SALT LAKE CITY — A handful of Utah lawmakers on Tuesday unveiled a proposal that would make Utah the latest state to let terminally ill patients obtain experimental drugs that have not been federally approved.
So-called “Right to Try” legislation has been pushed by those who say the U.S. Food and Drug Administration’s approval process takes too long.
Huntsville Republican Rep. Gage Froerer held a press conference at Utah’s Capitol to announce the bill he’ll sponsor in the upcoming legislative session.
Not all patients can qualify for experimental drug trials through the FDA, and this will allow patients and doctors to cut through red tape, Froerer said.
“It gives hope,” Froerer said. “It gives the opportunity for patients and doctors to make decisions based upon what’s best for their patients.”
The Goldwater Institute, a libertarian think tank based in Arizona, is pushing the issue in Utah and other states. “Right to Try” laws have already been approved in five states: Arizona, Colorado, Louisiana, Missouri and Michigan. Lawmakers in Kansas and Wyoming are considering similar provisions this year.
Craig Handzlik from the Goldwater Institute said states that have passed the measures have not yet had patients obtain experimental drugs, but that drugmakers and doctors are in the process of working with patients in those states who have cancer or amyotrophic lateral sclerosis, known as ALS.
The Utah legislation would not require drugmakers to provide experimental drugs or doctors to pursue experimental treatments.
It states that insurance companies can cover the costs of experimental treatments but are not required to.
It’s unclear how much experimental drugs might cost patients, but the bill includes restrictions that might limit those costs. Drugmakers would only be able to charge patients for the cost of manufacturing an experimental treatment for a patient, not for the larger research or development costs involved with the drug.
Froerer’s bill stipulates that terminally ill patients can’t get an experimental drug if they have other viable treatment options. Any experimental treatment must have completed a first phase of FDA testing in which a drug is tested on a limited number of people to determine if there are frequent side effects.
The Weber County Republican said the bill does not harm anyone and comes with no guarantees; it simply gives the terminally ill patient a choice. He said some patients often seek that choice, or hope, outside the U.S.
“Rather than fly to Mexico, Taiwan or Canada, why not be able to stay here?” Froerer told the Standard-Examiner, prior to the news conference.
Overstock.com board chairman Jonathan Johnson joined lawmakers at the press conference to support the measure. Johnson said it may have helped people like his father, who was diagnosed with leukemia several years ago and didn’t want to go through repeat rounds of chemotherapy.
Rep. Eric Hutchings, R-Kearns, said the experimental drug law makes sense for Utah because the state values protecting human life and someone’s freedom to make decisions.
“When it gets down to the point where it’s all about whether or not you spend another few days on this planet, that should be your choice to make, not anybody else’s,” Hutchings said.
Connor Boyack, president of the Libertas Institute, predicted the bill will face little opposition on the Hill this coming session, which begins Jan. 26.
“We strongly believe no politician or bureaucrat should stand between the doctor and patient relationship. This bill protects that relationship and affirms their right to seek what they feel they need,” Boyack said.
Froerer said he couldn’t predict if the bill — should it become law — would pave the way for conservative Utah to eventually pass an assisted suicide law, joining a handful of states with right-to-die laws.
“Whether that’s the natural progression from here, I’m not at liberty to say,” Froerer said. “It’s not my intent with this legislation.”
When asked if he would support a right-to-die law, Froerer said he’d need to see legislation first but “the concept, in my opinion, probably makes sense, depending on what the requirements and the limitations are.”
Standard-Examiner correspondent Antone Clark and the Associated Press contributed to this report.