Though HIV infection rates are decreasing across the U.S., Black women are still being pummeled by the virus. Yes, Black women saw a 21% decrease in seroconversions between 2010 and 2016, but they also accounted for 57% of new HIV infections among all women in 2018. Keep in mind that Black women make up less than 7% of the population in this country.
When looking at why this disparity persists, it is important to consider that 92% of these seroconversions occurred through heterosexual sex. This even though pre-exposure prophylaxis (PrEP), which protects people from acquiring HIV, has been available on the market since its approval in 2012.
But PrEP is only effective when it is taken, and despite its availability, numerous studies have shown that Black women aren’t being prescribed or even informed about the drug’s existence. According to Susan Cole, the patient information manager of the U.K.-based charity Aidsmap, this is because “messages around PrEP aren’t being directed to women. They are being targeted towards gay men.”
“I think that’s very much the case for me as someone living with HIV,” she says. “Initially, when I first asked for a test, I was told that I wasn’t the sort of person that would get HIV, so there was no point in actually testing for it.” Cole says in addition to ignoring Black women, medical institutions excuse their inaction by blaming Black women for being a “hard-to-reach group.”
But that is not the case, Cole says. “The problem lies with the people who are trying to get the messages across. They’re not targeting their messages for women.”
Maya Merriweather, the project manager of Black AIDS Institute—an organization dedicated to eliminating HIV—agrees. She says, “Information about PrEP is being withheld from Black women.” Merriweather came to this conclusion after her second year of surveying Black women at Essence Festival, an annual music festival produced by Essence magazine that is geared towards Black women.
During her surveys, Merriweather says that she asks attendees if they are familiar with PrEP and gives them an “elevator speech about what it does” if they are not. She has found that “80% of participants had never heard about PrEP whatsoever, but the vast majority identified that it was a great fit for them and their sexual health.” In addition to medical neglect, Merriweather says that this silence “also speaks to whom PrEP is being marketed towards. It’s not Black women; it’s, by and large, gay white men.”
Different Lives, One Common Experience
Charlene Carruthers, a Black queer feminist activist and founder of Chicago Center for Leadership and Transformation, says that PrEP has “never been offered to me or mentioned in a doctor’s office, and I go to the doctor annually.” Carruthers, who found out about PrEP from other activists, believes that the decision to ignore her as a candidate for PrEP is part of a long history of “being locked out of access to health care that Black women have been subjected to by the medical system.”
Ta’Rajee Omar, who recently spoke with TheBody about her experience with medical racism in Detroit, says that she learned about PrEP from television commercials. But even after being improperly told by her ophthalmologist that she probably had HIV (she does not), Omar says that “No doctor has said anything to me about PrEP. Even when I was younger and dating different people and obviously should have known about it.”
Three additional Black women with whom TheBody spoke revealed startlingly similar circumstances to Carruthers and Omar. All three women asked that their names be withheld.
Peta, an educator in Brooklyn, New York, says that she had never heard of PrEP prior to our conversation, despite visiting her doctor every year. Nicky, a public speaker based in Saratoga, New York, says that she recently heard about PrEP because of commercials on television but “had no idea that it might be for me.” After revealing that she was also unaware of what PrEP was, Tonie, a yoga teacher based in Pittsburgh, explained that she was angry that she didn’t know “the drug was an option for me.”
For Tonie, this new PrEP awareness is especially embittering because of what she believes it says about how Black women are viewed by the medical industry; indifferently. She admits that she stopped seeing a doctor regularly after she went off of birth control two years ago. “But you’re telling me that PrEP has been around for at least six years,” she says. “If I’m at risk, shouldn’t I at least have known about it?”
Peta says that she is surprised to only be hearing about the drug now because her relationship with her gynecologist is defined by candid conversations about her sex life. “I’m very open with her,” Peta says. “She gives me condoms, and I get an HIV test whenever I go in.” Given their relationship and her own risk profile, Peta thinks it is “odd” that PrEP has never come up.
She says, “The first question that comes to mind is, ‘Why?’ And the answer that comes to mind is that people don’t give a fuck about Black women.” After further reflection, Peta decided that her gynecologist “made an assessment that I’m not at risk. Instead of applying a ‘universal design approach,’ she has decided that there is nothing that a well-polished Black woman is at risk for.”
It’s a dangerous assumption with easily preventable, though potentially lifelong, consequences for many people.
Medical racism is a fact of life for many Black women in this country. But even outside of the patient-provider relationship, Merriweather says Black women are not being listened to or given the medical care that they deserve. “It’s a trickle-down effect from slavery to medical experimentation, and we’re seeing it in our modern-day provider relationships,” she says.
Her advice for anyone who feels that their medical care is being neglected is to “be prepared to do a lot of the lifting that the medical team should be doing. And I would like to drive home the point that that’s absolutely unfair, and that not everyone has to do that.”
Carruthers agrees. She says that though it is an unfair burden, “When it comes to my reproductive health care, I often times go ready to fight to make sure that I have the information that I need.” This includes holding doctors accountable by asking questions over and over again until she receives the information that she needs and recognizing that her doctors are providing her a service; if she is not pleased with that service, she can take her business elsewhere.
Universal Design Approach
Beyond the business aspect, providers also have a stake in providing superior care. Given the ongoing reality of medical racism, a good place to start with PrEP and due diligence is a universal design approach.
Universal design creates products, services, and policies that are accessible to people with a diverse range of abilities, needs, and backgrounds. A common example is having a wheelchair ramp at a restaurant. While it is possible that only 1% of a restaurant’s customer base may need to use that wheelchair ramp, it is provided to ensure that everyone has equal access (and to avoid lawsuits).
With that in mind, medical providers should stock their waiting rooms with posters and pamphlets that include the latest statistics about the disproportionate effect that HIV has on Black women as well as how PrEP can protect them. Looking at establishing a risk profile with patients, Nicky communicated, “The conversation should go like this: ‘Are you Black? Are you a woman? Do you have sex with men? Then you should know about PrEP and how it could protect you from HIV.’ I know I’d respond to that and see that my doctor was trying to make sure that I had everything I needed to know to protect myself. It might even make me think about the things I was already doing to protect myself.”
Given the current system of neglect, medical providers need to bend over backwards to ensure that Black women are armed with the information they need to protect themselves from HIV. It’s an essential part of ending the HIV epidemic—and the right thing to do.