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  • February 27, 2017 Issue
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Affordable Care Act Enrollee Stories: The Law at Work

By Brian Schilling

For the more than 20 million Americans who gained health care coverage as a result of the Affordable Care Act (ACA), now is a particularly unsettling time. Both the House and Senate have been trying to move ahead with repeal efforts, and last month President Trump issued an executive order giving the U.S. Department of Health and Human Services the authority to ease “unwarranted economic and regulatory burdens” related to the ACA. Just last Friday a draft repeal bill from the House of Representatives was leaked to the press.

If a repeal law does not include a replacement plan, it could mean more than 30 million Americans might ultimately lose insurance coverage. Repeal would also lead to significantly higher out-of-pocket health care costs for consumers and a $33 billion increase in the federal deficit, as well as the loss of an estimated 2.6 million jobs. Moreover, recent replacement proposals would likely cover fewer people and offer less comprehensive benefits than the ACA.

Despite some weaknesses in the ACA and its implementation that need attention from policymakers (detailed here by President Obama), it’s important to remember that the law did exactly what it set out to do: provide much-needed coverage to millions of people in all income, age, and racial and ethnic groups, as well as many self-employed and small business owners. A recent Commonwealth Fund report also found that millions more Americans are receiving needed health care.

These stories of these newly insured Americans are important as the fate of the ACA is discussed. Both Elena, a grad student diagnosed with the BRCA 1 mutation (who asked that we not include her last name), and Darla Volgamore, a retiree who spent nine days in a coma, say they owe their lives to the ACA. I encourage you to read their stories.

Elena

Truthfully, I was terrified about the bills I might receive. There was no pool of money I could tap into to pay a big medical bill.

Elena,
ACA Enrollee

As a healthy, 29-year-old graduate student, Elena did not put signing up for a health plan at the top her to-do list. Far more pressing were studying, scraping together living expenses, and career planning. Elena had already spent two years in the Peace Corps and was looking forward to adding a graduate degree to her resume and making her mark on the world.

But her university in New Mexico made it easy to enroll in Medicaid under the ACA’s expansion of eligibility to all adults making up to about $16,000 a year, and her parents had always insisted that you just don’t go without health insurance. So she enrolled with a “why not?” attitude and, like countless other students no longer eligible for their parents’ health plans, became a Medicaid beneficiary.

Several months later that casual decision took on enormous significance. One morning Elena work up slightly dizzy from a disturbing night’s sleep and with a deep bruise on her face that she couldn’t explain.

Elena “was worried something was seriously wrong”—but she also had little idea what care would be covered and how much she might have to pay out of pocket for care. “Truthfully, I was terrified about the bills I might receive. There was no pool of money I could tap into to pay a big medical bill,” she said.

Even so, Elena sought help from her physician, which in turn led to an MRI, an EEG, and follow-up visits with a neurologist. The diagnosis: a nonspecific, but controllable seizure disorder. Her Medicaid coverage meant that her out-of-pocket expenses were minimal.

Grateful that her diagnosis had not been more serious and that her condition was controllable with a relatively inexpensive generic medication (also covered by Medicaid), Elena eased back into the life of a graduate student. Then, early last year, she received disturbing family news: a cousin had been diagnosed with breast cancer in her late 30s. It turned out that Elena’s cousin had the BRCA 1 mutation, which greatly increases a woman’s chances of developing breast or ovarian cancer at a young age. Elena decided to get tested.

About a month later, Elena learned that she too had inherited the mutation, which gave her a roughly 65 percent chance of developing breast cancer and a 39 percent chance of developing ovarian cancer. By contrast, women without the gene have a 12 percent chance of developing breast cancer and a 1.3 percent chance of developing ovarian cancer.

A breast MRI she received shortly after the test revealed a mass that her doctors feared might be cancer. To learn more, she had a mammogram and a biopsy. After spending a long week waiting for the results, Elena got her first good health news in some time: she was cancer free. She was also free of medical bills: Medicaid picked up the tab for her care.

Still, the BRCA mutation can mean a lifetime of worrying, not to mention MRIs and mammograms every six months. Five months ago, Elena opted for a prophylactic mastectomy. Since then, she’s has another follow-up surgery and a final operation is planned in a few weeks. Uncomplicated surgeries like Elena’s tend to cost around $15,000. Such surgeries after a cancer diagnosis typically cost nearly three times that much. Related chemotherapy may range from $100,000 to $200,000.

