Patients should feel safe to discuss any aspect of their sexual health with their care providers. Whether it is an unexpected discharge, a hard-to-explain injury, or a request for sexually transmitted infection (STI) testing, medical professionals should be available to offer their patients the information and services they need. Unfortunately, that is not how it goes for many Black women in this country when it comes to HIV, particularly when they are older.
Case in point: Though they only make up 13% of all women in the U.S., Black women accounted for 57% of all women who tested positive for HIV in 2018. In addition to this disproportionate representation, what makes this statistic so alarming is that most Black women are unaware that they are at risk for seroconversion or that pre-exposure prophylaxis (PrEP) is available to protect them from HIV.
According to data published on the website of the Centers for Disease Control and Prevention (CDC), in 2016, less than 1% of Black women had been prescribed PrEP. When discussing Black women and health disparities, it is common to point to medical racism as the root of all evils. But one does not have to solve racism in order to get PrEP to Black women. All that requires is for medical professionals to do their jobs by informing Black women that the drug exists.
You Can’t Ask for Something You Don’t Know You Need
While the onus is frequently put upon Black people to advocate for their own health, Leisha McKinley-Beach says, “You can’t ask for something that you don’t know you need.”
McKinley-Beach, an Atlanta-based activist who has been fighting HIV and AIDS for nearly 30 years, says that if “providers are committed to ending the epidemic in Black communities, they’ve got to find ways to ensure that Black women are informed and aware that PrEP is for us.”
For Susan Cole, the patient information manager of Aidsmap, that means that providers and pharmaceutical companies need to drop the excuse that Black women are “too hard to reach” and create targeted messaging that speaks to them.
McKinley-Beach agrees. She says, “What works for one population doesn’t work for all populations” and notes that pharmaceutical companies have “deep pockets to pay for effective media about PrEP that reaches the same-gender-loving community where they live, so they can do the exact same thing for Black women; because the women that I speak with look at those commercials and say, ‘I didn’t know that was for us.’”
While watching a recent commercial for PrEP about “being on the pill,” a Black woman in her 50s shared with McKinley-Beach that she thought it was about birth control and dismissed it because “she could not have kids anymore.”
This lack of consideration for women and marketing has even affected trials for newer drugs. According to ProPublica, Black people accounted for less than 5% of the subjects in 24 of the 31 cancer drugs that were approved between 2015 and 2018. That’s similar to what happened with Descovy (emtricitabine/tenofovir alafenamide), Gilead Sciences’ latest PrEP formulation, because the manufacturer failed to include cisgender women in trials for the drug. Though no cisgender women will be able to use the drug, Black women will suffer more from this exclusion than any other demographic.
Bad marketing and trial planning side, none of this explains why the medical profession has consistently failed to address HIV and PrEP with older Black women.
Willful Refusal to Communicate
While researching this article, TheBody spoke with 20 Black women between the ages of 38 and 64 from all over the country. None of these women knew that PrEP was available for them or had ever heard about it from their doctors. Each woman who spoke to TheBody for this article shared that she saw her primary care doctor and OB-GYN separately, at least once a year.
A 2018 survey conducted by Black AIDS Institute at the Essence Festival—which markets itself toward and includes mostly Black women as attendees—found that nearly half of respondents had never heard of PrEP or discussed it with their doctors.
McKinley-Beach, who consulted on these surveys in 2015 and 2016, says that women who knew about PrEP shared that they’d learned about it the previous year, from the Black AIDS Institute’s survey.
“The CDC shared so many resources with each state,” McKinley-Beach says. “If communities are being educated, then this is a sign that our population got overlooked.”
This despite the efforts of 50 experts in HIV and women’s health, who in 2013 pushed for public health agencies across the country to promote PrEP among women. Though Planned Parenthood of Greater New York launched a campaign promoting “PrEP for Women Too” in late 2020, that message has yet to take hold in the national media or in medical facilities.
Sex, Shame, and Older Black Women
Zyra Gordon-Smith, D.N.P., APN, FNP-BC, AACRN, AAHIVS, an assistant site medical director at Howard Brown Health in Chicago, says that part of this poor communication stems from stigma about sex. She shares that she has spoken with many medical professionals who assume that it is unnecessary to discuss sexual health with postmenopausal women.
She has heard colleagues say, “That’s my grandma; I can’t imagine her having sex.” To which she responds, “But grandma is getting it in just like everybody else.”
Gordon-Smith says the attitude is, “‘We don’t have to talk about contraception because you’re not worried about the risk of pregnancy.’ But the risk of acquiring HIV can be even greater for older women because they may not be engaging in protective sex with condoms.” Indeed, studies have found that STIs are on the rise among older people. In fact, people over the age of 50 accounted for 17% of all HIV seroconversions among Black people in 2018.
“And for postmenopausal women with decreased estrogen and increased vaginal dryness,” Gordon-Smith says, “there can be an increased risk of having tears, which makes one susceptible to STIs.”
Perceived and Actual Risks
Gordon-Smith also looks at the issue of perceived risk, which fails to take the behaviors of women’s partners into account. It must be noted that 92% of Black women living with HIV acquired it through heterosexual contact.
Gordon-Smith says, “Many Black women are not thinking they need PrEP because they don’t sleep around. But that doesn’t say anything about their partners.” This calls the concept of monogamy into question. When asking her patients about the number of partners they’ve had—within the past three months and then the past year—she takes care to explain that even if one is monogamous, if she has had multiple partners within the year, “she definitely increases her risks,” and should consider PrEP.
But one woman who spoke with TheBody revealed that even though she continued to come visit her doctor for treatment for chlamydia—which her boyfriend continued to reinfect her with—her doctors “never talked to me about PrEP even though you’re telling me that having an STD means I was more at risk for HIV.” This is because the same circumstances that put one at risk for an STI put them at greater risk of getting HIV. People who have tested positive for STIs are two to five times more likely to seroconvert than people who have not been infected with STIs.
Cole says that this problem is compounded by medical providers who improperly discourage women from getting tested for HIV or going on PrEP even when they request it. McKinley-Beach has encountered women who experienced this discouragement. “One woman was nearly talked out of going on PrEP by a nurse practitioner who told her, ‘You’re so beautiful. Why would you throw your life away for someone who has HIV?’”
The attitude is an antiquated holdover that some activists continue to promote. They trumpet abstinence and condom adherence as the only suitable methods for fighting HIV and derisively refer to people who use PrEP as “Truvada whores.”
“Sometimes there is judgment of women who want to go on PrEP,” Cole says. “Where they worry that their doctor is going to think ‘I’m a slut.’ It could be that a health care professional is projecting those attitudes on their patients, and we know that shaming never works in public health messaging.”
What does work is clear, open, and honest communication. That means sharing information with Black women about facts, figures, risks, and options. Cole says this includes pointing out that one does not have to go on PrEP “indefinitely. Health care professionals need to get the message across that this is something that might be helpful for you at this point in your life, but you could come off of it, and then you might be able to go back on it again as you see fit.”
Cole, Gordon-Smith, and McKinley-Beach all agree that effective messaging is key and believe that every person interested in protecting Black women from HIV should promote informational campaigns on television, print media, movies, in clinics, and in schools.
Having the option to decide what works for them delivered through judgement-free and clear messaging: That’s what Black women need when it comes to PrEP and fighting HIV.
For more information about PrEP, visit Planned Parenthood of Greater New York’s “PrEP For Women Too” campaign or read TheBody’s write up about the program to learn how it was put together so that it spoke to Black and Latinx women.