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Louisiana Lawmakers Advance Right to Try Expansion

May 30, 2024

Patients with rare diseases in Louisiana are one step closer to accessing innovative, customized medical treatments—the latest state to take action in a nationwide movement led by the Goldwater Institute. In a unanimous, nonpartisan show of support, the Louisiana House has moved to send the Hope for Louisiana Patients Act to Governor Jeff Landry for his consideration and approval. This action follows unanimous support for the reform in the Louisiana Senate.

Sponsored by Representative Mark Wright and modeled after the Goldwater Institute’s Right to Try for Individualized Treatments Act, the Hope for Louisiana Patients Act empowers patients with rare and ultra-rare diseases to work with their physicians to seek highly specialized, cutting-edge treatments that are as unique as they are.

With nearly 80% of rare diseases estimated to be genetic in nature, it is no surprise that access to innovative, individualized gene therapies is top of mind for many patients. Sadly, fewer than 5% of rare diseases currently have an FDA approved treatment, largely due to cost constraints and an antiquated regulatory regime. Fortunately, new technologies and recent advances in modern medicine have made it possible for researchers to tailor treatments to an individual patient using his or her own genetics, creating new treatment options for patients.

“Americans are in the midst of a medical revolution where new treatments are discovered almost daily,” Goldwater Institute Senior Fellow Naomi Lopez said. “Some rare genetic diseases that used to be a death sentence are now treatable using the patient’s unique and personal genetic information. House Bill 899 is a significant step to bringing these treatments to patients with rare diseases in Louisiana.”

If signed into law by Governor Landry, this reform will protect the right of patients to pursue customized treatments at the recommendation of their physicians and in concert with multiple layers of strong patient protections.

Louisiana legislators have a long history of leadership on this important issue. In 2014, Louisiana’s legislature approved Goldwater’s Right to Try reform, landmark legislation to protect the right of terminally ill patients to access investigational treatments advancing through the FDA’s approval process. The Hope for Louisiana Patients Act builds on this successful history and demonstrates the enduring commitment of Louisiana lawmakers to protect and empower patients with rare diseases.

In 2022, Arizona became the first state to protect the right of patients to seek personalized treatments, with Nevada following close behind in 2023. Just this session, Governors in both Mississippi and Maryland signed their state’s own version into law. Numerous other states, from Iowa to Texas, are expected to consider the reform in 2025.

The Goldwater Institute thanks Rep. Wright and his co-sponsors, the Pelican Institute, and the many patients and advocates who supported the bill. The Institute also applauds the Louisiana legislature for standing up for patients, and expresses its sincere appreciation to Governor Landry for his consideration of this important reform.

Heather Curry is the Director of Strategic Engagement at the Goldwater Institute, where she leads the Institute’s state and national legislative affairs efforts.

 

 

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