What it looks like when racism affects healthcare — and how we must do better.

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Collage by Yunuen Bonaparte. Photos from left to right by Michelle Leman, Klaus Nielsen, and Tima Miroshnichenko.

In 2014, while in graduate school in Chicago, I underwent treatment for a serious illness. After spending an intense month in the hospital, I was finally transferred to outpatient treatment with weekly doctor appointments. One night, kept awake by insomnia, nausea, and with my hair inexplicably falling out, I wondered if I should page my doctor to ask for a medication adjustment or if I should wait 5 days until my next appointment.

I was a foreigner from the Caribbean and had only been in the United States a few months, so I was still unsure of how to navigate the U.S. healthcare system. I texted two American friends to ask: a white friend from the East Coast, and a Black Midwesterner.

The first said to page him, that’s what doctors were there for.

The second told me not to bother, that it wouldn’t work and doctors would think I was a difficult patient if I asked for anything outside of hours.

What I perceived as a personality difference at the time, I later realized reflected different realities in the medical system in the United States.

With the murder of George Floyd and the rise of the Black Lives Matter movement, the American public has been awakened to what many have known for years: Racism affects every aspect of daily life.

Healthcare is no exception.

“Across the board, patients of color receive less in both quantity and quality of care.”

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Black Americans’ experience with the medical industry has a long and sordid history that continues to this day. As recently as 2016, some medical students held false beliefs about biological differences between Black and white patients, such as a belief that Black people have thicker skin, their nerve endings are less sensitive, or their blood coagulates faster.

Across the board, patients of color receive less in both quantity and quality of care. This affects their visibility in the medical sphere overall. If medical staff are not equally invested in the well-being of patients of color, or are biased against believing their pain, their health is endangered even with the best healthcare available to them; which patients of color do not often have access to in the first place.

One disturbing recurring finding is that patients of color are less likely to be prescribed pain medication.

Pain medication is distributed at a doctor’s discretion, and depends on their assessment of a patient’s pain levels. An analysis of 21 studies spanning 20 years in the journal Pain Medicine showed that race clearly impacts this, and Black patients were most affected, with the risk for undertreatment as high as 41 percent. The discrepancy in treatment may not be conscious discrimination, but implicit bias might associate patients of color with drug-seeking behavior or an assumption that they have a higher pain tolerance.

This is a phenomenon that Micheal Cohen, a 43-year-old Black resident from Washington, D.C., has experienced firsthand. After undergoing a few painful dental procedures with little or no pain medication, Cohen began speaking to others about their experiences and was shocked to learn these incidents were not the norm; that his non-Black friends indeed received pain medication during dental visits. He immediately switched dentists and began to insist on receiving pain treatment during serious procedures.

Cohen described other unjust instances. In one, surgery on his finger took place with an insufficient anesthetic, allowing him to feel every incision. And in another — treatment discrimination not limited to pain medication — a practitioner offered to pray with him instead of give him prophylactic medication to prevent HIV after he was concerned about exposure.

Cohen’s experiences, while jarring, are, again, not unusual. Longitudinal studies have shown that even with diversity training for medical staff and published research, disparities still exist. Cohen stated that to get the treatment he needs, he has to act as a firm advocate for himself.

At the same time, he described the tension he faces as a Black man, knowing that if he appears too forceful, staff might feel threatened. “I literally have to be very, very calm and diplomatic with what I say,” he explained. “It’s not like I can be blunt and just say, ‘You’re hurting me. What are you doing?’”

Often, though, even before patients step foot in a clinician’s office or hospital room, in clinical trials, drugs are designed without people of color in mind.

As we have seen with COVID-19 vaccines, drugs must be thoroughly tested in clinical trials before they hit the market, a crucial step. Drugs can work differently in individuals, depending on their age, gender, and possibly ancestry. Around 40 percent of the U.S. population belongs to a racial or ethnic minority, but that’s not who is in clinical trials. In 2019, figures released by the FDA showed 72 percent of participants were white. There are multiple reasons for this.

Clinical trials are often set up by white researchers, with the majority of grants going to them. They often target white communities as well, perhaps not deliberately, but as a result of ease of access, ineffective cross-cultural communication, and inadvertent barriers to entry.

Additionally, Juliette G. Blount, nurse practitioner and educator at The Health Equity NP, explained that for some, there is still a lingering — and not unwarranted — mistrust of participating in clinical trials.

“There is a long history of people of color being abused, taken advantage of, and quite frankly, experimented on by the government, as well as by private industry,” said Blount. She referenced the infamous Tuskegee study, and the more recent example of Dr. Susan Moore, a physician in New York who was discharged from the hospital despite insisting she was displaying symptoms of COVID-19, and later died of the illness.

Blount also highlighted the existence of barriers: the ability to take time off during the day to fill out an in-depth questionnaire, undergo side effects of a drug, and have easy access to a medical center. These are things that many people of color may not have, with majority Black populations less likely to live near a healthcare provider and have insurance, and more likely to work in low-paying jobs.

