For Nontando Kewana, watching a sister die of AIDS was enough. Living with a young daughter in the Nyanga township in Cape Town, South Africa, where nearly 30 percent of the population is HIV positive, Kewana wanted control of her own body, her future, her life.
In Nyanga it is generally the men who decide when to have sex and the men who control the use of condoms— the main source of protection against HIV. Kewana’s sister was infected after her husband slept with other women and did not use a condom.
So Kewana, 25, joined the vanguard of a new kind of feminism, one that is gaining a hold in the HIV community. She decided that to protect herself she would help find new technologies meant to give women control over their own bodies and protect themselves from contracting the deadly virus.
After Losing Sister to AIDS, Woman Empowered by StudyDec. 1, 201400:49
Kewana became a participant in an ongoing study testing whether a leave-in vaginal ring could be used as HIV prevention medication. It’s one of many technologies HIV scientists are developing with hopes of creating preventative medications controlled by and for women.
“In America, we think about HIV as we experience it, which was primarily in men who have sex with men,” said Dr. Sharon Hillier, a professor of Obstetrics, Gynecology and Reproductive Sciences at the University of Pittsburgh, whose work has focused on developing tools to help women reduce their risk of contracting HIV. “Globally, we’ve come to understand the face of the epidemic is young women 16-24.”
The female face of the epidemic has challenged HIV researchers and scientists to start thinking like feminists. “It’s a women-oriented approach,” Hillier said.
For Kewana, that means going to a Desmond Tutu HIV Foundation clinic once a month to be tested for HIV and to have her vaginal ring changed. Kewana found out about the clinic from a friend in 2012, around the same time her older sister died.
“A lot of people were dying outside because of HIV, but we aren’t taking it seriously,” she said. “People thought that if they got it [HIV] maybe they wouldn’t be healed, but they would still live long, but that is dangerous because I saw my sister say she’s fine but the following day she’s not because of AIDS. That is why I came to the clinic.”
Kewana remembers her sister calling her family together to tell them her status. “She had HIV a long time, but never told us,” Kewana said.
By the time her sister did, she had developed full-blown AIDS and was growing too weak to hide her illness. Watching her sister battle the deadly virus until her final days a year later sparked a light inside Kewana — she knew she wanted to make a difference for women like her sister who may not be able to control their status.
As a trial participant, Kewana receives regular check-ups and screenings, injectable birth control and condoms, along with her vaginal ring. However, Kewana does not know if the ring she has been given consists of antiretroviral medication or a placebo. She will not know until the study ends in 2015.
"I’m a mother, so I never want to leave my baby behind.”
“Even if I don’t have the medicine, I don’t care,” Kewana said. “Here’s something that maybe could help me. I have a baby to protect and to feed. I’m a mother, so I never want to leave my baby behind.”
Hillier said that innate drive makes women the perfect target for stopping the spread of HIV. “Women are much more accustomed to getting screenings and check-ups for family planning or cervical cancer, as opposed to men,” Hillier said.
The goal would be to develop long-lasting products containing antiretroviral medication that are not necessarily visible to or controlled by men. These products would not be limited to a vaginal ring, but may also include pills (pre-exposure prophylaxis, which has already been FDA approved in the United States) or vaginal gels.
“In the past decade, most advice for women to protect themselves has been to obtain from sex, use condoms, or be faithful,” Hillier said. “But what we know is that women can’t always negotiate condom use, so we have to provide them an opportunity to control prevention and put it in the hands of women early on, by providing them with a broad range of options that work in their lives.”
The ring study will end next year. Kewana said that when the next HIV prevention study starts, she would like to be the first to sign up, and maybe someday she will be running HIV trials herself.
“I want to work in a clinic,” she said. “Maybe there are some people who don’t take [HIV] seriously, but it’s something that kills.”