Op-Ed: Rep. Bryan Terry Champions Right to Try 2.0 for Tennesseans with Rare Diseases

By Dr. Bryan Terry: New hope for Tennesseeans with rare diseases – Imagine having a spouse, child or loved one suffering from a rare, terminal illness or debilitating condition. After exhausting all treatment options, they find themselves facing the heartbreaking reality of being denied access to potentially life-saving therapies due to bureaucratic hurdles and outdated regulations.

 

For some families, this is their painful reality. Without access to appropriate treatment options for rare and hard-to-treat diseases, they’ve been forced to seek treatment overseas.

The Stacy family was faced with unimaginable choices when their six-year old son, Elijah,  was diagnosed with Duchene muscular dystrophy, a progressive disease that causes muscular degeneration.

 

Now an adult, Elijah has endured a lifetime of frustration with the medical system, but he is a fighter, not just for his health but for reforms like Right to Try for Individualized Treatments. He has seen firsthand how innovative treatments can save lives and he wants everyone facing hardships like this to have that opportunity.

Tennessee enacted the Right to Try Act in 2015 allowing terminally ill individuals to access potentially lifesaving treatments still in the clinical trial or approval process by the U.S. Food and Drug Administration (FDA).

The success of this legislation spoke for itself when Congress adopted a federal version during President Trump’s first term.

“Have you visited the Yard Sale’s three locations?”

 

Over the last decade there have been significant technological advancements and innovations in the development of medical treatments. Now, medication can be tailored to treat specific rare illnesses based on a patient’s genetics.

However, because these treatments are personalized, they aren’t suitable for large-scale clinical trials and state law has not accounted for these advances.

Thankfully, there is hope for terminally ill patients who have exhausted all approved treatments.

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Earlier this year, the Tennessee General Assembly approved the Individualized Investigational Treatment Act, or Right to Try 2.0, building on the original law providing terminally ill patients with a new pathway to cutting-edge treatments while protecting physicians and patients.

In order to access these DNA-specific treatments, an individual must have unsuccessfully tried FDA-approved treatments and provide written consent acknowledging the potential risks involved.

This law ensures patients have the freedom to pursue potentially life-saving treatments, and I think that is something we can all be in support of.

I’m grateful to my colleagues and to Beacon Impact, the advocacy partner of the Beacon Center of Tennessee, for supporting this movement to increase patients’ access to life-saving medical care.

Tennessee continues to be a center for innovation in healthcare, providing its residents with the opportunity to access every potential lifesaving treatment available.

Rep. Bryan Terry, M.D., represents District 48 in the Tennessee House of Representatives which includes part of Rutherford County. He serves as Chairman of the House Health Committee.