SALT LAKE CITY — More than half of all Utahns find health care difficult to afford, according to a new study intended to give policymakers a kick in the pants.

“Utah has relatively low health care spending per person, but ranks among the worst in the nation for the percentage of residents reporting affordability problems,” the report, compiled by Altarum Healthcare Value Hub, an organization funded by the Robert Wood Johnson Foundation, said.

“Health care affordability is the No. 1 issue that state residents on both sides of the political aisle want their policymakers to work on,” the report states.

Utah ranks 35th among 42 states surveyed in the Hub’s health care affordability study, though, the state’s scorecard indicates low-income families — and the state’s ranking — will be helped by ongoing Medicaid expansion, which extended coverage to all Utahns who earn up to 138% of the federal poverty level ($17,000 as an individual or $35,000 for a family of four) on Jan. 1.

The most commonly reported burden, by 47% of Utah adults, was having to change their prescribed medications because of the cost. Utahns also claim trouble paying medical bills, the report states.

“It is disappointing to see Utah ranked so low for health care affordability, but it comes at little surprise, as most people in our state struggle with affording health care,” said Courtney Bullard, education and collaborations director at Utah Health Policy Project.

Grid View People attend a Medicaid expansion celebration and enrollment event at the Utah Health Policy Project in West Valley City on Wednesday, Jan. 15, 2020. Laura Seitz, Deseret News

Wessly Berry, of Murray, cuts a cake after enrolling in a Medicaid plan during a Medicaid expansion celebration and enrollment event at the Utah Health Policy Project in West Valley City on Wednesday, Jan. 15, 2020. Laura Seitz, Deseret News

A cake is pictured at a Medicaid expansion celebration and enrollment event at the Utah Health Policy Project office in West Valley City on Wednesday, Jan. 15, 2020. Laura Seitz, Deseret News

Pro-Medicaid expansion sentiments are displayed at a Medicaid expansion celebration and enrollment event at the Utah Health Policy Project in West Valley City on Wednesday, Jan. 15, 2020. Laura Seitz, Deseret News

In 2018, health care spending in Utah totaled $5,289 per person, but spending has grown 18.6% in the past five years.

“While spending per person is comparatively low compared to other states, residents are struggling to afford needed health care,” the report states.

When Jen Hepworth’s daughter, Penny, now 6, was diagnosed with cystic fibrosis at 3 weeks old, the family knew they’d face expensive treatments and numerous costly medications throughout her life — not just to keep her healthy, but to keep her alive.

“This is an expensive disease,” Hepworth said, adding that one of Penny’s drugs costs about $250,000 a year.

Thankfully, though, the Hepworths, of Layton, have health insurance through a stable employer, but even still, they struggle.

“We live paycheck to paycheck because we need special foods to help her maintain her weight ... and we have to make hard choices and not go on family vacations to make sure we have our deductible ready for the next year,” Hepworth said.

The family, and others they know that are facing similar situations with the rare genetic disease, will likely be in medical debt in perpetuity.

Utah’s low ranking in the report results from a combination of factors.

More and more people are purchasing high-deductible plans through their employers — because the underlying cost for these is less, though unanticipated medical needs could arise and end up costing more out of pocket. The report also contends that Utah policymakers have failed to combat low-value care by putting safety protections in place for patients.

Another thing, the state, according to the report, has “failed to expand Medicaid for so long.”

Uninsured Utahns have been asking for full expansion for at least seven years. Prospective policies have bounced around the Legislature, with few ending up sticking. Utah voters then took it upon themselves and voted for expansion. Lawmakers believed the cost wasn’t sustainable and came up with a phased plan to implement partial expansion based on the approval of a series of waivers last year. When some of those were rejected, state leaders set the course for full expansion.

“Too many of our clients have been waiting too long,” Maria Guadarrama, community relations director at Take Care Utah, said in December when full expansion was announced in Utah. Take Care Utah, a network of nonprofit organizations focused on helping people with health insurance, is working with Utah Health Policy Project and others to enroll the nearly 60,000 Utahns who are now eligible for Medicaid coverage.

Still, the report states, “Utah has much work to do to ensure wise health spending and affordability for its residents.”

The Hub report recommends that Utah lawmakers consider supplementary premium subsidies and other options to help families that make too much to qualify for Medicaid. It also advises finding ways to lower the cost of high-value health care, eliminating unnecessary care and helping to curtail the overprescribing of antibiotics. Ninety-six percent of Utah hospitals have already adopted the United States Centers for Disease Control and Prevention’s Core Elements of antibiotic stewardship.

“There is a lot that can be done to help this issue, and we hope that health care affordability is top of mind for policymakers during the upcoming legislative session,” Bullard said.

Already, slightly more Utahns this year have opted for insurance coverage through the federal marketplace, which provides premium subsidies to families that qualify.

While Penny is living a mostly normal life with the help of expensive medications, others with cystic fibrosis or other life-altering diseases are going without because of the cost.

“If you don’t have access to medications like this, your life looks a lot different than when you can afford it,” Hepworth said. “If we couldn’t get this medication, I don’t know what we would do. It has made it so she can have a life that is not just staying alive, but that she can be a 6-year-old kid and do what kids do.”