Pre-exposure prophylaxis, also known as PrEP, is the preventative medication used to reduce the spread of HIV/AIDS. It’s been available to people for almost a decade. But not everyone knows about it. Many people in the Black community, specifically Black women, either aren’t aware of PrEP or aren’t thoroughly educated on it. Therefore, many Black women aren’t taking advantage of its benefits as it pertains to HIV/AIDS prevention.
Why is that? Jaasiel Chapman, clinical research community educator at the University of Cincinnati College of Medicine’s Division of Infectious Diseases, blames the role that HIV stigma plays in the Black community.
“There is still misconception that only men who have sex with men or individuals who inject drugs are the only ones at risk,” he said in a phone interview. “Stigma blocks education, and that blocks prevention.”
And that message needs to reach Black women. Black women face greater health risks in many aspects, such as hypertension, stroke, heart disease, cancer, diabetes, sickle cell disease, and mental health. All of which are discussed often at doctor’s visits regularly. So why aren’t Black women made privy to PrEP resources?
“There just hasn’t been a true concerted effort to reach that population, which is extremely unfortunate because Black women are more than two times more likely to contract HIV,” Chapman said.
Despite Black women being at a much higher risk for HIV than the general population, they are often not asked about PrEP. According to the Centers for Disease Control and Prevention (CDC) and Healthy Women, while African Americans only make up 13% of the U.S. population, they accounted for 42% of the almost 38,000 new HIV diagnoses in 2018, the highest rate among all racial and ethnic groups. Black women accounted for 57% of the new HIV diagnoses among women. In addition, 58% of African Americans live in the Southern United States, and the most recent CDC statistics on this, which are from 2017, show that the South had the majority (51%) of new HIV diagnoses. And Black women accounted for the vast majority (67%) of the new HIV diagnoses among all women living in the South.
With statistics like these, PrEP should be a well-known topic of discussion. HIV diagnoses are such a great ordeal for Black women, and the risks are too high for PrEP not to be a known option. The fact that Black women are not made privy to such information is mind-boggling. If Black women can’t protect themselves, who will?
And why are Black women more susceptible? Poverty is a great issue, along with lack of health care resources, higher rates of sexually transmitted infections (STIs), not getting tested regularly, and stigma, the biggest deterrent of them all.
PrEP, however, is seldom a topic of interest, which makes awareness a scarcity. The lack of promotion of anything PrEP-related creates a barrier of negligence for prevention and treatment.
As a straight Black woman, PrEP isn’t something I’ve known much about. Many people think HIV is only an LGBTQ+ issue, which pretty much leaves straight people out to dry. As a heterosexual, I feel completely ignored and abandoned. My lack of knowledge about PrEP puts me at a greater risk of coming into contact with HIV, as the statistics show my being a Black woman in the South means the percentages are high. I would like to have the option of knowing what preventative measures I can take to ensure my safety and lifespan can be preserved.
Lack of knowledge appears to be the main reason Black women don’t take PrEP or even become interested in it. According to an NPR interview with experts working on this issue, Black women comprise 62% of all new HIV diagnoses among women—despite accounting for just 13% of women in the U.S. And yet, according to a study published in January 2019, knowledge about PrEP among women is low, particularly for Black and Latina women. However, the option should be available to all, so why isn’t it? If the target audience isn’t everyone, then how will Black women know how to adequately protect themselves?
According to Alicia Morehead-Gee, M.D., medical director of HIV prevention for AltaMed Health Services Corporation of Los Angeles, much of this has to do with how PrEP is marketed.
“Commercials target the LGBTQ+ community, and if Black women didn’t identify in that community, they didn’t think it’s for them,” she said. “The commercials aren’t tailored to Black women, especially straight women, so that’s a challenge; and additionally, it’s not coming up in the doctor’s visits, and some doctors don’t know enough about PrEP—and they need to learn more.”
As Morehead-Gee said, many doctors don’t know enough about PrEP, so who is supposed to guide me? What happens when the leader becomes the oblivious? When it comes to PrEP, I feel the same as I do about mental health: Everyone needs to be educated. If no one is aware, nothing changes. And if nothing changes, we’re all doomed.
