Jeanine Santucci

It can be in a doctor’s tone when asking a routine medical question, or in the way a nurse raises an eyebrow. The stigma surrounding HIV can be exhausting.

For Angela Hodges, a 51-year-old D.C. resident, it led to initial denial of her status as HIV-positive after her diagnosis.

Hodges lives at Miriam’s House, a residence for women who are HIV-positive and experiencing homelessness.  The stigma has made it difficult for her to go to medical facilities. For example, Hodges described a conversation for an entirely unrelated surgery. The first question the doctor asked was, “How did you contract HIV?” Fear of judgment can deter people from having conversations about sexual health.

For Black women, and especially for those with low incomes or who are homeless, information about treating the symptoms or halting the spread of HIV has been lacking.

Support from organizations focused on community and advocacy eventually gave Hodges what she needed to invest in her self-care and emotional well-being, but it was not an easy path.

D.C. initiatives have gained ground in investing in Black women’s sexual health. They are led by policymakers like At-Large Councilmember Robert White, who recommended that D.C. invest in HIV prevention resources, and by organizations such as the M.A.C. AIDS Fund, which pledged $1 million to increase women’s access to an HIV prevention drug.  Increasing concern over the high rate of HIV infection among the city’s Black female population, who comprise one in five new diagnoses in the District, have fueled these initiatives.

Washington, D.C., has one of the nation’s highest HIV rates, and the fight to combat HIV has long been at the forefront of city government’s funding efforts. In 2015 Mayor Muriel Bowser announced the 90/90/90/50 by 2020 plan to ensure that by the year 2020, 90 percent of D.C. residents who are HIV-positive will know their status, 90 percent will be receiving treatment, 90 percent will reduce their viral loads so that they are undetectable and D.C.’s rate of new infections will drop by 50 percent.

PrEP, short for pre-exposure prophylaxis, is a once-daily prescription anti-HIV pill that was approved by the Food and Drug Administration in 2012 for use by individuals who are HIV-negative but at risk for contracting HIV. When taken every day, it can reduce the chance of contracting HIV through intercourse by 90 percent and the chance of contraction by injection drug users by 70 percent.

But District residents do not have equal access to PrEP, to sexual health education or even to medical care for those who are HIV-positive. Recommendations for PrEP usage put forth by the Centers for Disease Control and Prevention in 2014 were largely targeted toward men who have sex with men, and public perception of the drug’s use largely mirrors that focus.

While Black men who have sex with men do make up D.C.’s most at-risk population for contracting HIV, Black women are the second-highest demographic at risk. Despite this high need among Black women, education outreach to them has been lacking, and they have little awareness of PrEP.

David Sternberg is the clinical services manager at HIPS, a nonprofit that provides services, advocacy, resources and support to people in D.C. engaged in sex work or drug use.  “I’ve done a lot of testing and advocacy and sexual education in the past amongst different populations,” Sternberg said. “White gay men in certain socio-economic positions know a lot about PrEP and with their insurance are able to access it. Of course, it’s not a blanket statement [about] all of that population, but more than not, in my experience.”

In his research surrounding women engaged in transactional sex work, the majority of whom were Black, Sternberg found that they have very little knowledge about PrEP. “It was kind of shocking,” he said.

A mural above a doorway alongside a flier that reads "Join the HIPS PrEP Program."

HIPS provides clients with a “respectful and judgement-free” space. | Photo by Jeanine Santucci

HIPS is one of the few organizations in D.C. that takes steps to connect clients to PrEP and it aims to do so in a judgment-free atmosphere. HIPS sends out teams to shelters and street corners where they conduct HIV tests. For those who test negative and are interested in PrEP, HIPS provides referrals to clinics that can prescribe it.

Low-income Black women or those who are homeless face systemic barriers to accessing PrEP when they are HIV-negative. If they are HIV-positive, they face significant stigma surrounding HIV in society and even within the medical community.

