For years my aunt Sylvia knew something was wrong. She told doctors she was experiencing pain, but they shrugged it off as age-related. Sylvia sought preventative care in the emergency room, where, like other Medicaid recipients, she knew she would eventually be seen by a doctor. But still, she found herself misdiagnosed and undertreated.
Sylvia joked often with my mom that those on Medicaid were considered disposable in the emergency room. I remember overhearing her say “los ricos don’t have to worry como los pobres.”What could have been avoided during a high-quality check-up grew into something far worse.
In January of 2009, my aunt was diagnosed with stage 4 cervical cancer. She lost her battle with the disease nearly 12 months later at 48 years old. Her experience with the U.S. healthcare system is representative of the country’s inequality — some are seen as deserving, others undeserving.
I still see her struggle around us. In the United States, we don’t have the right to health care — we have the right to pay for health care. People from nearly all levels of income are scared of medically-related bankruptcy, and it’s all too easy to understand why someone might forgo the necessary care or accept undertreatment when faced with the potential of financial ruin.
My aunt never fell into crippling debt, but only because she refused anything that would cost her out of pocket. But for many people, the emergency room becomes punishing thanks to its high and unpredictable costs. Being rich and going to the emergency room is about instant gratification. Being poor and going to the emergency room is a last resort. This creates a tiered system where values are assigned to the people who occupy each rung. Sylvia found herself defined as undeserving.
Government-funded programs like Medicaid aren’t the problem. The issue is a healthcare system as a whole, which acts as a microcosm for the disparities that cut across all lines. At its most absurd, private insurance becomes “wealthcare” — like exclusive medical services that are made known through word of mouth alone. When the richest American men on average live 15 years longer than the poorest ones, something is fundamentally wrong.
I revisited the emotions about my aunt and her passing when I read an article last winter in The Nation about how Black women in Alabama with cervical cancer were twice as likely to die than white women. “This disparity is all the more striking,” reporter Michelle Chen writes, “because cervical cancer is easily preventable and treatable with adequate gynecological care and early screenings, which generally lead to a 93 percent five-year survival rate.”
Alabama currently holds the top spot for cervical cancer death rate in the United States, Human Rights Watch found — a statistic that they connect back to the state’s “patchwork system of social safety net care.” In Alabama, that doesn’t even include the Medicaid expansion offered by the Affordable Care Act.
My aunt did not live long enough to see the Affordable Care Act, but she still had some form of coverage by the time of her diagnosis. Since 2013, the expansion has given coverage to 14.7 million people — many of whom now have consistent insurance for the first time in their lives. But getting insurance later in life doesn’t retroactively fix all the years without care. Sylvia didn’t always have Medicaid, and for much of her life, she depended on over-encumbered low-income health clinics. She never saw good health as her right, thanks in part to the racialized delivery of healthcare — almost forty percent of Latinas were uninsured in 2012, the Kaiser Family Foundation has reported.
Sylvia’s stage 4 cancer did not develop overnight, just like Alabama did not fail its cervical cancer patients on its own. Sylvia passed away because the U.S. healthcare system, like Alabama’s, is held together by a series of patchwork reforms. But these hollow fixes keep inequality inherent in this system, just to preserve corporate profits.
The difference between small incremental change and structural reform is the difference between healthcare as a good for sale and healthcare as a human right. Many of the groups who fought larger structural changes during the fight over the Affordable Care Act are the same drug makers, insurance companies, and private hospitals who spent $143 million in 2018 lobbying against Medicare for All.
When legislators put forth proposals to fix the piecemeal nature of our current healthcare system, they’re met with fearmongering about middle-class tax increases. Who’s missing from the conversation? The millions of people who are uninsured, like low-wage workers who don’t receive healthcare from their employer, or people who are unable to work. Yet no one questions the compensation of healthcare profiteers like Daniel Loepp, the CEO of Blue Cross Blue Shield of Michigan — Sylvia’s home state — who took home a record high $19.2 million last year alone.
Most people claim to have the same goal of universality when proposing healthcare reforms. But the differences between two visions — whether healthcare is a good or a right — need to be made more explicit. Medicaid patients with cancer still die sooner than those with private insurance, in part because a system that can link quality of healthcare to socioeconomic status can never really be universal.
If my aunt had always been guaranteed the same standard of healthcare as someone who could tap into the wealthcare that is elite private insurance, I’m sure the disease would have been detected years prior. It may never have developed in the first place.
Experiences like Sylvia’s should be the anomaly—but they’re not. Plenty of the 140 million poor and low-income people in this country have their own stories like hers. Right now, there’s a chance to fix this deadly status quo. Imagine if, from birth, a new generation could experience guaranteed care, with quality not determined by wealth or income, but instead delivered as the human right it should be. It’s not as radical of a vision as the elite and corporations might want us to believe. It’s what we know we deserve.