Health Care on the Line: What Americans will do for health insurance

Editors’ Note: As the case against Affordable Care Act goes before the U.S. Supreme Court this week, the Center for Health Journalism is sharing a series of stories about the impacts of this transformative law.

Marcia Szymanel was sexually and physically abused as a child. At 19, she married a man she would later describe as abusive. She stayed married to him for 30 years, though they were separated for a decade, for one main reason: She needed his health insurance.

Before the Affordable Care Act, it was almost impossible to get health insurance except through an employer-based plan and Szymanel’s various jobs did not provide that benefit. She suffered from severe depression, anxiety and post-traumatic stress disorder. Her husband’s insurance, which she considered a Cadillac plan, did not cover outpatient mental health care. But it did cover hospitalization, so that’s where she wound up repeatedly, once for what she called "a nervous breakdown,” and later after two suicide attempts.

“I spent four months in a psych hospital because we knew if I came home, I would not have any coverage,” Szymanel said. “And I was very sick.”

Even with insurance, she ran up $20,000 in out-of-pocket costs for her hospital stays, trips to the emergency room after she attempted suicide, and other care. The couple's house went into foreclosure and they eventually declared bankruptcy.

She finally got insurance through work, divorced her husband and remarried. She eventually switched to her second husband’s health plan, although that's not why she has stayed happily married for nearly 20 years.

Before the ACA

Sticking with a marriage just to keep health insurance may sound extreme, but before the ACA, most people without job-based insurance had few if any options.

Individual insurance could be prohibitively expensive — if it was available at all. Insurers could decline coverage for people with pre-existing conditions or refuse to cover treatment for those conditions. They could charge women higher premiums and exclude services such as maternity or mental health treatment.

In 1991, the year Szymanel separated from her first husband, nearly 35 million Americans were uninsured. By 2010, when the ACA was signed into law, that number had grown to 46.5 million, or nearly 18% of the population.

The ACA made health insurance significantly more accessible by creating online marketplaces for easier comparison shopping, requiring comprehensive coverage, subsidizing coverage for people earning up to $50,000 per year, and prohibiting insurers from discriminating against consumers or denying coverage for pre-existing conditions.

More than 11 million people now buy insurance on a health insurance marketplace, and 12 million more have gotten coverage through Medicaid expansion. The uninsured rate dropped to a low of 10% in 2016 before creeping up to 10.9% in 2019.

Millions more benefit from the law’s consumer protections.

But if the ACA eased barriers for people seeking health insurance, it did not eliminate them. ACA plans can be unaffordable for people who earn too much to get subsidies and too little to easily pay full price. On top of premiums, high out-of-pocket costs can make insurance feel pointless.

ACA plans can also offer limited choices if not enough providers participate.

Facing these limitations, many Americans still take drastic measures to get health insurance.

Uprooting for health insurance

When Brooke Knisely suffered a traumatic brain injury in 2015, at age 25, she was lucky to have her parents’ military health insurance. About 2.3 million young adults gained coverage because the ACA allowed them to remain on their parents’ plans. Knisely had the law to thank for generous health benefits during the acute phase of her recovery.

She had fallen roughly 25 feet out of a redwood tree at the University of California Santa Cruz, where she had one class left before she could graduate.

Knisely spent 10 days in a coma, a month and a half in the hospital, and five months in outpatient therapy. Nine months after her fall, she had eye surgery. A week later, she turned 26 — the cutoff age for young adult coverage on a parent’s plan. She lost her health insurance, though she still had dire needs.

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“I was still very brain damaged,” Knisely said. “I had all kinds of things wrong with me.”

She rushed to sign up for an Obamacare plan, which covered only basic necessities. She didn’t seek mental health care on that plan, and never got off the waitlist to see a neurologist.

A doctor at the clinic she visited expressed concern about the complexity of her needs relative to the coverage she had.

“You need better insurance,” the doctor told her, an assessment Knisely found “vaguely alarming.”

The instructor of Knisely’s final college course offered her a tip. “If you enroll in grad school, you can get health insurance.” And so, to get coverage, she enrolled in a graduate program, took out student loans and moved across the country.

If she’d had the option, she might have stayed home to focus on recovery. 

Coming off the bench

Keith Lampman-Perlman came out of retirement for health insurance.

A former fundraising executive, Lampman-Perlman retired with his husband in 2018 at age 51 and 57, respectively. They sold their 4,800 square-foot home in Pennsylvania and moved to a one-bedroom condominium by the sea in Provincetown, Massachusetts.

They also bought health insurance through the marketplace. Their plan cost $1,100 a month, with a $7,500 deductible.

One evening in October 2019, while attending a gala fundraiser for a local art museum, Lampman-Perlman’s husband experienced chest pain. Because he’d previously had a serious heart problem, they took an ambulance to Cape Cod Hospital, about an hour away.

His husband turned out to be fine, but after a night in the hospital for observation, the couple met their deductible. They began thinking about how those costs could add up year after year on top of their monthly premiums.

“That’s a big chunk of change for anybody,” Lampman-Perlman said.

Lampman-Perlman switched to a lower-deductible plan that cost more each month. And though he says he was “the happiest retired person,” he started looking for a job with health benefits so he wouldn't have to keep paying on his own.

Now the general manager of the 81-unit condominium complex where he lives, he loves his job — and the corporate health insurance.

Watching Washington

Despite the ACA’s limitations, Knisely and Lampman-Perlman were lucky to have options at all.

Without the ACA, Knisely might have faced astronomical bills for her life-saving care, or never gotten eye surgery or physical therapy. Lampman-Perlman might have spent the rest of his life paying his husband’s full hospital bill, and they may not have been able to retire early at all.

“Only in America do two 50-somethings look very much forward to becoming 65 years old to be covered under Medicare,” Lampman-Perlman said.

Lowering the age of Medicare eligibility could ease burdens for millions of people who will still face drastic life choices even if the Supreme Court upholds all or part of the ACA.

Congress could also extend subsidies to more middle-income people, cap deductibles and out-of-pocket costs at more manageable levels, and create incentives for health care providers to accept marketplace insurance, which would expand access to care.

Reforms like these would be costly, requiring lawmakers to choose to prioritize funding for health coverage over other areas. That seems only fair to consumers who have long been making difficult choices just to get the health care they need.