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The Power Of Access To Affordable Care

2020; Project HOPE; Volume: 39; Issue: 3 Linguagem: Inglês

10.1377/hlthaff.2020.00022

2694-233X

Rachel J. Stern,

Healthcare Policy and Management

Narrative MattersAffordable Care Act Health AffairsVol. 39, No. 3: The Affordable Care Act Turns 10 The Power Of Access To Affordable CareRachel J. Stern Affiliations Rachel J. Stern ([email protected]) is the medical director of two Medi-Cal value-based payment programs for the San Francisco Health Network: the Public Hospital Redesign and Incentives in Medi-Cal (PRIME) and Quality Incentive Program in Medi-Cal (QIP). She is also a primary care physician and an assistant professor of medicine at the University of California San Francisco. The author thanks her mother, Janice R. Spinner, for the nurturing, encouragement, support, guidance, and health insurance coverage.PUBLISHED:March 2020Free Accesshttps://doi.org/10.1377/hlthaff.2020.00022AboutSectionsView PDFPermissions ShareShare onFacebookTwitterLinked InRedditEmail ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits AbstractA patient and student with severe asthma chases adequate insurance coverage until the Affordable Care Act provides something more.TOPICSAffordable Care ActAsthmaMedical educationPharmaceuticalsPre-existing conditionsPrivate health insuranceAccess to careCosts and spendingDisabilitiesIllustration by Brett RyderPerched on the exam table, I asked my primary care physician, “Is there anything else we can try? I’m spending most of this winter in bed.” I was twenty-three years old and had severe asthma. I had used five inhalers, three pills, and two subway lines to arrive in her midtown Manhattan office. Despite this pharmacopoeia, I still needed a break to catch my breath midway up the flight of stairs on my way out of the subway station. As she prescribed my third course of oral steroids in as many months, she replied frankly, “Listen, Rachel. You have a disability. You need to adjust to the fact that your life is most likely going to be this way long-term.”That statement left me as winded as the asthma itself. I certainly lived the life of a person with a disability. Despite treatment regimens that made my face swell and my bones thin, as well as degrading my voice, I spent many weeks each year working from home because it was too taxing to commute to work. However, I had always imagined that the period of severe asthma would be temporary. When I was a child, my asthma had been mild. In high school I used an inhaler only before sports or in response to particularly smoggy Los Angeles air.My breathing worsened suddenly during my senior year in college. That winter I was hospitalized three times, and in between, I required rescue medication to walk to classes. I followed every recommendation I could find to improve asthma: I perfected my inhaler technique; acquired a nebulizer machine; stopped riding my bike; and avoided going outside between 6:00 a.m. and 10:00 a.m., when the pollen count was highest. Yet still I huffed and puffed my way to the emergency room about once a month.In between trips to the hospital, my life diverged from those of my peers as I learned how to be chronically ill: They went to all-night parties; I discovered that each time I took another course of steroid pills, I couldn’t sleep for a week. They built sets and acted in plays, then brought me dinner so I wouldn’t have to brave the four flights of stairs to the dining hall. I fainted so many times that a physician put me on a high-salt diet. The biggest rift was in our post-college plans: They designed elaborate international adventures or secured unpaid internships; I had developed an expensive preexisting condition, and my priority was to get a job—any job with health insurance—and avoid a gap in coverage.At the time, insurance companies were permitted to deny insurance coverage or charge higher premiums to people with any medical problems from epilepsy to a past abnormal Pap smear. From 2007 to 2009 the four largest insurers used preexisting conditions to deny coverage to one in seven applicants for private insurance, according to a 2017 report from the House Committee on Energy and Commerce. If a person had a gap in their insurance coverage—for instance, a college student who graduated in June and began work in September—the new insurer could decline to pay for treatment of a preexisting condition for the first three months or even a year of coverage. If I had an insurance gap, I would have needed to pay for at least three months of asthma medicines out of pocket. When I was graduating from college and looking for work, my inhalers alone cost over $1,000 a month, and each hospital bill was ten times that. To avoid crippling debt, I seriously investigated barista work at Starbucks before securing full-time employment as a research assistant studying health disparities in Harlem.One and a half years later, I was in my general practitioner’s office being told to expect to be this sick for the rest of my life. After grieving about that news, I applied this information to my next major life decision: where to attend medical school. By this time, I had completed postbaccalaureate premedical classes at night while continuing full-time employment during the day, again in order to maintain my health insurance. I did wonder if I was physically capable of tolerating the rigors of medical training. But like many doctors, I forged ahead with a determination that bordered on stubbornness. Once I completed the prerequisites and applied to and interviewed for medical school, I was in the fortunate position to be able to choose between schools.Health care costs and coverage were major drivers of what medical school I ultimately attended. Student health coverage in those days was notoriously skimpy. So I scoured the internet for coverage details for each school; compared them to what I expected to need; and added the cost to the usual considerations of room, board, and financial aid. At one institution my out-of-pocket medical spending would have added over $10,000 per year to my tuition. I ultimately attended the University of California San Francisco (UCSF), which was at the time an outlier in its robust coverage.New DiscoveriesI aspired to the life of a normal medical student within the confines of my illness. The anatomy lab sat atop one of San Francisco’s notoriously steep hills, on Parnassus Avenue. Fortunately, UCSF has elevators in between some steep streets. So I rode one, beside patients on oxygen, to arrive at my anatomy courses. Once in the lab, I wore a mask to protect my lungs from the formaldehyde, and I still often had to leave midway through dissections, coughing and breathless. I would then crawl into bed, dizzy and nauseated, and try to visualize what the illustrations in Frank Netter’s Atlas of Human Anatomy