Minutes for SB250 - Committee on Public Health and Welfare

Short Title

Enacting the right to try for individualized treatments act to permit a manufacturer to make an individualized investigative treatment available to a requesting patient.

Minutes Content for Fri, Feb 14, 2025

The hearing on SB250 was opened.

Jenna Moyer, Office of Revisor of Statutes, gave an overview of the bill. (Attachment 1)

Patrick Bailey, Goldwater Institute, Arizona, testified in favor of the legislation. His agency supports the ability of individuals to obtain certain treatment for rare diseases that are not yet fully approved by the Federal Drug Administration. (Attachment 2)

The conferee responded to questions.

Jason Kaufman, testified in support of the legislation. He shared his family situation involving his daughter, who has a rare health condition. (Attachment 3)

The conferee responded to questions.

Kendra Riley testified in support of the legislation. She shared the experience of spending six months in Italy to obtain life saving treatment for one of her daughters, who has a rare genetic disorder. The treatment was successful. (Attachment 4).

WRITTEN ONLY TESTIMONY

Rich DeAugustinis. (Attachment 5)

Elizabeth Patton, (Attachment 6)

Elijah Stacy (Attachment 7)

Susan Gile (Attachment 8)

The hearing on SB250 was closed.