‘Right to try’ bill passes Utah senate, former speaker Lockhart remembered

Friends and family embrace after former Utah Speaker of the House Becky Lockhart’s memorial service. Lockhart was diagnosed with Creutzfeldt-Jakob’s disease 10 days before she died. (Bryan Pearson)

By John Weylin Gibbons

Utah’s “Right to Try” bill, which would allow terminally ill patients to participate in experimental treatments prior to final FDA approval, is in its final stages before becoming law. The bill passed the Senate 26 to 0, with three members absent.

The “Right to Try” bill, HB94, gives patients decision-making power over their own treatments, according to Rep. Gage Froerer, R-Huntsville. The bill also allows a patient’s doctor and pharmaceutical company to make a decision that otherwise would have been impossible.

In last week’s Senate Health and Human Services Committee meeting, Jonathan Johnson, chair of the Promote Liberty political action committee, testified in support of the bill’s passage. “Last year I heard about when this law passed in Colorado. I thought about my father, who was diagnosed with leukemia,” Johnson said. “Father was willing to try an experimental drug to help further society. ‘It’s too much work,’ is what the doctor said. It was too much work for the doctor, not for my father.”

It is currently illegal to receive drugs that have not passed FDA testing, but this law would allow the option and give pharmaceutical companies the choice to refuse. Froerer said this law has three stop-gap measures: The patient decides whether to accept the treatment, the doctor is in charge of prescribing and the manufacturer has the option to give or withhold consent.

Sen. Evan J. Vickers, R-Cedar City, is the floor sponsor for the bill in the Senate. “This bill has been on a journey. Any time you get on a fifth substitute you know that you’ve dealt with a lot of concerns, and that’s the path that we’ve taken on this bill, to try to address all of those concerns,” he said. Given the changes and compromises, Vickers is confident the legislature has created a sound bill.

Sen. Curt Bramble, R-Provo, decided to discuss the bill in a context a little closer to home for most legislators. Shortly before the 2015 session began, former Speaker of the House Becky Lockhart was diagnosed with Creutzfeldt-Jakob’s disease. She died 10 days after her diagnosis.

“Imagine that you have been told that there is no cure, it is untreatable and that it’s always fatal,” Bramble said about Lockhart. “If there was any hope that there was an experimental cure, her husband, her family, we would have jumped on that in a heartbeat, because the alternative was a certainty.”

HB94 has been placed on the legislative concurrence calendar and is awaiting final approval before being submitted to the governor.

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