Women from racially minoritized groups are disproportionately impacted by HIV. In the United States, Black women account for nearly 60% of new HIV infections in women, despite making up only 13% of the population of women. And in the United Kingdom (UK), based on 2017 data, Black women represented 53% of new HIV diagnoses among women—an alarming figure in that Black people make up just 3% of the UK population.
On either side of the Atlantic, the most common mode of HIV transmission for women is heterosexual contact. Globally, pregnant women are consistently offered an HIV test as part of prenatal screenings. In fact, the World Health Organization (WHO) encourages universal approaches to prenatal HIV testing, quality perinatal health care, and for the elimination of vertical, or mother-to-child, transmission of HIV. But, too often, that means women who will never become pregnant or are no longer of childbearing age are less consistently offered an HIV test.
What then is being done within health care and communities to prevent women, in all of their diversity, from acquiring HIV? TheBodyPro spoke with three women of color—an HIV physician, a public health researcher, and a sexual health advisor—on the role of sexual health and non–sexual health specialists to improve services and experiences for women. They also discussed the ways racism, sexism, and stigma manifest and create barriers to competent and compassionate care for Black women and women of color.
Improving PrEP Messaging and Delivery
The U.S. Centers for Disease Control and Prevention (CDC) published data showing that in 2016, among women, Black women represented 26% of women prescribed pre-exposure prophylaxis (PrEP), compared with 48% white women, despite, again, accounting for a disproportionate indication for PrEP use and risk of HIV infection.
And in a 2020 Chicago study, less than a third of participants, the majority of whom were Black cisgender women, reported having heard of PrEP. However, once they were informed, more than a quarter shared their intent to start using PrEP. The study also highlighted that the participants typically did not seek health care in settings focused on sexual health—they preferred discussing sexual health with their primary care doctor, rather than with a sexually transmitted infection (STI) or HIV specialist.
Similar challenges exist in the UK, said Rianna Raymond-Williams, M.Sc., a health advisor and founder of Shine ALOUD UK, an organization that works to tackle sexual health inequalities in marginalized communities. She is also the co-editor of the anthology, More Than Talk: Perspectives of Black and People of Colour Working in Sexual and Reproductive Health in the United Kingdom. In the UK, there is “a lack of campaigns that directly speak to and center Black women,” said Raymond-Williams. “Therefore, it seems as though HIV is something that impacts other communities.”
As a freelance writer, Raymond-Williams writes extensively about ineffective PrEP messaging and how that leaves Black women vulnerable and less informed about their prevention options. “As a Black woman who is both a service user and a service provider, I understand that when some Black women are offered an HIV test by providers, they may feel they are being targeted,” said Raymond-Williams. “Or that assumptions are being made about their body and sexual behavior, rather than seeing an HIV test as part of the full sexual and reproductive health service offered alongside managing or treating [yeast infections], accessing contraception, and getting sexual health advice.”
That’s where structurally competent providers come in, said Whitney S. Rice, Dr.P.H., M.P.H., an assistant professor at the Emory University Rollins School of Public Health in Atlanta and the director of the Center for Reproductive Health Research in the Southeast (RISE). “Clinicians and other providers have important roles in providing health care in a way that is compassionate, nonjudgmental, and respects patient autonomy,” said Rice. “When women receive this kind of patient-centered care, they report better health care satisfaction and outcomes” across different health conditions.
According to Rageshri Dhairyawan, M.B.B.S., FRCP, a UK-based sexual health and HIV physician at Barts Health NHS Trust in London and an honorary senior lecturer at Queen Mary University of London, health care providers need to be more flexible in terms of the services they offer. Dhairyawan holds several governance roles in not-for-profit organizations committed to improving sexual health outcomes for women and people of color. “We need to make ourselves more approachable—for example, having flexible clinic hours, making sure that people know that we exist and what we do, and that what we do is free,” she added.
In the UK, HIV care (including PrEP, testing, and treatment) is free, regardless of a person’s immigration or income status. Despite this, there are significant barriers for migrants accessing health care in the UK, according to a recent National AIDS Trust report on HIV and migration. In 2019, 62% of all new HIV diagnoses were among migrants, and of this number, 33% were female.
Moreover, about 58% of all new diagnoses among migrants born in Africa were in women. The report states that half of all migrants diagnosed with HIV in the UK in 2019 likely acquired HIV in the UK. The report also named governmental policies introduced in 2012—considered to have created a “hostile environment” for migrant populations—as significant barriers for accessing health care. Among the report recommendations, the National AIDS Trust calls for an end to data sharing between the NHS and Home Office and a review of primary care registration models and practices to gain a better understanding of why migrants face difficulties accessing care.
