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If Overstock.com chairman Jonathan Johnson ever was diagnosed with with a terminal illness, he would do everything possible to extend his life and the time he could spend with his family.
And for Johnson, also chairman of the libertarian Promote Liberty Political Action Committee, that might include using drugs and medical devices that are not yet approved by the Food and Drug Administration.
"Medical decisions, particularly those of terminally ill patients, should be made by the patients and their doctors," he said. "Not Washington bureaucrats and the FDA."
Sidestepping the FDA's approval process may soon become a reality for terminally ill Utahns.
On Tuesday, a group of lawmakers announced their support for a so-called "Right To Try" bill that would make it legal to obtain and use experimental drugs and medical devices when traditional treatment options have been exhausted.
"It puts the decision-making process in the hands of the patient, the family and the provider, where it really should be," said Sen. Evan Vickers, R-Cedar City. "In those dire circumstances, when a patient has no other alternative, it gives them the opportunity to have access to a potential treatment that can save their life."
The draft bill, HB94, would allow patients, in partnership with their doctors, to approach drug companies directly and request treatments that have passed one phase of the FDA's three-phase approval process.
Huntsville Republican Rep. Gage Froerer, the bill's sponsor, said that in order to pass phase one, a treatment must show that it is not harmful.
The FDA allows terminally-ill patients to apply for use of unnaproved drugs. But Froerer said that application process can take months and final drug approval can take several years.
"What HB94 attempts to do is cut the red tape," he said.
In the last year, five states have passed "Right To Try" laws, including Colorado, Arizona, Michigan, Missouri and Arizona.
The FDA has not taken a position on those state laws, spokeswoman Stephanie Yao said, but prefers that patients gain access to treatments through a clinical drug trial or the FDA's expanded access programs.
"While the FDA is supportive of patient access to experimental new treatments, when appropriate, we believe that the drug approval process represents the best way to assure the development of and access to safe and effective new medicines for all patients," Yao said.
Froerer said the bill shares components with a bill he sponsored last year known as "Charlie's Law," which made it legal for those with epilepsy to obtain and use cannabis oil as a treatment. That bill generated significant debate in the Legislature, but ultimately passed and went into effect July 1. Some of the first Utah patients have started getting treatment at the University of Utah.
Froerer said he's received positive feedback on HB94 from pharmaceutical companies and fellow lawmakers and he anticipates a similar outcome during the upcoming session.
"I'm optimistic that we'll pass this legislation with overwhelming support of both houses," he said.
When asked whether his bill was a precursor to so-called "Right To Die" legislation, Froerer said it was not his intention to start a natural progression to legal doctor-assisted suicde.
But he added that he would not necessarily be opposed to future bills that grant a person the right to end their life.
"I never support any bills until I see what they are in writing," he said. "But the concept, in my opinion, probably makes sense depending on what the requirements and limitations are."