March 8, 2011
Roberta Willis (name changed), 26, has come a long way since first discovering she was HIV-positive, thanks to a little help from her friends: peers and mentors who are also living with HIV. Raped and impregnated by a neighbor when she was 15, Willis didn't tell anyone, including her ob-gyn. It wasn't until her daughter was born that she learned they were both infected. "A year later my mother put us out," Willis says. "I was overwhelmed and ashamed, with nowhere to turn."
Willis saw a newspaper article about a clinic that specialized in caring for women and families affected by HIV/AIDS. "We just showed up, not knowing what to expect," she says. A female volunteer who had been living with AIDS for a decade greeted them. "She told me her story, helped me fill out the paperwork, and introduced me to the case managers and told me about services," Willis says. "I trusted her because she wasn't afraid to say that she was living with AIDS, and she wanted to help me." Nine years later and doing well, Willis volunteered as a peer advocate at the same clinic, offering emotional support and helping to link other women to medical care; sharing information on treatment, resources and support services; accompanying women to the doctor to help them ask questions and take notes; and role-modeling how to live a productive HIV-positive life. A year later she was hired as a paid peer advocate-educator -- the first job she had ever had. "I never want another girl or woman to go through this alone," Willis says.
Most HIV programs and support services were designed to address the needs of gay men, the largest demographic group living with HIV/AIDS and, during the early years, the most visible. But having peer support can help keep women in care, says ob-gyn Jean R. Anderson, M.D., the founder and first director of the Johns Hopkins HIV Women's Health Program. Her program is one of the first to utilize HIV-positive women as peer advocates. Dr. Anderson says, "The social framework within which women live ... is perhaps the major determinant of their quality of life, and ultimately serves as either a facilitator or a barrier to good clinical care." Peer counseling is "an effective strategy for helping patients overcome some of those barriers," she adds.
Linda Scruggs of the Washington, D.C.-based AIDS Alliance for Children, Youth & Families (AACYF) was diagnosed with HIV 20 years ago. Instead of seeing her diagnosis as a death sentence, Scruggs saw her journey as an HIV-positive woman as an "opportunity to be a lifeline for other women." She now manages the AIDS Alliance's peer-training program for women. "We've trained 200 women from all over, and that work has touched 37,000 people around the country," Scruggs says. "I consider those 200 women my sisters."
Vanessa Johnson, executive vice president of the National Association of People With AIDS, was one of the first women to attend Scruggs' training. "I was already working in HIV/AIDS," Johnson says, "but this program gave me a different perspective on working with women. One of the big challenges is that women often struggle with disclosing their status."
Willis can relate. "It wasn't until I was 20 that I told anyone that I am HIV-positive," she says. "I got into a women's group that encouraged us to not just talk about the stuff around infection, but to talk about what it means to be an HIV/AIDS-infected woman." She adds: "How can you be a support to somebody if you won't talk about the thing that brings you together?"
"As difficult as an HIV/AIDS diagnosis can be, it can also be a turning point in a woman's life," says sociologist Celeste Watkins-Hayes, Ph.D., the lead researcher on "Health, Hardship, and Renewal," a study looking at the specific economic and emotional experiences of low-income Chicago women living with HIV/AIDS. Many HIV-infected women learn how to navigate services and systems in a way that they could never seem to do before their diagnosis, she says.
"Connecting with women who have walked in my shoes helped me, as a young mother, be determined not just to survive infection but to make a good life for me and my daughter," Willis says. "I am not an AIDS victim or a victim of my circumstances. That's what the ladies taught me." That is a lesson she will keep on teaching as she pays it forward.
Andrea King Collier is a freelance health and health-policy journalist. She is the lead author of The Black Woman's Guide to Black Men's Health.