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Bill to give terminally ill patients 'right to try' investigational drugs, devices passes House

Terminally ill patients in Utah could access treatments and medical devices that do not have full federal regulatory approval under a bill overwhelmingly approved by the Utah House of Representatives on Thursday afternoon.
Terminally ill patients in Utah could access treatments and medical devices that do not have full federal regulatory approval under a bill overwhelmingly approved by the Utah House of Representatives on Thursday afternoon.
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SALT LAKE CITY — Terminally ill patients in Utah could access treatments and medical devices that do not have full federal regulatory approval under a bill overwhelmingly approved by the Utah House of Representatives on Thursday afternoon.

The House voted 72-1 to approve a substituted version of HB94, which would allow terminally ill Utahns who have exhausted traditional treatments to try drugs and medical devices that have not received full Food and Drug Administration approval.

During debate of the bill, its sponsor, Rep. Gage Froerer, R-Huntsville, urged House members to allow terminally Utahns who want to try investigational treatments to undergo treatment in their home state instead of having to travel out of the country.

Similar bills passed by or under consideration by state legislatures in other states have been dubbed "right to try" measures, Froerer said.

"In my opinion, it's better called the 'right to life' bill," he said.

Lawmakers who spoke in favor of the bill shared personal stories of loved ones who were robbed of hope and dignity when physicians told them there were no other treatments.

Rep. Eric Hutchings, R-Kearns, said his mother, who had bone marrow cancer, spent the last 14 months of her life in a hospital bed at home. His father quit his job to take care of her.

While Hutchings' mother knew what she was facing, "she would have reveled in being potentially able to help someone else."

House Democratic Whip Rebecca Chavez-Houck, D-Salt Lake City, in a statement, said HB94 struck a balance between patients' rights of self-determination and safety.

"There are many patients who pass away and families left wondering if tragic outcomes might have been otherwise avoided, or time extended, had they been able to access these investigational drugs and devices,” Chavez-Houck said.

Under the legislation, insurance companies could deny coverage of the costs of the drugs or devices. The bill also holds harmless health care providers who treat patients with investigational drugs or devices from civil, criminal or license sanctions.

Quoting the Declaration of Independence, Froerer said he particularly relishes its description of Americans' unalienable rights: life, liberty and the pursuit of happiness.

"I ask you today to do the right thing. Let’s protect those rights and give our citizens the ability to make those decisions," he said.

The bill moves to the Senate for its consideration.

Email: marjorie@deseretnews.com