In an effort to address this, the National Institute of Health is currently working to build a more diverse healthcare database called All of Us. The initiative aims to gather patient data for research across healthcare, and will take place over at least 10 years.

“But algorithms are written by humans, built with data from a racially unequal society, and, as studies have shown, bias is coded right into them.”

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Doctors have used patient data to help assess risk for years. For example, think of the BMI chart (which has recently been criticized for its imprecision, but bear with me). This gives physicians an idea of when patients may be at risk based on their height and weight compared to the average height and weight of the population. As technology has advanced, however, the field has moved from guidelines to software. Using certain factors (lifestyle, patient data, etc.) an algorithm, for instance, can help determine a patient’s risk profile and help physicians decide which patients may need urgent care.

Or at least, that’s the thinking.

Designed to feed off data, the appeal of computer programs is speed, accuracy, and neutrality. But algorithms are written by humans, built with data from a racially unequal society, and, as studies have shown, bias is coded right into them.

In 2020, three physicians surveyed 13 medical tools used across specializations — cardiology, obstetrics, and more — and highlighted their racial bias.

For example, cardiologists use the American Heart Association GWTG-HF risk score to assess patients’ risk of mortality. A higher numerical score means higher risk, raising a patient’s chance of getting services. It assigns three more points to anyone identified as non-Black, putting them at higher risk, lowering the score for Black patients on average.

Researchers did not find rationale for this adjustment in the algorithm, other than that the adjustment considered Black patients lower risk overall, which is contrary to current data. This adjustment has real-world implications: A 2019 analysis of a Boston ER showed Black and Latinx patients were less likely than white patients to be admitted for cardiac care.

This may seem inherently racist, but algorithms are built to work from predictable patterns. If Black patients, for example, have higher blood pressure on average, does that mean you can expect them to have higher blood pressure overall? An algorithm might think so.

Bias doesn’t stop with algorithms. A 2020 study in the New England Journal of Medicine showed pulse oximeters (devices that measure oxygen saturation in the blood) were shown to be three times less effective for Black patients. It turned out they hadn’t been calibrated for darker skin.

Technology is no smarter than the designers behind it, and needs to be considered and constructed in context.

In Chicago, I spent most of my time as a patient at a gleaming suburban hospital. There, I received around-the-clock care from a friendly team that took my blood pressure and temperature at regular intervals. The staff and patients were also majority white, something that stood out whenever they apologetically stumbled over my name, or when I saw on my intake notes that they described my light brown complexion as “dark,” even bordering a city with a sizable Black population.

Once, though, in an emergency on an exceptionally busy night, I was transferred to a hospital closer to the city center for 3 days. At first glance, I noticed that the patients looked a lot more like me. Then I realized the building was smaller, older, more dimly lit, and the staff exhausted. Four workers monitored a floor of inpatients while they struggled with administration, and I felt lucky if someone was in a good mood when I caught them to ask if I could get some water for my medication.

The difference reflects a deeply entrenched problem, which reaches far beyond hospital walls but has a huge impact on people’s health.

“While there is a high rate of hypertension in Black Americans, studies do not prove a definitive link between race and hypertension. What is more likely is social determinants contribute to hypertension.”

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Even if algorithms were corrected and devices rewired (both necessary corrective steps), that does not address the root factors that lead to health problems in communities, inferior treatment facilities, or racial bias from providers.

Blount gave the example of the pervasive false belief that people of African descent have a genetic predisposition to hypertension. While there is a high rate of hypertension in Black Americans, studies do not prove a definitive link between race and hypertension. What is more likely is social determinants contribute to hypertension. Blount explained that could be poverty, insufficient access to healthy food, and the effects of chronic stress (including enduring racism itself), among others.

The factors that contribute to health equity — access to caring practitioners, healthy food, exercise, living wages, representation — may not be in reach for many people in marginalized groups, like some Hispanic or Black American communities. However, algorithms and medical devices are built and designed using the average healthcare data of these underserved and underrepresented groups as a baseline. Accepting the data of an oppressed population as normal — or excluding them from data collection entirely and then building foundational health models or devices based on that data — only serves to further deepen inequality.

Blount emphasized the importance of acknowledging the existence of structural and institutional racism, and grappling with the ramifications of that. Additionally, advocates state that real change needs to start with medical professionals addressing their own biases and actively working toward health equity.

Concretely, this might look like medical boards and staff committing to equitable care for low-income and non-English speaking patients, reviewing hiring practices, and ensuring staff are representative of the population. Insurance companies and sponsors of healthcare institutions can discourage use of biased measures or devices, or partner with communities for preventive care and screening.

These, however, all require investment and a sense of personal accountability.

“I find that people are still spinning their wheels, ducking and dodging because they’re uncomfortable,” said Blount. And that’s because “these examples of racism are disturbing and the feelings that come up when people hear about these incidents make them uncomfortable. But… there’s no change until you go through discomfort.”

She added, “If we want to be able to say to ourselves that as the U.S.A., we are the beacons of democracy, if we really want that to be the case… there’s a lot of stuff that we have to reckon with first.”