“I thought then that HIV was AIDS and that I was going to die. I walked around for 10 years wondering, ‘Is today the day that HIV will kill me?’ because I didn’t have the information,” says Moon, who is Black and lives outside Atlanta. She also lived in fear that she might infect her children. She threw out plates and forks after she used them because she worried (incorrectly) that sharing these items might spread HIV. She didn’t know what questions to ask her doctor, and he didn’t offer much information. As a result, she wasn’t getting the basic facts about her diagnosis that she needed. Then, when her physician left his practice, Moon switched doctors. At her new clinic, she met Freda Jones, a 52-year-old mother and professional peer counselor who works with patients who, like herself, are living with HIV. “Once they meet me and see someone who’s surviving HIV as well, it helps them know they can, too,” says Jones. She contracted the virus in 2002 from a long-term partner who knew he was HIV-positive but didn’t tell her, and is now one of three of her mother’s six daughters living with HIV. “I tell people that the one thing that you have that I didn’t have is a Kim Moon. I didn’t have anyone to talk to me. I was uneducated and I walked around for 10 years depressed, and I don’t want anyone else to do that,” says Moon.
The Rise of Peer-Centered HIV Counseling for Black Women
Moon and Jones are on the front lines of HIV patient-care reform. The resources they share with other HIV-positive people are available to everyone who needs them, but especially to Black women like themselves. Black women accounted for nearly 60 percent of new HIV diagnoses among women in the United States in 2018, according to the most recent data available from the CDC, despite representing only about 13 percent of all women nationwide. According to this data, Black Americans have an HIV infection rate of 45 per 100,000 people, more than double the infection rate of Latino Americans, which is the second most affected group, the CDC reports. Despite huge improvements in care, only around half of Black Americans living with HIV receive treatment that allows them to become virally suppressed, or effectively unable to pass the virus to someone else. Researchers and patient advocates attribute this to stigma and racial disparities that impact access to care. “A vital part of how to change these trends in HIV is the involvement of Black women,” says Mariam Davtyan, PhD, MPH, an assistant professor of research pediatrics and an HIV/AIDS researcher at the Keck School of Medicine at the University of Southern California in Los Angeles. “It can’t just be investigators and medical doctors concocting plans; you have to bring in the community members to discuss what their needs and barriers are,” Dr. Davtyan says. “We know the big trends in biomedical stuff, but in terms of other needs, the participation of the community is absolutely critical.” According to Davtyan, community involvement is crucial for getting to the root of why a person with HIV may not be seeking or sticking with treatment. It’s difficult for someone to focus on their health, Davtyan explains, if they are struggling to meet basic needs such as food, housing, transportation, or childcare — issues that a patient’s community can address and help solve. Medical experts may focus on viral suppression as the only measurement of how well a person living with HIV is managing their condition, but members of the community know this is just one piece of the puzzle.
Creating Change From the Inside
Mo Wahome, MPH, a principal investigator for the Pennsylvania-based nonprofit AIDS Care Group, has seen a recent shift in project funding in the HIV/AIDS space toward peer-centered initiatives. Wahome works at one of 12 clinics nationwide that received federal funding to launch pilot programs focused on helping Black women living with HIV get compassionate, competent care through peer-led groups. Wahome’s clinic is located in Delaware County, which has the third-highest cumulative number of HIV cases in the country. In its two and a half years of existence, the program has enrolled 80 people who identify as Black women living with HIV. “We found that when Black women who were living with HIV were the ones helping fellow women with HIV get access to care, it was more effective,” Wahome says. “They feel like they can talk to these people more than their medical providers and can share other needs that go beyond medical that we sometimes miss when it’s purely a medical visit. “Seeing women who are 20 years into their diagnosis and thriving helps break down the stigma and gives women hope that they can live long and healthy lives,” says Wahome. “Community health workers are women with lived experience. They understand more than anyone.” Moon understands how critical that connection can be for building trust. “People don’t care how much you know until they know how much you care, and then they will share things with you,” she says.
Dismantling Stigma
According to Davtyan, stigma is still one of the biggest obstacles related to HIV care, particularly for Black women. For instance, as with Freda Jones, women may become infected by an HIV-positive partner who hides their status because of shame or denial. Once infected, Black women may find themselves struggling with the emotional fallout. “Even when seen in an HIV-specific clinic, women of color are still stigmatizing themselves,” says Davtyan. “The stigma that occurs puts these women at a disadvantage, and a lot of mental health pathologies happen as a result. If you are stigmatized, you tend to internalize that stigma. It becomes part of your fabric, and that internalization creates anxiety and depression and stress, and when you are depressed and anxious you don’t want to see people, you don’t want to go to the doctor, you don’t want to care for yourself.” Retraining healthcare providers is step one to dismantling stigma, Davtyan says. When Moon works with medical students, she focuses on language. “I want to make them understand that language matters,” she says. “If doctors and nurses don’t know what to say and what not to say, it can make people feel like they are being stigmatized even if they aren’t.” Moon tells these medical students to remember that when working with patients, “Mental illness is real, shame is real, self-stigma is real, and it’s important to know how to manage these aspects of HIV as well, because you may be the only person someone has,” she says.
