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Utahns with chronic diseases say they want Affordable Care Act to stay

U.S. Supreme Court hears oral arguments in legal fight over Obamacare as advocates urge Utahns to enroll

Sadie Hepworth, left, and her sister Penny swing in the backyard of their home in Layton as their parents, Jen and John Hepworth, watch on Tuesday, Nov. 10, 2020.
Sadie Hepworth, left, and her sister Penny swing in the backyard of their home in Layton as their parents, Jen and John Hepworth, watch on Tuesday, Nov. 10, 2020.
Steve Griffin, Deseret News

SALT LAKE CITY — After rent and groceries, bank teller Jenny Carmody Livingston found she couldn’t afford the medication that helped treat her debilitating lung infections.

Out-of-pocket costs tied to diabetes forced social worker Tamara Maust to file for bankruptcy.

After her brain surgery but before her breast cancer diagnosis, attorney Marian Furst’s Colorado-based insurance company called to cut off her coverage with no real explanation.

That was more than a decade ago. But the three women were among several Utahns with long-term illness who said Tuesday they fear a return to those sorts of circumstances.

It could become a reality if the U.S. Supreme Court throws out the Affordable Care Act, they said at a news conference hosted by health care advocates. Some in the group said the law boosted their health and finances so much that they could get degrees and work full time, endeavors they couldn’t manage before.

“I need these medications,” Livingston said, estimating that she may not survive even two months without the drugs that keep her cystic fibrosis at bay. “And I need access to health care in order to stay alive. It’s not optional.”

The nation’s high court heard arguments Tuesday in the latest challenge to former President Barack Obama’s signature health care law. Utah is among the conservative states that have joined President Donald Trump’s administration in arguing the law as a whole is unconstitutional after Congress removed a penalty for those remaining uninsured.

Organizers with the nonprofit Utah Health Policy Project say roughly 260,000 people in the Beehive State and more than 20 million nationally will lose their coverage if the law is overturned.

Texas is leading a coalition of 20 states, including Utah, in the effort to invalidate it.

Utah Attorney General Sean Reyes has called the law “an impermissible overreach of federal authority.” He intervened in the case two years ago via a friend-of-the-court brief.

Obamacare prohibits insurers from charging people more money or denying them an individual policy because of their medical history. It also allows parents to keep children on their health plans until the age of 26.

Jen Hepworth was 21 when doctors diagnosed her with a painful autoimmune disease affecting her joints, she said. By then, the provision allowing her to remain on her parents’ plan for five more years had already taken effect. The longer timetable meant she could get expensive treatments to prevent her spine from fusing.

Hepworth’s 7-year-old daughter, Penny, has cystic fibrosis, the same hereditary disease that has hospitalized Livingston for weeks at a time. There is no known cure for the disorder.

John Hepworth, back left, and his wife, Jen, back right, pose for a photo with daughters Sadie, front left, and Penny, front right, in the backyard of their home in Layton on Tuesday, Nov. 10, 2020.
John Hepworth, back left, and his wife, Jen, back right, pose for a photo with daughters Sadie, front left, and Penny, front right, in the backyard of their home in Layton on Tuesday, Nov. 10, 2020.
Steve Griffin, Deseret News

Recent advancements in treatment mean Penny can play just like other children her age. But without the subsidized health coverage, the family could not afford her regular visits to Primary Children’s Hospital about four times a year, or the expensive medications, Hepworth said.

“Because I don’t really know a time before the ACA, I am terrified for a reversal, what that would mean for my daughter, and what that would mean for her life,” she said.

About 200,000 in Utah have private coverage purchased through taxpayer-subsidized private market HealthCare.gov, said Stacy Stanford, a health policy analyst with the group.

And more than 60,000 are covered through the health law’s Medicaid expansion program, she said, including many essential workers or others who have lost their jobs because of the pandemic.

“In order to protect our public health, and protect our economy, we really need the ACA to be protected or expanded,” Stanford said. “We really want to emphasize that the risk is real.”

However, Stanford and her colleagues note the law has survived prior legal challenges. They are encouraging people to sign up for the health care program before the open enrollment period ends Dec. 15, and to get in touch for help in doing so online at takecareutah.org/bookings or by calling 801-433-2299.