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Louisiana Patients Find New Hope with Landmark Right to Try Expansion

June 24, 2024

Louisiana patients with rare diseases can now seek cutting-edge medical treatments designed just for them thanks to the Hope for Louisiana Patients Law, an innovative new reform signed into law by Governor Jeff Landry. Modeled after the Goldwater Institute’s nonpartisan Right to Try for Individualized Treatments Act, Louisiana’s new reform empowers patients to work with their physicians to pursue specialized treatments that are as unique as they are.

Championed by Representative Mark Wright and approved unanimously in both houses of the state legislature, the Hope for Louisiana Patients Law expands Goldwater’s original Right to Try law to create a dedicated pathway to treatment for patients with rare diseases.

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 a Food and Drug Administration (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. The Hope for Louisiana Patients Law is a significant step to bringing these treatments to patients with rare diseases in the state.”

Louisiana legislators have a long history of leadership on this important issue. In 2014, Louisiana’s legislature approved Goldwater’s original 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.

Goldwater passed the original Right to Try reform in more than 40 states and at the federal level, protecting the right of terminally ill patients to access investigational treatments advancing through the FDA’s approval process. That reform is already saving lives in Louisiana and nationwide, with pharmaceutical companies using Right to Try to treat entire groups of patients in promising new ways. Louisiana’s new law is an essential next step to ensure that all patients have the chance to save their own lives.

The Riley family of Arizona, whose infant daughter Keira was diagnosed with a rare and fatal genetic brain disease, exemplifies why Louisiana’s new reform is so urgently needed in every state. A specialized type of gene therapy could help baby Keira, but it wasn’t available in the U.S. due to FDA restrictions. To save Keira’s life, the Rileys had to uproot their family, leave their lives and support network behind in Arizona, and move to Italy to obtain the treatment. Thousands of other Americans across the country have faced similar heart-wrenching decisions and undertaken drastic measures to ensure their loved ones receive treatment.

“It brings tears to my eyes thinking of all the other special needs families out there who have always held on to hope for a chance like this,” Kendra, Keira’s mom, testified before the Arizona legislature prior to its enactment of Goldwater’s reform.

Louisiana and Arizona aren’t alone in advancing Goldwater’s innovative new reform. In 2023, Nevada enacted similar legislation, with Mississippi and Maryland joining Louisiana in adopting the reform just this session. The Goldwater Institute is dedicated to advancing this new wave of reform across the nation, making it the law of the land.

As the Washington Times Editorial Board put it: “Every American who is facing death from a rare disease deserves the opportunity to pursue whatever cutting-edge technology is available.”

The Hope for Louisiana Patients Law offers just that: a chance at hope and healing for patients in the Pelican State.

The Goldwater Institute is deeply grateful to Representative Wright for his dedication to this reform, and applauds the Louisiana Legislature and Governor Landry for standing up for the state’s most vulnerable patients.

Read more Right to Try success stories here. Learn more about the Right to Try for Individualized Treatments here.

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

 

 

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