At a hearing of the Senate Committee on Public Health and Welfare, proponents testified in favor of Senate Bill 250, the "Right to Try for Individualized Treatments Act," which would let certain manufacturers and eligible facilities make individualized investigational drugs, biologics or devices available to patients when recommended by a physician.
The bill, summarized by committee staff member Jenna, would allow a manufacturer operating within an eligible facility that holds a Federal Wide Assurance (FWA) to provide an ‘‘individualized investigational treatment’’ — treatments created uniquely for a single patient based on that patient’s genetic profile — and to require the patient to pay associated costs. Jenna told the committee the bill would not expand what insurers must cover and that a governmental agency may choose to pay costs. The bill would take effect on publication of the statute book (July 1), according to Jenna.
The measure matters, proponents said, because current federal regulatory pathways were not designed for bespoke, DNA‑based therapies. Patrick Bailey, a doctor with the Goldwater Institute, told the committee, "This legislation is vital for preserving the right to try to save one's own life without being required to plead with the federal government for permission to do so." Bailey said the change would create a physician-directed pathway for patients with "ultra rare life threatening or debilitating diseases" for whom there are no other options.
Family witnesses described personal experience that they said motivates the bill. Jason Kaufman, who said his 7-year-old daughter was diagnosed with a diffuse intrinsic pontine glioma (DIPG), described searching for treatments online and being unable to obtain off-label and investigational therapies through U.S. providers. "No parent should ever hear the words I had to hear," Kaufman said, describing the initial prognosis and his efforts to find options. Kendra Riley, whose younger daughter received a personalized gene therapy abroad, said her family relocated to Milan because the treatment was not available in the U.S.: "We had to pack up our family and relocate to Milan, Italy for half a year," she said, adding that the therapy had been life‑saving for her younger child.
Committee members asked about patient safety and legal conflicts with federal law. Bailey said institutions providing such treatments would rely on professional review by an institutional review board (IRB) at an eligible facility (the FWA/IRB process) and that the bill does not change the federal Right to Try statute but would update state law to address individualized, DNA‑based therapies. Jenna summarized other provisions she read into the record: heirs would not be liable for outstanding treatment debt if a patient dies while receiving an individualized investigational treatment; the bill would not create a private cause of action against a manufacturer; and mandatory insurer coverage for clinical trial participation would not be affected.
The committee chair closed the proponent testimony and said the hearing was ended; the committee plans to take final action on Senate Bill 250 on Monday.
Ending: The committee record includes written proponent and neutral testimony; no opponents spoke during the oral record. The committee did not take a final vote on SB 250 at this hearing.