A doctor’s office shouldn’t be the place where you feel ignored, unseen, unheard, or invisible. However, that’s par for the course for Black women in America. When it comes to HIV, there are many ways that Black women are ignored and misunderstood. Doctors often don’t perceive Black women as being at risk for HIV, and some are even ignored when they ask for pre-exposure prophylaxis (PrEP) to help protect themselves. This is even though Black women accounted for 57% of new HIV diagnoses among all women in the U.S., according to the most recent seroconversion rates. Keep in mind that Black women account for less than 7% of the country’s overall population.
TheBody spoke with 35 Black women about their experience with health care providers. The general consensus from those conversations has been that doctors assume that HIV only affects gay men and disregard Black women’s risk for the virus without considering how their partners might make them vulnerable.
Every woman who spoke with TheBody shared that her doctor projected binary norms onto her as if one-on-one “traditional” relationships were the sole option available. Because each woman reported that she was only having sex with one man, other potentially lifesaving conversations about their sexual health did not take place.
When Fabian—who asked that only her first name be used—confronted her doctor about why PrEP had never been presented to her as a prevention option, she was told, “Why would you want that?” After explaining that she was sleeping with someone in an open relationship, she was told, “[PrEP]’s not for you. You don’t need to worry about it.” Fabian shared that her doctor’s response left her worried about what else he might be withholding from her.
Essential Questions Without Judgement
In certain Black communities, it is quite common for multiple women to be involved with one man. Oni Blackstock, M.D., M.H.S.—an HIV physician and researcher, and the former assistant commissioner of New York City’s Bureau of HIV—says that one reason this arrangement exists is that “mass incarceration reduces the ratio of Black women to Black men in terms of eligible partners.”
In these instances, it does not matter if a woman is “monogamous” because her partner’s concurrent relationships can increase her exposure to HIV. Unfortunately, many patients are unaware of this. That’s why Blackstock says that providers need to think about community-level and structural factors when providing Black women with care, instead of focusing solely on individual behaviors. That means asking questions that transcend perceived norms, and offering care without judgement.
Judgement and stigma are at the root of destroying healthy communication between clients and care providers. Numerous Black women have told me that after disclosing their involvement in “non-standard” relationships with their doctors—such as seeing a man living with HIV—they felt judged for it.
Blackstock says that she has known this to happen with patients who were attempting to access PrEP as part of their prevention toolkit. One woman told Blackstock that while calling her insurance company to learn if PrEP was covered, the representative responded, “I don’t understand; why would you willingly have sex with someone with HIV?”
Leisha McKinley-Beach, an HIV advocate who has been fighting the virus for nearly 30 years, shared that a woman she counseled—after speaking to her doctor about PrEP because her partner was living with HIV—was told, “You’re so beautiful. Why would you throw your life away on someone who has HIV?”
In addition to instilling a feeling of shame, Blackstock says that these judgmental comments can dissuade people from pursuing or using different tools that are available to them, even though having more options makes HIV prevention more viable for more people. McKinley-Beach agrees. “Your clinician is the expert, and you think they know what’s best for you,” she says. “If you’re hearing those types of comments, then automatically you think, ‘This must be wrong.’ But what’s wrong is having to deal with that type of stigma.”
Listening Without Hearing
More than sabotaging Black women’s prevention options, Blackstock says that stigma like this can discourage Black women from communicating conditions that affect their overall health such as food insecurity, domestic abuse, housing issues, or neurological problems. Such was the case with Peta, (a pseudonym), a woman who spoke with me previously about her lack of access to PrEP.
In a follow-up conversation, she revealed that while discussing an issue regarding her breasts, her doctor repeatedly dismissed her concerns. Twenty years ago, Peta had breast-reduction surgery, which required her surgeon to cut off her areolas in order to remove extra breast tissue. Reattachment can result in a loss in feeling or other nerve damage. After telling her current doctor that her left areola had begun to itch, Peta says that she was told, “Oh, it’s probably because you changed your laundry detergent.”
Peta responded that she didn’t say anything about detergent because she had not changed it. Her doctor proceeded to inaccurately attribute the itch to a change in bras, dry weather, and a new lotion routine. “She did everything,” Peta says, “but take me seriously. Finally, I laughed, because it was awkward and I didn’t want things to get unpleasant because I like her. But I’m going to get a second opinion.”
Peta is waiting to undergo screening for her breasts from a different doctor, in case she has breast cancer, which is the second leading cause of death for Black women in the U.S. Unfortunately, for Black women, what Peta experienced is par for course when dealing with the medical industry.
Doctors Need Better Training in Communication
Blackstock says that one reason why communication is poor between doctors and Black women is that many doctors begin their training with preconceived notions and phobias, which their professors fail to correct or address. She says this is why medical schools and health professionals need to “completely overhaul the curriculum.”
“A lot of the curriculum hasn’t changed from what was taught several decades ago,” Blackstock says. “And when people are in practice, there’s no expectation that they will stay up to date.” For Black women, the most harmful part of this antiquated system is that outside of patient satisfaction surveys or stripping medical licenses for the most egregious offenses, there are few consequences for providers and little incentive to improve.
This is in keeping with a decades-old power imbalance between care providers and Black women, wherein medical professionals are authorized to deprive individuals of the services that they need, even when the results, statistically, prove fatal. For instance, though Black women are three times as likely to die during childbirth than white women, and 3.5 times more likely to seroconvert, no substantial changes have been made to redress these outcomes.
A Higher Standard
Blackstock believes that these problems are a reflection of the same biases that society holds against Black women.
“Health care providers aren’t any different from regular people,” she says. ‘But they need to be held to a higher standard because the interactions they have with patients—and the asymmetry in power dynamics—can have detrimental effects on people.”
That’s one reason why she formed Health Justice, an organization dedicated to breaking down inequities, helping institutions to transform “their organizational culture and extending that to the work that they’re doing in the community.”
Blackstock says that her work is informed by the understanding that many “Black women are the heads of their households and primary caregivers and often have to sacrifice our own health for our families.” She also noted that the first step to accomplishing this mission is learning what type of support Black women need to take care of themselves—childcare, hours that fit difficult job schedules, assistance with navigating insurance—so that they can show up to medical appointments in the first place.
“When we lead with equity, everybody wins,” Blackstock says, while noting that equity starts with access. That’s why going the extra mile for Black women is worth it. Care providers can meet that mandate by listening to what Black women are saying without judgment, asking Black women to confirm that their needs are being addressed, and following up with additional health care information, even if it feels extraneous.
That level of care grants people the comfort they need to open up, demonstrates to Black women their voices matter, and helps medical providers to do what they are here for: to save lives.
Visit Health Justice for more information about Oni Blackstock’s work in breaking down inequities and eliminating oppression from the health care system.