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House committee advances bill to extend Colorado 'right to try' to individualized genetic treatments

2519039 · March 5, 2025
AI-Generated Content: All content on this page was generated by AI to highlight key points from the meeting. For complete details and context, we recommend watching the full video. so we can fix them.

Summary

The House Health and Human Services Committee voted 12-0 to send HB 25-1270 to the Committee of the Whole after testimony from families and patient advocates urging access to individualized investigational treatments for people with rare, terminal or progressive genetic disorders.

Minority Leader Leslie Puglisi, sponsor of HB 25-1270, told the House Health and Human Services Committee her bill would expand Colorado’s existing right-to-try law to cover individualized genetic treatments for people with rare diseases.

The bill’s backers said the change would not create new insurance mandates or add physician liability; it would allow treating doctors and patients an option to try investigational, individualized therapies when no approved treatments exist. “There’s no mandates on insurance companies. No liability for a physician who prescribes a drug and it doesn’t work,” Puglisi said. “There are just options for patients.”

The nut graf: Committee members heard emotional personal testimony from patients and family members who said the change could mean life‑extending or life‑saving options for people running out of time. After roughly an hour of testimony and questions, the committee moved the bill forward on a unanimous vote.

What supporters told the committee

Patient advocates and families described cases in which individualized or non‑FDA-approved therapies were pursued outside the United States or through exceptional-access programs. Kendra Riley, a mother of three, testified that she moved her family to Italy so her infant could receive a personalized gene therapy; she said the procedure “was a life‑saving success” for the child who received it and that the family raised “hundreds of thousands of dollars” in a short period to obtain care abroad.

Elijah Stacy, who said he lives with Duchenne muscular dystrophy, told lawmakers that the federal and state approvals process can move too slowly for people with progressive, terminal conditions. “We don’t have years,” Stacy said. “This is why this bill is critical.”

The Goldwater Institute’s senior fellow in health care policy, Naomi Lopez, described the bill as part of a broader trend among states. “This reform is now law in Arizona, Arkansas, Maryland, Louisiana, Mississippi, Nevada, and North Carolina,” she said, adding that Colorado was an early mover on right‑to‑try policy nationally.

Questions and clarifications

Committee members asked whether the bill would change tort exposure for clinicians or require insurers to pay for experimental treatments; sponsors repeatedly answered that it would not. Representative Kevin McCormick asked whether the main barrier was physicians feeling secure prescribing investigational drugs for single patients; Puglisi answered that the current law is framed for broader categories and this bill is intended to close the “loophole” for individualized treatments.

Formal action

Rep. Gilchrist moved HB 25‑1270 to the Committee of the Whole with a favorable recommendation; Rep. Johnson seconded. The motion passed on a 12–0 roll call with one excused member. Outcome: moved to Committee of the Whole with favorable recommendation.

Why it matters

Supporters said the bill could help a small number of patients with very specific genetic profiles but stressed that each case can be decisive for the affected family. Opponents did not appear in force; the testimony at the hearing was overwhelmingly from patients, family members and patient‑advocacy groups urging the Legislature to expand clinical options.

What’s next

With the committee’s favorable recommendation, HB 25‑1270 will go to the Committee of the Whole. If the full House approves it there, it will move to the Senate for further consideration.

Ending

Committee members who spoke in favor described the measure as narrow in scope and designed specifically to create an option, not an obligation, for patients and doctors. Supporters asked for an “I” or yes vote; the committee endorsed the bill unanimously and advanced it to the next stage.