by Tom Joyce

 

Arizona is inching closer toward enacting new legislation allowing a patient the right to try remedies that could save their lives but not given government approval for use.

The Arizona House of Representatives passed the Right to Try for Individualized Treatments (SB1163) on Monday. The bill passed in the Arizona Senate in February, so now it will soon head to Gov. Doug Ducey’s desk for his signature. 

Typically, new medical treatments have to be approved by the Food and Drug Administration before patients can access them. Treatments made for individuals based on their genetics, however, cannot get approval from the FDA in time to cure rare illnesses, according to the Goldwater Institute, which advocated for this legislation. 

Opponents say the measure should be more of a “buyer beware” bill since experimental treatments could fail, costing the patient money with no legal recourse.

The Goldwater Institute says that, if enacted, this bill will save people from having to travel overseas for this sort of treatment – or being denied this sort of treatment and being offered no other options. 

“The right to try to save one’s own life is one of the most precious rights of all,” Victor Riches, President and CEO of the Goldwater Institute, said in a press release. “America doesn’t have to wait for the FDA to reform itself in order to put patients first. States can and should act now to protect all Americans’ fundamental right to try to save their own life.”

One of the advocates for the bill is Kendra Riley. Two of her three young daughters were diagnosed with the rare and fatal genetic brain disease Metachromatic Leukodystrophy (MLD). To get treatment for one of her children, she had to raise hundreds of thousands of dollars and go to Milan, Italy, to get the care her daughter needed.

“It brings tears to my eyes thinking of all the other special needs families out there who have always held on to hope for a chance like this. A chance at healing. A chance at a normal life—something every single one of us deserves,” Riley said in the press release.

Sen. Nancy Barto, R-Phoenix, is the original sponsor of the bill. 

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Tom Joyce is a contributor to The Center Square. 
Photo “Doug Ducey” by Gage Skidmore. CC BY-SA 2.0. Background Photo “Arizona Capitol” by Gage Skidmore. CC BY-SA 3.0.