Two Republican members of the Utah House of Representatives disagreed on the status of the aggressiveness of a bill. But their reasons for their disagreements led them to vote with other Utah House committee members in advanced the legislation, first substitute of House Bill 435. It would mandate that the state’s Medicaid program and Public Employees’ Benefit and Insurance Program cover exome sequence testing, which purpose is to “try to find a genetic cause of your or your child’s signs and symptoms,” according to Cincinnati Children’s Division of Human Genetics Diagnostic Laboratories. The issue was featured in a Sundance Film Festival production, which played in committee late Monday afternoon.

Utah Rep. Paul Ray (R-Clearfield) wanted the legislation to be more aggressive; Utah Rep. Ray Ward (R-Bountiful) was glad it wasn’t.

The House sponsor of 1HB435 is Rep. Steve Eliason (R-Sandy), said, “though it doesn’t cover as many people, as many children, as I would like, at least it gives us a start.”

Eliason’s daughter is one of just 200 folks in the world with a condition like theirs.

Eliason said he visited with Chad Loftis, managing director of PEHP Health & Benefits, about the bill.

“He said it was a no-brainer,” Eliason reported. “We are going to cover the cost of this testing.”

At least 10 children have been denied treatment under Medicaid, Eliason said.

Eliason has learned new things in a Facebook group about the condition his daughter experiences, he said.

“It like the Rosetta Stone,” Eliason said. “We now know and can take care of her much more effectively in the long term.”

“I see that you have doubled won that this is absolutely the last resort,” Rep. Norm Thurston (R-Provo) said.

“It’s only after everything else has failed,” Eliason said.

Thurston then asked about the tests regarding them being “medically necessary” about about having “a doctor to sign off.”

“It’s a high standard, but yes,” Eliason said.

“Are the tests we are talking about FDA-approved?” Ward asked.

“It’s very accepted and routine,” Eliason said. “They only look at the codes for protein development.”

“The substitute carves out all other insurers and it only applies now to Medicaid and (PEBIP).”

Eliason said he and his family used to call his daughter “our beautiful mystery” but now call her “beautiful angel because the problem has been solved.”

Kelly Atkinson, executive director of the Utah Health Insurance Association, testified, thanking Eliason for the bill. However, she said that the organization “can’t make any commitment.”

“I wish you could,” Ray said to “oh no he didn’t!” laughs from dozens in the audience.

Atkinson later said, “Who could watch that film and not be impacted?”

“The insurance companies,” Ray said to more laughs.

“First substitute” means the bill had been switched out.

— -

For more articles like this, please support Beehive Blunders at the Hero’s Journey Content Patreon page.