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A proposed "Right to Try" bill continued sailing through the Utah Legislature Tuesday, winning a Senate committee endorsement.
The legislation would allow dying patients to work with doctors, insurers and drug manufacturers to try experimental drugs that are early in the U.S. Food and Drug Administration's vetting process.
Sponsoring Rep. Gage Froerer, R-Huntsville, said the bill "is about hope, dignity, liberty, freedom."
Senate Health and Human Services Committee members sent HB 94 to the full Senate. It previously passed the House, 72-1.
Terminally ill people who have tried everything else would be able to use an experimental drug if it had made it through the first phase of clinical trials. Such drugs have not been proven effective, but are not considered to be dangerous.
The FDA's compassionate use program allows the same thing, but the paperwork involved can be onerous for a patient's doctor.
Earlier this month, as several states began considering Right to Try legislation, the FDA tweaked its application process to make it somewhat easier. Five states already have Right to Try laws, which are being advocated by the conservative Goldwater Institute in Arizona.
Stan Summers, a Box Elder County commissioner, urged the committee to forward the bill because it potentially could help his son, Talan Summers, and others.
The 23-year-old has a rare disease called IGg4 systemic sclerosing disease, which is turning his tissues and organs hard inside. There is no cure, and the disease eventually will kill him.
"If we are going to let these people donate their organs after they're dead, why can't we let them donate their bodies and help … not only themselves but other people in the future?" Summers asked the committee.
Cristina Might of Salt Lake City, whose 7-year-old son Bertrand Might was the first person diagnosed with N-glycanese deficiency (NGLY1), also testified for the bill.
While the FDA is poised to approve a new drug that promises to help him, many other people don't have the option, she said.
"Patients and their families should have the right to try these potentially life-saving drugs," Might said.
Twitter: @Kristen Moulton