Story published: November 2, 2020

Kelly Leibold lives in an $800-a-month apartment over the Old Pine Theater in Pine Island, Minnesota. It’s more affordable than if she lived in nearby Rochester, Minn., and for this 24-year-old who lives on income from her 10-hour-a-week job at the local chamber of commerce and other side gigs, costs factored into her decision to return to her hometown of 3,500 people. Another consideration was the fact that she had emergency brain surgery five years ago to remove a cancerous tumor.  

“A CT scan found a six-centimeter mass in the back right side of my head. That CT scan was [on] a Tuesday, and I was in emergency brain surgery on a Thursday,” Leibold remembered. “It was so frustrating to start your life and have it all ripped away.”

The cancer caused her to put her job on hold at a Staples copy center. She had to move back in with her parents while getting chemotherapy at the Mayo Clinic.

“So six months in, I was in the thick of my chemo treatments and [Staples] basically revoked the policy and, in the middle of everything going on, I had to figure out who was going to cover me,” she said.

The surgery removed a part of the brain that affects balance. Leibold was no longer able to work a full-time retail job where standing on one’s feet was required. After not being able to return to work, she lost her job and her health insurance. Fortunately, she was able to qualify for expanded Medicaid insurance through the Affordable Care Act. She continued her post-operation treatments and was able to put back pieces of a life that she could feel good about. Today she is on her community’s city council and works as the lead person for Pine Island’s chamber of commerce.

“I’m still contributing and not leaching off the system, [but] if I’m not deemed productive enough, I can’t have access to health insurance,” she said.

On November 10, the US Supreme Court is set to hear a case questioning the constitutionality of the ACA. Supporters of the 10-year healthcare law are worried what that decision could mean for the future of the ACA.

“If the entire ACA is rolled back by the Supreme Court, it would have huge implications for Minnesota,” said Ezra Golberstein, associate professor of health policy management at the University of Minnesota School of Public Health.

The most recent estimates of the number of uninsured if the law were to be completely rolled back are double current numbers, from 300,000 to 600,000 people in the state, said Golberstein.

Another popular provision would go, too. The ACA currently protects people from getting denied coverage if they have a pre-existing condition. For someone like 24-year-old Kelly Leibold, getting cancer as a teenager means she will always carry that condition.

“When I think what it means to Minnesotans, I think about cancer survivors who no longer are denied coverage because of living with cancer or their coverage doesn’t cost more because they survived breast cancer. So to think we’ll go back to a time when they’re denied coverage or it costs more because they’ve survived a disease like cancer is alarming,” said Emily Myatt, legislative lobbyist with the American Cancer Society Action Network.

Mental health experts are also fearing the outcome of the case. The ACA ensured that individual market plans had to provide parity of coverage for mental health. And that people wouldn’t have to report their need for mental health care as a disability just to get treatment.

“Medicaid expansion meant they didn’t have to do that, and work is actually therapeutic, getting up in the morning and going to work is therapeutic. People could get the treatment they needed without saying they’re disabled,” said Sue Abderholden, executive director of NAMI Minnesota.

She estimates that more than 50,000 Minnesotans currently receive mental health services. A study showed that, before the ACA, 38% of individual market plans excluded any coverage for mental health care, and 45% for substance abuse disorders. And even for plans that included mental health coverage, there were often lifetime limits.

“What we know during the pandemic is that more people are struggling with depression, anxiety and substance abuse, and to think we’d lose parity and mandated coverage is not what we want to see,” Abderholden said.

President Donald Trump has opposed the ACA, but has also said protections for pre-existing conditions would remain. But his plan to replace the ACA is not clear.

“I don’t think you ignore the politics of this,” Golberstain said. “The most important part of the ACA was the Medicaid expansion. States had a choice to expand Medicaid public insurance for people with lower incomes up to 130% of the federal poverty line. Most blue states immediately adopted it, most red states did not,” he said.

But in recent years, some red states have put it to voters through ballot initiatives. Voters in Utah, Nebraska and Idaho have all approved these expansions. Golberstein said it’s clear that parts of the ACA are popular, even in conservative districts. And while a complete rollback is unlikely, he said that any modification to the law is sure to have a far-reaching impact.

“Depending on what part of the law you’re talking about, the ACA touches on all these things. It could have a range of different consequences,” he said.

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In 2014. Dr. Ayaz Virji gave up a lucrative career in Pennsylvania and moved his family to rural Dawson, Minn., to run the local hospital. But once the 2016 election was decided, he noticed a different tone coming from his neighbors: As the only Muslim family in town, Dr. Virji, his wife and their children found themselves constantly defending Islam and Muslim Americans. One Greater Minnesota Reporter Kaomi Goetz has chronicled Dr. Virji’s story since 2018, starting with Muslim Doctor Finds Purpose and Pushback in Rural Town.

Continue reading about Dr. Virji’s journey in What’s It Like for a Muslim Doctor Living in Rural Minnesota? and Why This Muslim Doctor Is Taking a Break from Rural America.