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 week a draft repeal bill from the House of Representatives was leaked.
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 policy makers (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 groups, age groups and racial and ethnic groups and 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.
As a healthy, 29-year-old graduate student, signing up for a health plan was not exactly at the top of Elena’s 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 Affordable Care Act’s expansion of eligibility to all adults making up to about $16,000 a year, and Elena’s 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 plan, became a Medicaid beneficiary.
Several months later that casual decision to enroll in Medicaid 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.
“I was worried something was seriously wrong with my health,” said Elena, but that wasn’t her only fear — still new to Medicaid Elena had no clear idea what care would be covered and how much she might have to pay out of pocket.
“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.”
But 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. And she needn’t have worried about medical bills — her Medicaid coverage meant that her out-of-pocket expenses were essentially zero.
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 — a mutation of tumor suppressor genes that 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. The mutation gave Elena a roughly 65 percent chance of developing breast cancer and a 39 percent chance of developing ovarian cancer at some point in her life. 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 testing revealed a mass that her doctors feared might be cancer. To learn more, she subsequently had a mammogram and a biopsy. After spending a long week waiting for the results, Elena got her first good news from the health care system in some time: she was cancer free. She was also free of medical bills: Medicaid picked up the tab for all her care.
Still, the BRCA mutation can mean a lifetime of worrying, not to mention MRIs and mammograms every six months. Elena opted for a prophylactic mastectomy. That initial surgery was just five months ago. Since then, there has been 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 are typically almost three times that much. Related chemotherapy may range from $100,000 to $200,000.
Elena is glad and grateful to largely be putting these concerns behind her. Medicaid has (or will) cover all 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. Through all the various health-related diversions, she’s managed to finish her graduate school 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 in the future. I don’t know where I would be today without the Affordable Care Act.”
Like many individuals who have lived through a significant medical trauma, Darla Volgamore, 63, doesn’t dwell on what might have been. “What might have been” 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 aftereffects of her brush with serious illness. At least, not until she takes her shoes off.
Darla had what a doctor might call an unremarkable health history. She had well-managed diabetes, but to the extent that she had any real worries, they were about other people rather than herself — she volunteered regularly at a hospice office and a thrift store benefiting Hospice and coordinated daily meals for as many as 30 people at an area homeless shelter during the winter months. She also spent time caring for her elderly father, doing crafts and enjoying country music, often tapping along in time to Lady Antebellum, a favorite band.
“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, one year ago during a trip to visit family, Darla came down with a bladder infection that over the course of 48 hours morphed into a full blown case of sepsis. Sepsis is essentially an infection of the blood and it is both deadly and expensive. Well over 200,000 Americans die every year as a result of sepsis and millions more are left with some lingering disability. 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. She didn’t even have her health card yet and when her family rushed her to the hospital, no one could actually prove that she had coverage.
At intake, Darla’s blood pressure was a dangerously low 60 over 45. A team of doctors and nurses battled to stabilize and diagnose the snowballing host of issues: her kidneys were shutting down; she couldn’t breathe; her liver was failing. It looked like a losing battle. 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 in the ICU, 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 did wake 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 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 at the hospital who she had befriended came in to tell her that her bill 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 the toes under those bandages 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 the 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 nearly any of us in that there is often no predicting when a person 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 the “replacement” leaves them uninsured or inadequately insured.