Elena is glad and grateful to be putting these concerns behind her. Medicaid will cover her surgeries and the therapy that she received to help her adapt to her new reality. It also covers ongoing annual screening for ovarian cancer. She’s managed to finish her graduate degree and is again looking forward to starting her new career.

“It’s been a challenging year,” she said. “But I’ve been lucky—lucky that my timing was good and that Medicaid was there for me when I needed it. I’m honestly looking forward to paying taxes to make sure that it will be there for the next person who finds themselves in my shoes. I don’t know where I would be today without the Affordable Care Act.”

 

Darla Volgamore

Darla Volgamore received insurance through the ACA.

Like many who’ve lived through a significant medical trauma, Darla Volgamore, 63, doesn’t dwell on what might have been—which for her was a life of disability, pain, and limitation. But Darla was lucky. Today, her life is rich with activity and she has no real lingering effects of her brush with serious illness. At least, not until she takes her shoes off.

Darla had an unremarkable health history, including well-managed diabetes. She spent a lot of time caring for others—volunteering at a hospice office and a thrift store benefitting a hospice provider and coordinating meals for as many as 30 people at a homeless shelter during the winter months. She also spent time caring for her elderly father, doing crafts, and enjoying country music.

“I was just kind of being me and trying to do my part in the world,” said Darla. “It’s nice to share a smile and feel like you’re doing some good.”

Then during a trip to visit family a year ago, Darla developed a bladder infection that over the course of 48 hours morphed into full-blown sepsis, a deadly blood infection. Well over 200,000 Americans die every year from sepsis and millions more are left with lingering disabilities. It ranks as the single most expensive cause of hospitalization in the U.S.

Only months prior to her trip, Darla had signed up for Medicaid (she qualified based on income) through Colorado’s ACA marketplace, Connect for Health. When her family rushed her to the hospital, she didn’t even have her insurance card yet.

I’m lucky that my coverage didn’t have a lifetime limit, and that I was insurable at all because I had a preexisting condition. I really owe my life to Obamacare.

Darla Volgamore,
ACA Enrollee

At intake, Darla’s blood pressure was dangerously low: 60 over 45. A team of doctors and nurses battled to stabilize her as her problems snowballed: her kidneys were shutting down; she couldn’t breathe; and her liver was failing. Twenty-four hours after she had been admitted, Darla had slipped into a coma. Her doctor called her sister at home and told her that if her family wanted to say goodbye, now was the time to come to the hospital. She spread the word and some members of her extended family drove 300 miles that night to be with Darla.

And then, for nine days, nothing happened. Darla remained in a coma, hooked up to a dialysis machine, a breathing machine, and pumped full of antibiotics. While the proximate cause of Darla’s coma remains unclear (both sepsis and diabetes are potential causes), the effects were immediately noticeable. As blood flow to her extremities diminished, her feet and hands began to turn black.

Finally, on the tenth day, Darla woke up. Through a kind of mental fog common after a coma, she had to digest the information that she would probably lose both her hands and her feet.

Darla spent another three weeks in the hospital as doctors worked to get her well enough to move her into a rehab facility. All the while, her hands unexpectedly improved, as did her feet, although not as quickly or as completely. At some point, her social worker came in to tell her that her medical bills had hit $1 million.

After 30 days in the hospital, Darla was finally ready to move to a rehab facility, where she spent another three weeks building up atrophied muscles and learning to walk again. Later, her feet still bandaged, she moved back home. Eventually, eight of her toes would have to come off.

These days, Darla’s life is more or less back to normal. She volunteers most days at the homeless shelter, and works odd shifts at the thrift store and hospice office. She’s back to working in her craft room, enjoying card making and scrapbooking projects. And there’s always country music on in the background, or a trip planned to go see her friends in California.

This improbable outcome is not lost on Darla. Nor is the fact that she emerged from the whole affair without any medical debt. “I’m lucky to be here,” she says. “I’m lucky that my coverage didn’t have a lifetime limit, and that I was insurable at all because I had a preexisting condition. I really owe my life to Obamacare.”

Elena and Darla could be any of us—there is often no predicting when someone will fall ill, no modifiable behavior that precedes a serious illness. But when an illness, even a mild one, strikes, there are always hard choices for the uninsured. How will I get in to see the doctor? Should I treat this, or just wait and see? How will I pay for my care? If I can’t pay, what do I do?

These are the questions that millions more Americans would face in a post-ACA future, if its eventual replacement leaves them uninsured or inadequately protected.

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