But there are more hurdles than just bad messaging. In the Black community, unknown pills won’t be taken, and it’s especially hard to persuade people. Clinical trials often don’t include Black people, and racism among clinicians can sometimes leave Black patients’ concerns unaddressed. Fear of side effects also plays a role. For example, birth control alters hormones, makes you gain weight, elevates blood pressure, and causes nausea, headaches, and bloating. Truvada (emtricitabine/tenofovir disoproxil fumarate) and Descovy (emtricitabine/tenofovir alafenamide) can have serious (but very rare) side effects, including kidney problems and possible kidney failure, too much lactic acid in your blood, severe liver problems, and bone problems. In situations such as this, you have to weigh your options to determine if the side effects are worth it or if they do more damage than actually help.
Still, I have yet to see any real promotion targeted to Black women about HIV prevention. After doing personal research, I was able to find things out on my own, but not everyone has the time to do so.
Though the CDC and other agencies have tried to ramp up their prevention messaging to Black women, Chapman says it’s not enough.
“I have not seen it on the scale that is needed. It definitely has not happened in our region. Hopefully that changes, if we want to end the epidemic by 2030,” he said. To think that there is medication available to offset HIV, yet it’s not being utilized because very few know about it is so disheartening. I hope there is change well before 2030; if we have to wait that long, I can’t say that many people will survive.
Another reason Black women aren’t receptive to PrEP is the deep-rooted thought of invincibility. As a people, there’s a belief that “it won’t happen to me” and “I’m strong and resilient.” There’s also a notion of pills being a “white people thing,” and it’s associated with being weak and unable to handle life and its hardships. Due to our ancestral history of slavery, we are rooted in strength and perseverance, so there’s no way we’d ever succumb to man-made pills with risky side effects.
However, we’re in quarantine, and thinking like that is how a lot of people are losing their lives daily. So many people aren’t taking proper precautions, such as wearing masks. This mentality is stifling, and it’s what hinders us in the mental-health sector as well. There are countless Black people with mental illnesses who are told to “keep it in the family” and be “strong.” But little do they know, that’s not how mental illness works—and being “strong” won’t stop an episode or stop something from triggering you.
I dealt with the realization of AIDS at the age of 6. My best friend and grandmother passed from an AIDS-related illness. She contracted HIV from her husband. For me, getting HIV from your husband felt like the ultimate betrayal. What resonated most from that experience was, protection is necessary always. Regularly getting tested is imperative, because it’s truly life and death; and Black women are too valuable to perish from a preventable disease. PrEP is a form of protection that decreases the risks and lowers the chances of contracting HIV. If only PrEP were around and my grandmother was made privy to such vital information.
Ultimately, what is the endgame? PrEP should be taught in sex education, just as all major STIs should be. What can truly be done if Black women are the highest at risk for HIV and AIDS, yet have no clue as to the best preventative measures?
“I just want more Black women to know about PrEP, and it’s not their fault that they don’t know about it,” Morehead-Gee said. “It’s on the pharmaceutical companies and the health systems to educate people about it. So the first thing is people need to know that it’s an option for them. If we can allow them to know that it’s an option and they can make up their mind from there, then that’s the best situation.”
Options are indeed the best route as it pertains to PrEP. If Black women are allotted the option to educate themselves and decide how they want to go about their personal safety, the HIV numbers could arguably decrease for the better. Just like the current vaccine for COVID-19, some people are apprehensive, and others are for sure; but the common denominator is that everyone has an option to get the vaccination. All Black women need is awareness and a choice.
Ultimately, if you want to be safe and prevent yourself from contracting HIV/AIDS or any other STIs, the best thing to do is practice safe sex. That entails condoms (for women and men), birth control, PrEP, and in the times of today, being extra careful with who you share any time around because of COVID-19. Black women, research PrEP at your leisure, ask questions with your physician, get a second or third opinion before you start taking it, ask someone you trust if you think it’s for you. But whatever you decide to do, as always, consult with your doctor, and do it because you are practicing self-care.