It’s About the Quality of Choices, Not Just Risk
Real-world experiences impact women’s decisions around HIV prevention and their ability to make them—and health care providers have a responsibility to acknowledge and appreciate that. As Dhairyawan explained, it is critical that health care providers understand what is “surrounding [women], what’s outside, what is their life like, what is it that’s preventing them from doing this, and understanding that there are structural issues that are impacting on the person in front of us.”
Furthermore, it is important that clinicians take a structural approach to patient care and not just an individual behavioral approach, added Dhairyawan. “One, it’s really important to empower our patients, but also be aware about what the limitations are, which may not be because of them, [but] because of the structures around them.”
According to Rice, those structures that impact women’s individual access to HIV education, prevention, and care often include racial, gender, and income inequity and intersecting forms of stigma and discrimination like racism, sexism, classism, and HIV stigma.
Intimate partner violence is another factor that can impact women’s access to care. When Dhairyawan first learned of the link between intimate partner violence and sexual health outcomes, it prompted her and her colleagues to conduct a study asking all of the HIV-positive women in their care about their experiences. “We found a prevalence of 52%—so more than half of the women had experienced partner violence, which is twice the prevalence in the [UK] general population.”
Findings from this first-of-its-kind study in the UK resulted in a range of updates to UK sexual health screening care guidelines, including the British HIV Association pregnancy guidelines and British Association for Sexual Health and HIV sexual and reproductive health guidelines. Dhairyawan and colleagues in 2018 went on to conduct a narrative review highlighting the need for frontline workers to identify and respond to intimate partner violence among older women appropriately, which is an under-researched area. Although studies suggest that abuse declines with age, the narrative review found that only physical abuse declined; rates of non-physical forms of abuse remained similar across age groups. Moreover, frailty and other disabilities increased barriers to accessing support.
Dhairyawan stressed the importance of health care providers having referral pathways and ensuring that women are guided to support services. “There’s no point asking [about intimate partner violence] if you’re not doing anything about it,” she added. “You have to ask about it in a really sensitive way.”
She also highlighted the importance of collaborating with organizations working against gender-based violence and understanding how intimate partner violence increases the risk of acquiring STIs and HIV—and the importance of offering PrEP to those experiencing intimate partner violence. “Because, if you can’t tell your partner that you want to use a condom, because you’re scared of them, then [PrEP] is one thing they can do for themselves,” Dhairyawan added.
Recognizing the Power of the Community
History and racist and patriarchal legacies, too, have long restricted women’s choices and the quality of their choices. “Services also need to invest in understanding how colonial legacies and medical racism has impacted Black women accessing sexual and reproductive health services,” said Raymond-Williams. She added that, too often, these issues are overlooked. “There needs to be a better understanding and awareness of how the intersections of race, class, gender impact Black women’s access to care, as well as how these intersections created compounded levels of discrimination.”
One approach shown to improve understanding and awareness is collaborating with community-based organizations, such as SisterLove, Decolonising Contraception, and PrEPster’s MobPrESH program. Peer-led interventions have been shown to improve awareness of and access to PrEP; however, much of this has been evidenced among men who have sex with men (MSM).
MobPrESH (Mobilising for PrEP and Sexual Health) was established to recognize that women have been far less involved in such activities. The program was founded to train and support peer mobilizers for PrEP across three UK cities. MobPrESH prioritized recruitment of those most affected by the epidemic, specifically Black and other women of color (trans and cisgender), migrants, and sex workers. The qualitative evaluation of the project found mobilizers “were highly enthusiastic about MobPrESH and many felt that their knowledge and confidence had grown considerably through their participation.” The report also highlighted recruitment barriers created by funding restrictions limiting the ways in which peer mobilizers could be compensated and the impact of short-term funding cycles on sustained activities.
Finally, shared decision-making—a collaborative process intended to develop a treatment plan that considers both the patient’s preferences and the health provider’s recommendations—between Black transgender women and health care providers has also been shown to empower engagement around HIV prevention. In fact, a study published in the journal Culture, Health, & Sexuality in May found that shared decision-making around PrEP use led to better communication and less stigma and built trust within the patient-provider relationship.
For many providers, integrating shared decision-making into their experiences with patients, in particular Black women and women of color, must mean recognizing and addressing bias in medical spaces. “I think there’s something around the education of health care workers,” said Dhairyawan. “And making sure that we understand bias and that we’re able to reflect on it, and making sure our training teaches us about working with different ethnic minority communities and how we can change our practice to become more accessible and have better understanding.”
Editor’s note: In the spirit of full disclosure, it should be noted that Bakita Kasadha is a contributing author to the More Than Talk anthology, which is edited by Rianna Raymond-Williams and Lama El Khamy.