Between 2007 and 2012, Griffin Bonacci was injured in a pair of accidents that left him with five fractured disks in his back and neck and severe nerve damage throughout his body.

The Magna resident was nearly paralyzed from the neck down, he said, and he has undergone 14 surgeries to maintain function in his arms and hands.

“Nothing, still, works very well,” Bonacci said.

Forced to sell his business, and facing the costs of health care specialists and medications, Bonacci said he spent several years with either very little medical care or none at all. He was ultimately enrolled in Utah’s Primary Care Network, a limited state-sponsored health care plan, and moved with other PCN patients into Medicaid under a partial expansion of the program enacted by lawmakers this year.

But last month, Bonacci said, he called 911 after struggling to breathe, and was told he was at risk of heart failure.

“I simply couldn’t afford any more medical bills,” Bonacci said. “In the long run I now have much, much worse health issues all because the lawmakers have stalled the [Medicaid] expansion.”

Bonacci shared his story with a group of roughly 40 people who had gathered in the rotunda of Utah’s state Capitol on Thursday to urge state leaders to move quickly and fully expand Medicaid.

On Saturday, Gov. Gary Herbert and legislative leaders confirmed that they had been told by the Trump administration that the next phase of Utah’s partial expansion — seeking enhanced federal funding for a smaller population of patients than the Affordable Care Act mandates — would be rejected.

Utah voters in 2018 approved the full expansion with Proposition 3. But lawmakers, citing the potential for runaway costs, repealed the initiative and adopted their own, more restrictive plan, SB96, which seeks a series of waivers from the federal government to adopt spending and enrollment caps and impose work requirements on Medicaid beneficiaries.

Fallback provisions in SB96 will automatically trigger a full expansion of Medicaid beginning in January if the state’s waiver requests are denied. But on Wednesday, Herbert released a statement indicating that the state intends to continue with its waiver request, despite the preemptive rejection of enhanced federal funding, in order to receive feedback from the Centers for Medicare and Medicaid Services (CMS) on the restrictive aspects of Utah’s plans.

“A written response from CMS will help the state determine where the administration stands on these other elements and can help guide the creation of future waiver requests,” Herbert wrote.

Stacy Stanford, a policy analyst with the Utah Health Policy Project, said that if state leaders insist on working to impose restrictions on Medicaid beneficiaries, they should do so after expanding Medicaid to include the full patient population, or any Utahn earning less than 138% of the federal poverty level.

“If they want to pursue this losing battle of horrible caps and red tape, they can do that on the side,” she said, “they can do that later.”

She said she personally knows a half-dozen patients who have died while waiting for Utah to expand Medicaid, and the state should not wait one more day to offer health care to low-income residents.

“We are losing our neighbors,” Stanford said. “We are losing our friends and we don’t need to.”

Paul Gibbs, a health care activist who last month testified before a congressional committee on the benefits of the Affordable Care Act, said his two sons would not be alive today if he had not had access to a kidney transplant through Medicaid.

He compared SB96 to a basketball player who had fouled out of game, requiring a teammate to take their place on the court.

“SB96 was a terrible deal for the people of Utah,” he said. “And it turns out, last week, that SB96 did exactly what most of us health care advocates thought. It bombed with the federal government.”

Gibbs said Utah should proceed by expanding Medicaid now, echoing Stanford’s comments that the fight over caps and waivers can wait for another day.

“We keep seeing a refusal to accept [that] this is time-sensitive,” he said. “People are suffering and people are dying.”