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Terminally ill Utahns may soon be able to try drugs and medical devices not yet approved by the Food and Drug Administration.
A legislative committee gave early approval Monday to a measure allowing patients who have exhausted traditional treatments to sidestep the FDA's approval process.
"It takes the red tape out," HB94 sponsor Rep. Gage Froerer, R-Huntsville, said. The measure, he says, puts the decision of whether to try an experimental drug where it belongs: with the patients, physicians and pharmaceutical companies working on such drugs.
The bill passed unanimously through the House Health and Human Services committee.
"Right to try" laws were passed by legislatures and voters in five states last year, including neighboring Arizona and Colorado. Such bills are under consideration in about two dozen other states.
The Utah Medical Association supports the bill, but some lawmakers on the committee have expressed skepticism in recent weeks.
Some critics, including Rep. Ray Ward, R-Bountiful, who is a family physician, have questioned who would foot the medical bills if the treatment fails or further sickens patients.
Rep. Mike Kennedy, R-Alpine, also a physician, believes taxpayers would ultimately end up paying. "Either the words need to change, or we need to understand we're going to pay as a state," he said in the panel's discussion last week.
The Goldwater Institute, a conservative think tank in Phoenix, is promoting the initiatives to "protect the fundamental right of people to try to save their own lives."
The Utah measure allows the patient's insurance company to refuse to pay if complications stem from the experimental medication.
Froerer notes that under the bill, patients would have to acknowledge they are on the hook for such medical expenses by signing an "informed consent" form.
Insurers would only decline if the new medical conditions were caused by the experimental drug, said Kelly Atkinson, executive director of the Utah Health Insurance Association.
The panel amended the bill Monday to stipulate that insurers would still cover pre-existing conditions and hospice care for patients trying experimental treatments.
Christina Casanova's 7-year-old son, Bertrand Might, has a rare genetic disorder that cut off his brain's development when he was six months old. She cheered the panel's approval Monday at the Capitol.
Only a few dozen children nationwide share Bertrand's diagnosis of having two different mutations in the same gene, NGLY1, which regulates production of an enzyme critical to building the brain and nervous system.
A pharmaceutical company has tested a treatment that has been shown to cease symptoms of the disorder with no side effects, Casanova said, but has not yet received federal approval.
"It's huge," she said. "It gets us one step closer to having this potential treatment for our son."
The bill now goes to the full House for consideration.