Since PrEP requires a prescription and follow-up appointments every three months, people with unstable housing face additional challenges in trying to obtain PrEP. Simply lacking a place to store the medication is a problem.

Dr. Monica Vohra, a primary care physician at Bread for the City, noted that transportation is a large problem for adherence to PrEP by patients experiencing homelessness. “How do you get to your provider to have these follow-up visits that are pretty much required for you to be able to take the medication?” Vohra asked. “PrEP is useful if it’s taken correctly. Its efficacy really reduces if it’s not taken on a consistent basis.”

Gerald Sabb, a community health nurse at Bread for the City, noted that not having a permanent phone number is another barrier for homeless people, because it is hard to locate patients for follow-up care.

PrEP is one tool for women to have sexual agency, according to Dr. Jennifer Huang Bouey,  an associate professor in the School of Nursing and Health Studies at Georgetown University.

“PrEP can be an option when other options are not available. And in this sense I think that women particularly can benefit from using PrEP because it’s more of an empowering practice that they can control,” she said.

Bouey and Sternberg are both part of a research team that conducted a study regarding PrEP and health care access for street-based sex workers in D.C. Among this population, which is at high risk for HIV infection, awareness of PrEP was low.

The researchers also found that health care providers are uncomfortable discussing sexual health with Black women and transgender women, sometimes fearing offending them by asking questions about HIV.

In addition, Sternberg noted that sometimes “providers have a hard time not putting their own moral beliefs in their care.” For example, health care professionals who have internalized stigma may ask the questions “How many sexual partners do you have?” or “Why do you think you need PrEP?” in condescending tones.

Insurance restrictions limiting the amount of time a doctor can spend with a patient compound the problem of not discussing sexual health during a doctor visit. Medicaid allows only seven to 15 minutes for some appointments, for example.

Such obstacles in health care make it important to provide access to judgment-free spaces where Black women who are HIV-negative can obtain PrEP and where those who are HIV-positive can obtain treatment.

Angela Hodges and Patricia Nalls pose in front of the Women's Collective sign, which reads "Sharing our stories, saving our lives."

Angela Hodges and Patricia Nalls at the Women’s Collective office. | Photo by Jeanine Santucci

Hodges has been going to Bread for the City not just for health care, but for the supportive staff, whom she credits for helping give her a voice and learning how to be an advocate for herself and others. Additionally, she learned about the work done at the Women’s Collective, an organization that provides HIV prevention, care and support for women in D.C.

The community aspect of the Women’s Collective and the education it offered about HIV helped Hodges the most. Through the Women’s Collective she was inspired to acknowledge and take control of her HIV status.

“Because of a stigma attached to it, I didn’t want anybody to know,” Hodges said. “At the very beginning I saw a news article that featured [Patricia Nalls]. She had founded the Women’s Collective, and it looked like something that maybe would help me. … It took a while. It didn’t start immediately from me going from denial to acceptance. But it was very helpful at the time.”

Hodges is now using her experience to help inspire others to live strong lives while HIV-positive.

“Being of color, we grow up with a lot of self-esteem problems within our culture,”  Hodges said. “I’m working on a nonprofit for young girls to be able to have high esteem and self-worth and self-love. To know that they never need to take the path that I took to get to where I am now.”

Hodges and Nalls believe that above all, people must understand that Black women who are HIV-positive are not guilty of anything. They can be mothers, productive workers and valuable members of society, just like anyone else. Hodges has come a long way since finding out her HIV status; she is thriving in her activism and has a vibrant personality.

“I’m always told that I don’t look like — you know, people have a false sense of what someone who is homeless looks like, a false sense of what someone who has been an addict looks like or what someone with HIV/AIDS looks like,” she said. “I had to take that leap of faith against my fear of revealing my status. … If I can help somebody else, I think that that will be very beneficial for myself as well as others. So I’m staying healthy.”