Affordable Care Act Struggles Continue: Sarah’s Health Care Story

Sarah is a social service worker from Lawrence County, Pennsylvania, where she and her husband also homeschool their four young children. For four years her family received insurance through Medicaid. Now she purchases coverage on the Affordable Care Act (ACA) exchange. Sarah summarized their health care options with one word: irrational.

This week a Texas court ruled the ACA unconstitutional and 2019 enrollment for the exchange ended with preliminary enrollment at just 163,000—a 20 percent decrease from 2018. On the other hand, Medicaid enrollment remains near record highs with about 700,000 adults receiving coverage through the ACA’s Medicaid expansion. Sarah used to be one of those adults, and her experience demonstrates how the comprehensive program looks good on paper, but often fails families in practice.

When Sarah’s family first enrolled in Medicaid they were unusually lucky to keep their doctor because of a personal relationship. Surveys indicate that only two of three Pennsylvania doctors accept new Medicaid patients, a problem mirrored nationally where 31 percent of new Medicaid patient requests for care were denied in 2015.

Although her family physician treated Sarah’s family with respect, the program did not. “I was made to feel like a second-class citizen,” she told me. Sarah described constant calls in the middle of her work day to see if she helped her kids brush their teeth or pushing long surveys about her family hygiene practices.

I tried to explain to them that I am at work, but they just ignore you. Should my boss just give me a 15-minute break whenever a state bureaucrat calls? Health education is important, but there has to be a better way to do it.

Sarah is the first to admit that the coverage under Medicaid is extensive and she appreciates that, but she worries that doesn’t do families much good when they can’t find someone willing to provide health care services when they need them.

The lack of respect continued at her family dentist. For a cavity, they had to schedule three appointments: one checkup, one to “confirm” the cavity, and another to fill it. “We do it this way to maximize billing,” the secretary told Sarah.

“Let’s hope none of us ever has a bad toothache,” Sarah remarked, frustrated.

Now Sarah understands why so many Medicaid recipients simply crowd emergency rooms for everything from colds to ear infections. Recent studies from California and Arizona show that after Medicaid expansion, non-emergency ER use increased. That’s the exact opposite of what expansion proponents promised.

Convenience is one thing, but not having coverage when you need it unnecessarily stressful. At one point, the Medicaid bureaucracy left Sarah wondering if she would be on the hook for an expensive surgery. After weeks of pain Sarah received knee surgery, but her follow-up appointments were scheduled for the next calendar year. Sarah was still waiting to confirm her Medicaid eligibility for that year, leaving her doctor in an awkward position. They weren’t sure if they could continue to offer her the follow-up care she needed.

Exasperated, she offered to pay out-of-pocket. The shocking response: “That’s illegal in Pennsylvania.”

Illegal to pay, with your own money, for a necessary doctor appointment?

Sarah left Medicaid’s broken system when a raise pushed their income above the eligibility threshold. But now, her family must purchase an exchange plan for $400 a month, which always stretches their budget.

The law says we have to have health insurance, but there are no affordable ways to get it. It’s immoral.

Sarah believes the solution is patient accountability. “Co-pays are what we need. People would use health care more responsibly if we had to pay each time. But we’re not required or even allowed to.”

Sarah is bewildered when she thinks about her experience.

I work in this field and yet I didn’t understand what was going on or how to fix something. If I can’t figure it out, how many young moms and other families are falling through the cracks?

Giving more Pennsylvanians an insurance card is not enough. Sarah’s story attests that fundamental Medicaid reform, including work requirements and co-pays, is essential to create an affordable and accessible health care system for all Pennsylvanians.