In a life-affirming victory for Coloradans with rare diseases, the Centennial State became the thirteenth state to enact the Goldwater Institute’s Right to Try for Individualized Treatments—a groundbreaking, nonpartisan new law that empowers patients to seek cutting-edge personalized treatments designed just for them.
Sponsored by Minority Leader Rose Pugliese, Representative Lindsay Gilchrist, Senator Barbara Kirkmeyer and Senator Lindsey Daughtery, and signed into law by Governor Jared Polis, HB 1270 expands Goldwater’s original Right to Try law to potentially lifesaving treatments that are designed specifically for individual patients.
In enacting this innovative reform, Colorado joins a growing national movement to empower Americans facing rare and ultra-rare diseases to work with their physicians to seek highly-specialized treatments designed specifically for the individual. Colorado joins Louisiana, Maryland, Mississippi, Arizona, Nevada, North Carolina, Arkansas, Tennessee, Indiana, Kansas, Georgia and South Dakota in championing this crucial legislation. The Colorado legislature’s unanimous support of HB 1270 truly demonstrates the bipartisan nature of the movement to enact the Right to Try for Individualized Treatments Act.
“This bill is about restoring hope and choice to patients facing the most difficult diagnoses,” said Minority Leader Rose Pugliese, who sponsored HB 1270 in the House of Representatives. “When all approved options have been exhausted, individuals should have the freedom to work with their doctors to pursue promising, individualized treatments—without unnecessary government barriers. We heard from many patients and families about how the Right to Try has given them hope for the future, and I am so happy I could bring that hope to Colorado.”
Who Will This Law Help?
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 said, 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.
Why Do We Need It?
This new law marks a profound shift toward personalized medicine and a much-needed acknowledgment of the limitations within the traditional regulatory framework. The Right to Try for Individualized Treatments 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 Colorado are stepping up to fill this void, ensuring patients are not denied access to potentially life-saving treatments due to bureaucratic obstacles.
What Comes Next?
This victory in Colorado 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.
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 Minority Leader Rose Pugliese, Representative Lindsay Gilchrist, Senator Barbara Kirkmeyer, Senator Lindsey Daughtery, Governor Jared Polis, Cystic Fibrosis United, Jennifer Reinhardt, Bridget Dandaraw-Seritt and all the dedicated patient advocates in Colorado who championed this life-affirming legislation.
You can read more about the Right to Try for Individualized Treatments here.
Brian Norman is the Director of State Affairs at the Goldwater Institute.