would look like in three dimensions.While I was immersed in the physiology of the liver and kidneys, the Affordable Care Act (ACA) was signed into law. It was a victory for the many uninsured people I had worked with in Harlem who would now have access to Medicaid. Personally, I was grateful to no longer have the term preexisting condition stamped on my back like a target, as the new law consigned such conditions to the rubbish heap of the past decade. But I didn’t expect the ACA to transform my life. I took advantage of the provision that enables adults younger than age twenty-six to be covered by their parents’ insurance, switching from my medical school’s adequate student health services to my mother’s generous employer-sponsored health insurance. This allowed me to begin receiving specialized care at the university’s medical center.There, fantastic physicians made two discoveries. The first was that my asthma had a root cause: An anatomic defect in my stomach and esophagus caused acid to pour into my lungs, irritating and ultimately scarring them. It is still unclear why this problem I was born with suddenly worsened in my late teens. After I started treatment with a single high-dose acid-suppressing medication, my asthma nearly evaporated. I began first trudging up Parnassus Avenue, then walking, and eventually riding a bike. Six months later I student-taught a class in the anatomy lab without a mask.The second discovery was that I had adrenal insufficiency. Some of my most bothersome symptoms were dizziness, nausea, fatigue, and unexplained low blood pressure. I had been hospitalized twice for low blood pressure in my two years in New York City. None of these were asthma symptoms. Instead, they were side effects of the treatment: My inhalers had suppressed my body’s ability to produce cortisol in response to stress. “Cortisol,” the senior endocrinologist stated gravely, “is the only hormone necessary for life.” Had I undergone surgery or had a serious infection like pneumonia during the years in which the adrenal insufficiency went unrecognized, I might have died.The Strengths And Limitations Of The ACAThe ACA has increased access to health insurance for millions of Americans over the past ten years. Between the health insurance Marketplaces, the expansion of eligibility for Medicaid, and the increase in dependent coverage that benefited me, the ACA was extraordinarily valuable to young people like me: It cut the proportion of young adults without insurance by more than half—from 32 percent in 2010 to 14 percent in 2017, according to a January 2019 report by Rachel Garfield and colleagues from the Henry J. Kaiser Family Foundation. Yet its reach has not been ubiquitous or equitable.I attribute my health and well-being to three of the ACA’s provisions: the protections for preexisting conditions, minimum coverage requirements for insurance plans, and dependent coverage for people younger than age twenty-six. All of these provisions—especially the third—have disproportionately benefited people with financial and educational privilege like me. A March 2015 study of the dependent coverage expansion showed that it primarily increased coverage and improved health outcomes among college graduates. To receive dependent coverage at all, a person needs parents who have employer-sponsored insurance and who can pay their premiums. And for that insurance to finance the six-figure medical workup I received, it has to be more generous than most plans.In my twenties I structured my life around accessing uninterrupted health insurance and avoiding catastrophically high costs. Despite including the word “affordable” in its name, the ACA did not resolve the issues of affordability with which I struggled: It just transformed them. Cost sharing continues to be a challenge. Although the ACA limited deductible amounts, it did not place limits on premiums. In the ten years since it became law, premiums have skyrocketed, while deductible limits have gradually risen. This means that many chronically ill people still face unmanageable medical costs despite being insured. A recent survey of employer-sponsored insurance, conducted jointly by the Kaiser Family Foundation and the Los Angeles Times, found that among employer-insured families in which someone has a chronic illness, 75 percent had to forgo needed care because of the cost.A Foundation For Universal CoverageI now work as a primary care physician in San Francisco’s safety-net delivery system. Many of my patients thank the ACA for their health and well-being. I care for a man in his fifties whose lung disease has left him too ill to work but not ill enough for permanent disability. Before the ACA his health care consisted of emergency room visits and prescriptions for inhalers he could not afford. After enrolling in Medicaid under the expansion, he purchased inhalers, learned how to use them correctly, began using medication to help him quit smoking, and hasn’t been hospitalized in years. Experiences like his explain why the ACA’s Medicaid provisions are so popular. In states where Medicaid eligibility has not changed since passage of the ACA, many voters would like their states to expand.My patients also number among those the ACA has left behind: families whose medical bills have bankrupted them, twenty-seven-year-olds with diabetes who are unable to grapple with the astronomical price of insulin, and migrants from states that did not expand Medicaid whose chronic diseases have wrought permanent damage. Even in San Francisco, where virtually every patient has access to adequate health insurance or something akin to health insurance, vulnerable people still can’t afford the health care they need. The ACA was a remarkable step forward in coverage for all Americans, but it must be considered just that: a foundation on which universal affordable coverage should be built.I will be forever grateful for the foundation of health that the ACA provided for me. It took three years for me to fully wean myself off the extensive asthma medication regimen, remedy the adrenal insufficiency, and obtain a medical degree. In medical school I received disability accommodations to complete my clinical rotations, but by the end, I no longer needed them. During my residency I began biking seven miles each way to work. I still carry an inhaler in my pocket, but I take it out more often to demonstrate to patients and residents how to administer one than to use it myself. Loading Comments... Please enable JavaScript to view the comments powered by Disqus. DetailsExhibitsReferencesRelated Article Metrics History Published online 2 March 2020 Information© 2020 Project HOPE—The People-to-People Health Foundation, Inc.PDF downloadRelated articlesThe Ten Years’ War: Politics, Partisanship, And The ACA02 Mar 2020Health AffairsThe Power Of Access To Affordable Care17 Mar 2020Default Digital Object Series