April 23, 2019

When he was diagnosed with a rare lymphatic and endocrine cancer, Marc Hayutin was given months to live. Today, he has lived six years beyond his doctors’ predictions.

That’s because Hayutin was able to access a drug yet to be approved by the U.S. Food & Drug Administration (FDA). He was undergoing treatment when the FDA put a stop to the study he was participating in because they decided they didn’t need any more patient data. Marc was desperate and out of options. But thanks to Right to Try, he has been allowed to complete his treatment. Marc credits Right to Try for saving his life.

Now, nearly one year after Right to Try was signed into federal law, ReasonTV has released a new video looking at the real patients who have advocated for the right to access investigational drugs—and whose lives have changed thanks to having that right restored and protected. Goldwater Executive Vice President Christina Sandefur says that the adoption of Right to Try on the federal level signifies “a real culture change in Washington, D.C. It’s one of the first times in recent history where Congress has told the FDA, ‘you’re overstepping your boundaries.’ And I think that that’s not the end of the story—this is just the beginning.”

In the face of the FDA’s overcaution concerning drug approvals, one reform that has seen widespread support is giving terminally ill patients access to investigational treatments that could save their lives. David Huntley, an ALS patient who advocated for Right to Try but died in July 2015 before it became law, explained that for patients without further FDA-approved options, Right to Try is commonsense. “Without any treatment, I will pass in three to nine months. How is keeping a potentially lifesaving drug from me saving my life? The decision to use an investigational drug to fight a fatal disease should be between a patient and his or her doctor.” Huntley passed away before he could gain access to the investigational treatment he sought.

Matt Bellina is another ALS patient who’s been a strong advocate for Right to Try. In 2016, he testified before Congress about the importance of having Right to Try on the books. “Right now, we have no hope, so it’s either hope or no hope, and this bill…it doesn’t do everything, but it moves us in the direction of having a little bit of hope.” Bellina is now one of the patients to share his story about receiving an investigational drug under the federal Right to Try law. Before beginning this treatment, he could not stand and could barely speak. Just a month after the start of his treatment, he no longer needed a breathing machine at night, he could speak and swallow, and he could pull himself up to standing. While he doesn’t know what tomorrow will bring, he says he feels like he has been “given a gift.”

Right to Try is an important initial step on the path toward a more patient-centric healthcare system in America. “The FDA should never be the decisionmaker,” Sandefur says in the ReasonTV video. “The FDA can require testing, the FDA can make sure that people have enough information so that they can make good decisions, but at the end of the day, it should be the patient and the doctor who are the ones making the decision.”

“When people are fighting for their lives, they shouldn’t have to fight the government as well.”

Watch the full ReasonTV video above to learn more about what Right to Try means for the future of medicine.

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