Arkansas has taken a monumental step forward in patient advocacy and medical innovation by enacting the Right to Try for Individualized Treatments (SB 136), sponsored by Senator Justin Boyd and Representative Zack Gramlich.
In enacting this innovative reform, Arkansas joins a growing national movement to empower Americans facing rare and ultra-rare diseases to work with their physicians to seek highly specialized treatments that are as unique as they are. Arkansas is now the seventh state since 2022 to champion this crucial expansion, joining Louisiana, Maryland, Mississippi, Arizona, Nevada, and North Carolina.
This new law marks a profound shift toward personalized medicine and a much-needed acknowledgment of the limitations within the traditional regulatory framework. SB 136 builds upon the success of the original Right to Try, a reform created by the Goldwater Institute and enacted in 41 states before it was signed into federal law in 2018. The original Right to Try allows terminally ill patients to access investigational treatments that have completed Phase I clinical trials but are not yet approved by the Food and Drug Administration (FDA) – and it is saving lives around the country.
But today, the latest innovations in medicine are made specifically for each patient, based on their genetics, and by definition cannot go through the FDA’s outdated regulatory processes in a timely manner. After all, the FDA’s “one-size-fits-all” clinical trial system is designed for large patient populations and ill-suited for the complexities of rare diseases. With 95% of rare diseases lacking FDA-approved treatments, there’s an urgent need for reform.
The federal government’s slow pace in adapting its regulatory framework has left many patients with limited options. States like Arkansas are stepping up to fill this void, ensuring patients are not denied access to potentially life-saving treatments due to bureaucratic obstacles.
For 23-year-old Elijah Stacy, who has suffered from a rare genetic, progressive muscle-wasting disease called Duchenne muscular dystrophy since he was six, the need for the law is as clear as can be.
“Somebody that doesn’t even know me has written in a law which is stopping me from being able to take a drug today, that could potentially totally change the course of my life,” Elijah says, underscoring the frustration and desperation faced by countless individuals battling rare diseases.
Similarly, the stories of families like the Rileys of Arizona, who were forced to seek treatment abroad when their infant was diagnosed with a rare genetic brain disease, highlight the desperate measures families are forced to take when confronted with limited options.
This victory in Arkansas represents a significant step toward a future where individuals with rare diseases can access the most innovative and promising treatments without begging the federal government for permission.
“It was an honor to sponsor this commonsense expansion of our Right to Try laws,” Senator Boyd said. “Individualized treatments offer promise and hope to patients with rare diseases, and this bill represents an important tool in the provision of care to rare disease patients in Arkansas.”
The Goldwater Institute will continue to urge lawmakers across the nation to adopt these necessary reforms, recognizing the profound impact of the Right to Try for Individualized Treatments on patients and their families. We extend our heartfelt gratitude to Senator Boyd, Representative Gramlich, Governor Sarah Huckabee Sanders, and all the dedicated advocates in Arkansas who championed this life-affirming legislation.
Jen Springman is the Coalitions Manager at the Goldwater Institute, where she works to build and strengthen strategic partnerships to assist in advancing Goldwater’s national policy initiatives.
