In the United States, Black women are four times more likely to die in childbirth than white women and much more likely to have late cancer diagnoses than women of other races. While hospitalized, they are less likely to receive medications to ease acute pain, and at only 13% of the U.S. population of women, Black women account for 58% of new HIV cases among women.
These statistics, shocking as they are, merely reflect the institutional disregard that Black women have for centuries faced within the health care system. To curb these statistics and protect Black women, public health approaches must be girded and supported by intersectional approaches created specifically to tackle the systems of oppression that influence Black women’s daily realities.
Black Women Are Overlooked in the Fight Against HIV
With the advent of lifesaving therapeutics, HIV has become a managed chronic disease within the population that it initially devastated most: gay white men. Thanks to robust legislative measures and targeted public health campaigns, future generations of gay white men slowly began to envision their lives outside the shadow of the HIV/AIDS epidemic. But as new therapies are approved and distributed, these historical perspectives of HIV stifle and disincentivize wider use of these lifesaving interventions. Historical racial and economic practices coupled with outdated messages about prevention and protection render the sense of urgency to protect Black women nonexistent, all while the “silent epidemic” of HIV rages through Black communities worldwide.
Susan Cole, a U.K.-based HIV activist and award-winning writer who has been advocating for the rights of people living with HIV for two decades, had a harrowing experience of discovering that she was HIV positive after marriage. “It didn’t cross my mind that I could be positive for a moment because I really felt, at the time, that HIV was something that just happened to gay men,” said Cole. Despite the availability of effective treatment at the time of her diagnosis, Susan’s physician gave her a grim outlook: seven years to live. “I felt that he was a doctor, so he must’ve been right,” said Cole. “I even asked for an HIV test with another doctor a few years earlier, and the doctor said, ‘Oh no, dear, that test is not for you.’ That experience taught me that knowledge is the most empowering thing that we can give to Black women.”
In the U.S., 92% of all new HIV infections among Black women are acquired via heterosexual sex. Yet, at the same time, Black women underuse routine testing and interventions like PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis) at astonishing rates: further proof that medicine frequently betrays Black women, even during the most routine care. In fact, in many states, heterosexual Black women and Black women in monogamous relationships are not considered “high-risk” and, because of that misconception, often are not screened for HIV and sexually transmitted infections (STIs) during annual checkups. In addition to this opt-in approach, Black women are in many cases less likely to speak up and challenge medical providers due to their experiences of being belittled and discriminated against in health care environments. In addition to medical mistrust, Black women also experience medical providers’ distrust and skepticism of their symptoms at a time when they are most vulnerable.
In line with a structural shift, an ideological shift needs to ripple through communities of Black women. We are not the burden; it is the system that is burdening us. “Knowing our rights curbs discouragement and helps us build the strength to challenge what some medical providers tell us,” said Cole.
Being a Black Woman Too Often Means Having to Self-Advocate
Eradicating HIV within our communities will require multidisciplinary approaches, including reclaiming our power by talking candidly to our providers. If you are a Black woman, and your doctor doesn’t mention incorporating HIV prevention into your care, these six questions can help guide the conversation during your next appointment.
- Can I please have an STI test? Although 84% of respondents in a 2019 Kaiser Family Foundation (KFF) survey reported that they were very or somewhat comfortable discussing STIs with their health provider, it is not common practice in all states that medical providers automatically test for HIV and other STIs. Given that your medical provider by law may require either verbal or written consent from you to take a test, the decision is largely left up to the patient. If you forget to ask your medical provider, you can and should still request a test by asking another medical professional such as a nurse or medical assistant for help. Additionally, most city health departments have STI testing available via appointment.
- What are my rights concerning my sexual and reproductive health? Advocating for yourself as a Black woman means initiating candid and confidential conversations about your sexual and reproductive health. Your rights concerning your sexual and reproductive health may include updates about your abortion access, the types of contraceptives that would work best for you, where and how you can access contraceptives, remote or telemedicine services available to you, and financing options that can help support your decisions.
- Do you treat other Black women in your practice? Knowing that you are in culturally competent hands improves your sense of safety and confidence as a patient. You are allowed to ask your provider about the communities they serve and their experiences in treating members of your gender, race, ethnicity, economic status, and religion. Issues like religious stigma, concentrated poverty, and the health care of incarcerated persons are often unique to Black communities. Asking this question may open up a conversation with your medical provider about services and resources tailored to your needs.
- Am I a good candidate for a PrEP or PEP prescription? In 2019, California was the first state in the United States to make PrEP and PEP pills available without a prescription. For the remaining states, patients are still required to show a provider’s prescription in order to access HIV prevention medications. Both drugs are highly effective, with PrEP being upwards of 99% effective when taken as prescribed. Patients can be prescribed PrEP without knowing their HIV status, although it is recommended that patients have an HIV-negative test result at least two weeks before beginning PrEP.
If you have questions or concerns about side effects and drug interactions, or the cost of PrEP or PEP—before or after accepting a prescription—be sure to bring those up to your doctor.
- Should I be in pain? There exists a white supremacist hierarchy of care that deems the pain and suffering of Black women unworthy of attention or care, even to Black women themselves. It is a tactic rooted in medical scarcity (medical providers are too busy to give Black women special attention), racist objectivity (pain has to look a certain way), and medical paternalism (Black women don’t know the pain that they are feeling). “It’s a matter of, in terms of HIV treatment, [Black] women saying, what are my options?” said Cole. “And knowing that if they are experiencing side effects, they don’t have to suffer in silence.” Our lives are not defined by pain, and Black women’s medical care and treatment should not be either.
- Are you sure? “To Black women, doctors are often seen as an authority,” said Cole. “There are patriarchal differences that make it seem like it is disrespectful to challenge your doctors.” In any patient–medical provider relationship, while the provider offers expertise, the patient knows herself best and should feel empowered to ask any and all questions. Asking, “Are you sure this is the best treatment for me?” or “What are some other options?” may help clarify any doubts you may have about a diagnosis or medication, and ensure you’re taking the right steps for your care.
Beyond these questions, a good provider will be open to having honest conversations about all aspects of your health. If your experience is anything less, you should feel emboldened to find a medical provider whose skill and bedside manner you can trust.