Pre-exposure prophylaxis (PrEP) is a drug that protects people from HIV. Though this has been known by scientists and health care professionals for over eight years, many Black women are unaware of the drug or about their own vulnerabilities to the virus.
According to the most recent figures on HIV infections in this country, Black women account for 57% of all seroconversions among women, even though they only represent 13% of the total population of women in the United States. And of those HIV transmissions, 92% occurred through heterosexual sex.
As part of an ongoing project looking at the relationship between Black women and PrEP, TheBody spoke with 20 Black women between the ages of 38 and 64 from around the country. Of those women, only four had heard of PrEP, all of them through television commercials. None were aware of HIV’s disproportionate effect upon Black women. All of these women responded that they wished that their doctors had discussed PrEP with them.
This informal survey tracks with the results of numerous studies about PrEP awareness among Black women. After studying data from the 2016 National Survey on HIV in the Black Community, a report published in April 2020 found that of 522 Black women surveyed across the United States, only 14% knew that PrEP existed.
A study published in JAIDS found that even when PrEP campaigns targeted cisgender women and heterosexual men, knowledge of PrEP remained low. In the study, 83% of 370 nonpregnant, HIV-negative women in Chicago were Black, while fewer than a third had ever heard of the drug.
But whatever their engagement with HIV preventive care, Black women report overwhelmingly that they believe it is marketed exclusively toward gay men. Despite the failure of marketing and messaging, Susan Cole, the patient information manager of Aidsmap, a United Kingdom–based charity that offers HIV services, says that drug companies and care providers repeatedly punt on the issue by labeling Black women as “hard to reach.” According to Maya Merriweather, a project manager at Black AIDS Institute, this amounts to “withholding information from Black women.”
That’s why Leisha McKinley-Beach, a longtime AIDS activist, says that it is time to “normalize our response to HIV.” This means removing the puritanical stigma from how HIV is perceived so that it is treated like any other health condition, such as a car crash injury or the common cold. Society’s attitude toward breast cancer sets a precedent for her belief.
Breast cancer has long been the most common form of cancer that women experience in the world. But prior to former first lady Betty Ford’s disclosure about her battle with the disease, in 1974, discussing it was considered taboo.
McKinley-Beach recalls that when she was a child, “Black families didn’t want to disclose that they had a loved one who was battling breast cancer. But fast forward 30 years later, and the entire country turns pink in October for Breast Cancer Awareness Month. You even see NFL players with pink gloves or pink socks showing their support for breast cancer awareness and breast cancer research.”
McKinley-Beach notes that this didn’t happen overnight. “It started with raising awareness and finding champions that talk about being survivors. HIV has done that to some degree, but there has to be more of it in Black communities.”
She has a good point. Thirty years ago, Magic Johnson’s HIV disclosure was considered a game changer that showed the world the disease was not a death sentence. Effective public-information campaigns about the virus among Black people have stalled since then.
According to the Centers for Disease Control and Prevention (CDC), though Black people have the greatest need for PrEP, in 2016, 69% of all PrEP prescriptions that recorded racial data went to white people; 13% went to Latinx people, while 11% went to Black people. Of the 78,360 people who were prescribed PrEP in 2016, 5% were women, and fewer than one-third of those women were Black.
The pervasive view about HIV is that it is a “gay disease.” For Whitney Sewell, Ph.D., M.S.W., a postdoctoral fellow at the Department of Population Medicine at Harvard Medical School and Harvard Pilgrim Health Care Institute who specializes in disseminating information about PrEP among Black women, this failure in messaging has everything to do with HIV stigma and a lapse in the continuum of care.
A continuum of care includes the full range of health services that patients receive. So that instead of talking about birth control, shortness of breath, difficulty sleeping, or HIV with different individuals, one can turn to their primary care provider to discuss all of their needs. According to Sewell, Black women rarely discuss their sexual and reproductive health needs with their doctors.
During her time as a Ph.D. student, Sewell founded and directed a community advisory board in St. Louis, Missouri, that focused on creating biomedical interventions among Black women of all backgrounds and ages.
Sewell says that in addition to dispelling false notions about who was affected by HIV, she also counseled providers around their apprehension over speaking to Black women about PrEP. She found that providers suggested that it was seen as potentially offensive and said there was a lack of clear guidelines around who should get information about PrEP. Instead, it’s left to the discretion of women to decide which individual providers they choose to speak about HIV prevention and PrEP with.
Sewell says the problem with this approach is that it makes Black women vulnerable to social biases, including flawed perceptions about who is at risk for the virus.
Sewell believes, “The fear, shame, and homophobia associated with HIV is a huge barrier to providing Black women with the proper education and resources that they need to protect themselves; there is still this idea that HIV is a ‘gay cancer’—even among health care providers.”
I asked Sewell if she thought that creating a new risk profile for HIV and Black women would solve this problem. Risk profiles are catalogs of information created by analyzing existing statistical data and notes collected from patient questionnaire forms and in-person observations. They can be used by care providers to determine how likely a patient is to develop a specific disease or condition. She quickly dismissed the reliance on risk profiles as “dangerous in general.”
