightful hands of patients and their families, without having to wait on government consent. Right to Try was developed by the Goldwater Institute and has been enacted by 41 states, in addition to at the federal level.



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