North Carolina Lawmakers Advance Right to Try for Individualized Treatments

Rare disease patients in North Carolina are now one step closer to accessing potentially lifesaving treatments that are designed around their own unique genetic information. This week, North Carolina lawmakers passed the Goldwater Institute’s Right to Try for Individualized Treatments, legislation that allows patients suffering from severely debilitating or life-threatening illnesses to safely access individualized treatments.

Both the House and Senate voted unanimously to advance the measure, demonstrating the nonpartisan momentum behind the nationwide movement for this landmark Right to Try expansion. The bill now awaits Governor Roy Cooper’s signature.

Championed by Representative Allen Chesser and Senator Benton Sawrey, HB 98 allows patients to work with their physician to safely access individualized treatments that are tailor-made for each patient, offering hope to those suffering from rare diseases for which there is no Food and Drug Administration (FDA)-approved treatment. An estimated one million North Carolinians suffer from rare diseases, yet only 5% of rare diseases have a known FDA-approved treatment—partly due to the federal government’s antiquated “one-size fits all” regulatory regime. Thankfully, individualized treatments represent a paradigm shift in the treatment of rare diseases and offer hope to those presently suffering without an available treatment.

“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 98 is a significant step to bringing these treatments to patients with rare diseases in North Carolina.”

North Carolina has a rich history of protecting patients’ right to save their own life. In 2015, North Carolina passed the original Right to Try Act, giving terminally ill patients access to potentially lifesaving drugs that have completed a Phase One clinical trial. Over 40 states went on to pass the original Right to Try before it became federal law in 2018. HB 98 builds on this historic legacy by expanding the Right to Try to investigational individualized treatments.

The Tar Heel State is not alone in advancing reforms allowing patients to access innovative individualized treatments. In 2022, Arizona became the first state to pass similar legislation, with Nevada following suit in 2023. Just this year, Maryland, Mississippi and Louisiana each passed bills protecting a patient’s right to try individualized treatments. Numerous other states are expected to consider this nonpartisan, lifesaving reform next year.

The Goldwater Institute thanks Rep. Chesser, Sen. Sawrey, their co-sponsors, and the many advocates who supported this legislation. The Institute also applauds the North Carolina legislature for unanimously standing up for patients, and expresses its sincere appreciation to Gov. Cooper for his consideration of this lifesaving reform.

Brian Norman is the Director of State Affairs at the Goldwater Institute, where he assists in the development and implementation of Goldwater’s national legislative affairs strategy.