But Sewell says they hide an even bigger problem. “When we’re talking about PrEP care and access, we’re not just talking about Black women and statistics or prescriptions; we’re talking about the continuum of care, which needs to be incredibly robust. It starts with rapport, then generating knowledge, understanding, and comfort around these issues. And if we operate around checklists, we’re never going to normalize, create access, or debunk and dismantle some of these barriers that exist within central health in general.
“I think that relying on profiles is dangerous,” Sewell says. She agrees that they can be useful when determining who is most at risk, such as prioritizing vaccinating older people with less robust health systems during a pandemic. She also cautions that conversations about sexual health with women have to become normalized to include contraception and PrEP.
Sewell emphasizes that proper care is not saying, “‘Because you’re having sex, we’re writing you a prescription.’ It’s saying, ‘Because you are someone who has the opportunity to expand into different types of sexual lifestyles by your choice, it’s my obligation as a provider to provide educational resources.’”
The difference is that information is made available automatically rather than relying upon a doctor’s potentially faulty misreading about who needs potentially lifesaving information based upon how an individual looks or speaks, because HIV does not discriminate based upon race, class, or educational level.
This also looks at the abuse of power that occurs when doctors with terrible bedside manners are excused because society has decided that the cost of excellent care means suffering through antisocial behavior; even as the resultant lack of communication deprives patients of potentially lifesaving information. Sewell acknowledges that this is an ongoing problem.
“This is a social-justice issue,” she says. “And it’s extremely polarized when it comes to sexual health care. Medical education is designed so that it will not disrupt political systems or stances, especially those that work against folks who are historically and contemporarily oppressed. So the issue of unpleasant bedside manners or providers feeling uncomfortable with discussing sexual health for whatever reason is an issue of education and training.”
But if this is the same educational system that bestows degrees upon doctors who believe the racist myth that Black people have thicker skin and are less sensitive to pain than white people, what does that say about doctors who were trained to believe that homosexuality is a deviant medical disorder?
The American Psychiatric Association (APA) didn’t remove the diagnosis of “homosexuality” from the second edition of its Diagnostic and Statistical Manual (DSM) until 1973. At the time, 5,854 psychiatrists voted to remove homosexuality from the DSM, while 3,810 voted to retain it. As a compromise, homosexuality was removed from the DSM but listed as a “sexual orientation disturbance” for people “in conflict with” their sexual orientation. It was only in 1987 that homosexuality was entirely removed from the DSM.
Meanwhile, the World Health Organization (WHO) waited until 1990 to remove homosexuality from its International Classification of Diseases, and until 2017, WHO still listed a diagnosis related to being queer: “ego-dystonic sexual orientation,” wherein a person “wishes [their sexuality] were different because of associated psychological and behavioural disorders.”
But beyond backward attitudes about sexual orientation, Sewell also says there is “back and forth in woman’s health between infectious-disease physicians and gynecologists over who should be assigning PrEP.” Sewell says that this creates “a huge gap over who is even discussing HIV with women in general. When it comes to sexual and reproductive health, I don’t think residents are receiving the type of comprehensive education and guidance that they need in order to serve diverse populations.
“These are major stakeholders when it comes to implementation,” Sewell says. “All paths lead back to providers, so the pressure should be put on them to step up in a meaningful way. And I don’t mean just infectious-disease doctors or gynecologists; I mean the entire field in general, from the very start of medical education.”
But until those changes are implemented, Sewell says that “Black women will continue to carry an invisible burden and be forced to give something or demonstrate something for the provider to actually give them the resources that they need.”
When those resources are not being given, Sewell says that it is essential for patients to advocate for themselves in the moment. She acknowledges that this is an unfair and emotionally exhausting burden that Black women are forced to bear. She says that one way of navigating those instances is “continuing to ask why.
“There’s something about challenging from a place of decorum that really pushes people into a place where they really have to give the explanation.” And if the explanation doesn’t make sense, Sewell says that it is always OK to ask why again. And there’s always an additional “why” that is attached to the previous “why.” Sewell says that when providers have tried to push or deny her a service, she sits and nudges them, repeatedly.
“Why is that? What would make you say that? Why would that happen? Why would this be a potential outcome? Why would you encourage me not to do this? I’ve gotten comfortable with shooting ‘why’s’ out there; get comfortable with shifting the dynamic space. Do not be afraid to engage or interrogate your provider,” she said.
In addition to getting answers, Sewell notes that “you’ll start exercising that muscle and working your voice. I think ‘Why?’ really helps with folks who are kind of internal processors or don’t know how to confront situations because they are passive. But asking why gives everyone a chance to breathe, and it gives your provider a chance to sit back and completely re-explain.”
Most importantly, Sewell says that asking why gives patients a chance to check in with themselves and investigate whether their needs have been met. “After all,” she says, “that’s what they get paid to do. They get paid to answer your questions. So ask ‘why,’ and let it lead you to a place of empowerment; and own that place of empowerment, and go home and reassess your options.”