Ta’Rajee Omar had no reason to believe that she had HIV until her ophthalmologist called her on Veterans Day 2020. She’d visited him two days previously at her eye care center in Detroit to discuss a scratch on her retina, so she was not surprised to hear from him even though it was a national holiday.
During their conversation, he insisted that she return immediately to get tested for HIV. As a personal friend of mine, Omar reached out to me for support. My initial concern that she might lose vision in one of her eyes quickly turned to dismay upon hearing her doctor’s suspicions.
After discussing her risk factors, which were negligible, I asked her, “Why is he asking you to get tested?” Omar did not know; her doctor neglected to explain himself. Nor did he ask questions about her sexual health or inquire into her family’s history with autoimmune diseases. All she knew was that her doctor was convinced that she had the sexually transmitted disease.
After I assured her that she would be fine, whatever the outcome, Omar drove to her vision center, where she underwent a battery of tests. Though I’d suggested that she demand same-day testing, Omar was told that she would have to wait two days for results.
Six days later, her doctor called to deliver the results: Omar was HIV negative, but she had traces of shingles in her system.
But Omar already knew that. Because she did not catch chickenpox as a child, she was not surprised to discover that she’d contracted shingles a few years previously. If her doctor had bothered to ask her basic questions about her health, or to request that she fill out a general health intake form—like those that one encounters at nearly every health center in the country—he would have discovered this too.
When Omar asked why he assumed that she had undiagnosed HIV, he told her, “Because you have a compromised immune system.”
“That was his reasoning,” she said in a phone interview. “He didn’t ask anything about my family history. I told him, ‘There are so many autoimmune diseases that you could have tested me for. So why was this the one?’” Even after she raised this question, Omar says the doctor administered the test just to be sure, even though there was no conversation between them to raise concern about her HIV status.
Omar says he apologized, but was dismissive about her feelings or concerns. “He was like, ‘We’ll talk more in depth about it at your next appointment.’ But he doesn't realize how damaging that was. I told him that he can’t be talking to people that way. Because if I didn't have the support that I do, this conversation could have gone another way.”
More than being upset on behalf of my friend, what bothers me most about this situation is the doctor’s reckless, dehumanizing behavior. Instead of introducing unnecessary stress into her life, I wish that this doctor had called to schedule a face-to-face appointment.
In my fantasy world, where Omar’s doctor treated her with compassion and dignity, he would have explained that he was concerned that she might have an autoimmune disease. Though it is probable that she would have divulged her information about having shingles, this could have turned into a conversation about her overall well-being, including her sexual, physical, mental, and emotional health.
In this make-believe world, where Omar’s white cisgender male doctor was a caring person, she would have left the clinic feeling cared for and relieved that the person she’d entrusted with her vision had considered every aspect of her health before determining which treatment plan to undertake.
I spoke about this incident with David Malebranche, M.D., M.P.H., a health care provider who specializes in working with people living with HIV. He was appalled to hear about the actions of Omar’s doctor.
Malebranche stated, “The general ethical norm is to give this kind of information in person. To me, this was irresponsible and unethical. You just don’t do that over the phone without an explanation. It’s tricky enough to suggest that [someone might have HIV] face to face.”
Despite the “good news,” Omar is still trapped processing the trauma of what might have been. “When I didn’t find out the results like they told me I would,” she said, “I got hella paranoid and started dissecting my previous relationship to the point where I went down a rabbit hole with a crazy narrative.”
Omar says that having been caught in a place of uncertainty, she cannot stop thinking about people in similar circumstances who ended up having the virus. But what shakes her most about the experience is her doctor’s casual racism. Unfortunately, her experience is far from uncommon for Black women, who to this day experience abuse and neglect from the medical establishment.
According to the Centers for Disease Control and Prevention (CDC), Black women are three times more likely than white women to die from pregnancy-related complications or to suffer from a severe disability resulting from childbirth. Black people continue to be disproportionately enrolled in studies that do not require their informed consent, while Black women are underrepresented in studies that do require their consent, even for conditions that affect them. For instance, a ProPublica analysis of data from the Food and Drug Administration (FDA) reported that between 2015 and 2018, for more than two-thirds of the 31 cancer drugs approved during that time period, only 5% of the patients included during those trials were Black. In 2016, the National Academy of Sciences published a study on pain assessment that concluded that half of the 222 white participants—medical students and residents—believed that Black people had thicker skin and experienced less pain than white people. And in 2019, following a review of studies that together included more than 10,000 people with data on the use of analgesia for pain management, The American Journal of Emergency Medicine found that Black patients were 40% less likely to receive medication for acute pain than white patients, and 34% less likely to be prescribed opioids.
“And people wonder why Black people don’t go to the doctor,” Omar said. “It’s not that we don’t want to know what’s wrong with us, but when we do go in, we get treated like this. This is very harmful; being in a space where medical professionals look at you like, ‘You’re a Black person, so we’re not going to treat you with care,’ or ‘You have a certain insurance carrier that we don’t like, so that’s that.’
“They’re not treating you like a human being or someone who has a son and loved ones, careers, and dreams. You’re just a Black statistic to them. And that is so painful.”
I advised Omar to file a complaint at her vision center with its consumer advocacy board and to find a new doctor immediately. If you have experienced similar disregard from your doctor, know that you can move on to someone else. Even though we are in the middle of a pandemic, there is no reason for any of us to put up with this abuse.
Whether we are a Black cisgender HIV-negative woman or a Black gay man living with the virus, having a doctor who cares enough about our well-being to ask the basic questions every time we visit is not only a right, it is a lifesaving and essential component to health care.