December 19, 2019
By Christina Sandefur
Recently, I joined host Landry Ayres of the Cato Institute’s The Pursuit podcast to talk about the most fundamental right of all—the right to try to save your own life. Despite the importance of the issue, medical autonomy—the right to make one’s own medical decisions – has been increasingly undermined by the federal government. The cruel reality is that in the United States, thousands of people every year suffer and die while treatments like these make their way through the slow, bureaucratic federal system—which can take 15 years before potentially lifesaving treatments get approval from the U.S. Food and Drug Administration (FDA).
The McLinn family is all too familiar with this system. On the podcast, we hear from Laura McLinn, mother of Jordan, the bravest little boy I’ve ever met. Just a few months before his fourth birthday, Jordan was diagnosed with Duchenne muscular dystrophy, a fatal muscle-wasting disease that affects about one in 5,000 boys. There were promising treatments making their way through the federal approval process, and luckily, Jordan was one of the fortunate few to be admitted into a clinical trial. But only a handful of boys were able to access those treatments, so the McLinns took up the cause of protecting the right of anyone with a terminal disease to fight for their lives by trying promising medicines that aren’t FDA approved.
That’s why my Goldwater Institute colleagues and I met the McLinns. As I explain on the podcast, we developed the Right to Try because we believe that in our free country, people should be able to decide for themselves—in consultation with their doctors—whether to try medicines that could save their lives, even if they haven’t been fully approved by the FDA. Their lives, after all, belong to them.
Jordan and Laura started advocating for the Right to Try in their home state of Indiana, and Jordan was at then-Governor Mike Pence’s side when he signed the bill into law. The Right to Try movement blossomed—a genuine grassroots reform that was ultimately passed by 41 states. Then, just last year, what seemed impossible became reality when President Donald Trump signed the federal Right to Try Act.
Right to Try has already helped patients all over the country. On the podcast, we tell the story of Matt Bellina, who has been an advocate for the Right to Try ever since he was diagnosed with ALS in 2014. His illness had progressed too far for one FDA-approved treatment and not far enough for the other, so before Right to Try, he was out of options—and out of hope. He could barely stand or speak. But after Right to Try became federal law, Matt was given access an investigational drug, and after the first round of treatment, he could speak and swallow, could pull himself up a standing position, and no longer needed to sleep with a breathing machine. Of course, nobody can know what the future has in store, but these dramatic improvements mean he’s been able to better enjoy time with his wife and three sons. Most importantly to Matt, he was able to make that treatment decision himself, rather than being at the mercy of a federal bureaucrat. A few weeks ago, I was honored to present Matt with the Goldwater Institute Freedom Award for his incredible bravery and perseverance that made Right to Try a reality (you can read Matt’s acceptance speech here).
Why have patients had to fight so hard for a right that is so critical? Professor Jessica Flanigan, author of Pharmaceutical Freedom: Why Patients Have the Right to Self-Medicate, explains on the podcast that the FDA has become very risk-averse. At its inception, the FDA focused on ensuring that products sold to the public were safe and accurately labeled, to help patients make their own choices safely. But over time, the Agency’s focus has drifted from empowering patients to making patients’ choices for them. And the results of that system can be tragic.
But patients are fighting back, and Right to Try marks an important step on the path toward more patient-centric healthcare in America. Today, patients facing one of the deadliest forms of cancer are now being treated under the law thanks to a drug manufacturer that announced a formal program to treat patients under Right to Try. Patients who obtained treatment of Gliovac for glioblastoma, a brain cancer, are now living testaments to the law. This affirms that government must strive to maximize patient choice, not government paternalism.
You can listen to “The Patient’s Right” episode of The Pursuit podcast here.
Christina Sandefur is the Executive Vice President of the Goldwater Institute.