Navigating Medical Discrimination Is Both Difficult and Necessary—Here's How To Do It

So many of us are familiar with stories like that of Kira Dixon Johnson.

In April 2016, Johnson, age 39, had just gone through a scheduled C-section for the birth of her second child at Cedars-Sinai Medical Center in Los Angeles. Her husband Charles Johnson IV noticed concerning symptoms and got staff to evaluate her. Doctors decided that Kira needed an immediate CT scan to figure out if there were any internal complications. For reasons that are unclear, the hospital delayed the CT scans for hours.

After a second emergency surgery, it was too late. Kira died of hemorrhaging, becoming one of the over 700 pregnant women in the United States who die annually, during labor, or more commonly in the period following delivery. Charles believes the hospital rushed both medical procedures and, further, provided inadequate care due to his wife's race.

Some medical professionals, including Black doctors, believe it's essential for the nature of the doctor-patient relationship to be trustful in order to ensure better outcomes.

"Even though there may be mistrust in the system, nothing [can] replace the doctor-patient relationship, there are ways to augment the patient-doctor relationship. I believe that relationship is sacrosanct," says Dr. Ijeoma Nnodim Opara, MD, an attending physician with Wayne State University Physician Group in Michigan, associate program director of the university's internal medicine-pediatrics residency, and assistant professor of internal medicine and pediatrics there.

"There are opportunities for us as healthcare professionals. We have to show up and build trust," she says.

Dr. Opara shared that she has experience as a patient, as well. She remembers the frustration with bureaucratic red tape pre-pandemic when she gave birth to her child. A few days later, she had to be re-hospitalized. Hospital personnel tried to say that relatives could not bring her newborn baby to her hospital room for breastfeeding. After a lot of back-and-forth, finally the hospital permitted the baby to come to stay in the hospital room for breastfeeding visits and infant-mom bonding time.

Dr. Opara states she received quality medical care during that time period and she notes that because of her privilege as a medical professional, she does not believe she was discriminated against. At the same time, she also believes there are systematic gaps in care that many people of color face on a day-to-day basis.

"I want to note from a healthcare and anti-racist perspective, when Black patients advocate for themselves, people are sometimes seen as 'difficult,'" Dr. Opara says. "We ask patients to self-advocate, but then we are [still] seen as aggressive, noncompliant, difficult and I want to name that. It's not likely that we advocate and when we do advocate for ourselves we know that is a risk that we have to take."

It can be hard to figure out at the moment if you are being discriminated against, particularly during a medical crisis or emergency. During pregnancy, Black women must advocate for themselves and take necessary steps, like getting information throughout the pregnancy, planning the labor and delivery, during the childbirth process, and also during the postpartum period.

Medical Discrimination Creeps Into Healthcare in Many Ways

But the maternal mortality crisis is just the beginning when it comes to medical discrimination. Far too many Black patients are dying due to receiving delayed medical diagnosis and medical care for everything from cardiovascular disease to cancer.

In 2015, Nunny Keyla Reece of Hope Mills, North Carolina worked as a medical assistant. After feeling a lump in her breast and going through a mammogram, doctors told her she had dense breast tissue and that it was "probably" a benign cyst. Reece was concerned enough to ask about a biopsy and further testing. Still, the doctor did not provide her with the "medically necessary" paperwork to get a biopsy covered by her health insurance.

Two years later, in 2017, after experiencing extreme fatigue and additional lumps in her armpit area, Reece was diagnosed with stage IV hormone receptor-positive, HER2-positive metastatic breast cancer at age 39. Reece experienced a number of medical setbacks over the next few years, according to news reports. The Tigerlily Foundation was a place where Reece volunteered and advocated for breast cancer patients in informational videos. Tragically, Reece passed away on Feb. 1, 2021.

The majority of medical professionals will not take it personally if a patient wants to get a referral to see a specialist or get a second opinion. It's up to you to decide if you want to continue seeing their primary care physician or not. And if you are a patient who has experienced medical discrimination, medical neglect, and/or repeated low-quality health care or disrespect during doctor visits, it's time to find a new doctor ASAP.

At the same time, unfortunately, many low-income Black parents who are uninsured or receiving Medicaid may find that, on an anecdotal level, there is a difference in treatment. That might translate to longer wait times for appointments, bureaucratic red tape or difficulty getting referrals and access to specialists, and more. Finding doctors while a patient on Medicaid and Medicare is challenging enough—then to be treated differently is unacceptable. But it may be harder to point to specific discrimination or neglect when it's related to structural macro-level issues.

What You Can Do if You're a Victim of Medical Discrimination

Here are some steps you can take when you go to the doctor to protect yourself from medical discrimination:

1. If you are unhappy with your doctor, it's time to change your doctor.
2. Do not feel pressured to make a significant medical decision or not make one. Always get a second opinion from another doctor. Take the time to research doctors and ask around for recommendations.
3. If you believe you have experienced medical discrimination, document your experience or experiences in writing in detail. Write down what happened and who you spoke to. Make sure to include specific dates and times.
4. Whenever possible, bring another individual or advocate with you for appointments who can take notes while hospital staff is speaking. When requesting your medical records, sit down with a trusted friend or expert, who can help you interpret them.
5. Don't be afraid to ask for help if you are overwhelmed, sick, or in crisis when it comes to recording and keeping track of phone calls, emails, online forms, and written complaints and communications about medical discrimination or malpractice cases.
6. If you are hospitalized, many hospitals have a grievance process. Schedule a phone call as soon as possible—including while you are still hospitalized— to the hospital's administration and let them know what happened. Similarly, most doctor's offices have an office administrator who is responsible for patient relations.
7. If your complaint has not been resolved or addressed, there are several additional options. Contact organizations like The Joint Commission, your local department of health, or division of human rights. Also reach out to contacts like your local board of medical examiners, or your local elected official. For each phone call or online complaint, make sure to keep track of who you spoke to, the date and time you called, or if you submitted an online or written complaint, keep that information on hand to follow up.
8. Consult with at least two attorneys for a free consultation to figure out options and if you may have a potential case involving medical discrimination or medical malpractice. Again. have relevant documents on hand and be sure to take notes.