By Heather Curry
Hope is on the horizon for Nevadans with rare diseases after Nevada legislators voted on April 25, 33-9, to advance the Goldwater Institute’s Right to Try for Individualized Treatments reform out of the state Assembly.
Championed by Assemblywoman Heidi Kasama and Senator James Ohrenschall, Assembly Bill 188 allows patients with rare or ultra-rare diseases to work with their physicians to seek cutting-edge, personalized treatments without first begging the federal government for permission. This landmark reform, which the Goldwater Institute first enacted last year in Arizona, expands Goldwater’s original Right to Try Act, federal legislation that protects terminally ill patients’ right to access potentially lifesaving treatments moving through the U.S. Food and Drug Administration’s (FDA) approval process.
Now, the reform moves on to the state Senate.
Earlier this month, Goldwater noted that in 2015, Nevada legislators approved the original Right to Try at the state level to allow terminally ill patients access to investigational treatments that have completed an FDA-approved phase 1 clinical trial. But for Americans with rare diseases, where treatments are increasingly designed for an individual patient using his or her own genetics, the existing pathway is not broad enough. AB 188 recognizes the challenges of this reality and extends the benefits of the original Right to Try to these patients.
Speaking directly to legislators before the bill passed the Nevada Assembly Committee on Health and Human Services, numerous patient advocates and medical professionals, as well as Joshua Smith of the biopharmaceutical company Immunacor, provided compelling testimony in support of AB 188. Their testimony, viewable here, paints a clear picture of why AB 188 is a critical reform for patients in Nevada.
Dr. Beth McDougall, who has 25 years of experience treating patients with severely debilitating diseases, explained why AB 188 would help her patients, noting that she’s had to send numerous patients overseas to access safe treatments that are blocked in the United States:
[M]any times over the years, I’ve had to send people outside of the United States, because…we can identify precisely an immunomodulatory agent…that could help them in their situation and oftentimes those medications are not approved in the United States. So, sometimes people have familial support and the resources…to fly somewhere else to get their treatments and very often they don’t. …So to be able to offer them therapies locally is really something that I am passionate about.
Goldwater Vice President for Healthcare Policy Naomi Lopez, meanwhile, pointed out that Americans are in the midst of a medical revolution where new treatments are discovered almost daily. Rare genetic diseases that used to be a death sentence are now treatable using the patient’s unique and personal genetic information.
Nevada is not alone in pursuing this important reform. Texas and Iowa have both introduced measures to adopt the Right to Try for Individualized Treatments, and more states are expected to follow suit. State-level action protecting Americans’ right to try to save their own life is critical since the U.S. Supreme Court has long recognized that states have great latitude in regulating health and safety, including medical standards—which are primarily and historically protected as a matter of local concern.
The Goldwater Institute commends the Nevada Assembly for advancing AB 188 and urges the state Senate to act quickly to approve this lifesaving reform.
Heather Curry is the Director of Strategic Engagement at the Goldwater Institute. A version of this article appeared on the blog of the Goldwater Institute on April 26, 2023. Reprinted with permission.