When the HIV/AIDS test the Rev. Joyce Turner Keller administers to a young woman in Baton Rouge, Louisiana comes back negative, one breathes a huge sigh of relief and she does too.
Thousands of miles away in Lagos, Nigeria, Daisy Uwakwe, an adolescent who has been infected with HIV since birth, is becoming active in the fight against the spread of HIV/AIDS among her peers. Daisy attends an HIV youth camp run by Positive Action for Treatment Access (PATA), an NGO founded by Morolake Odetoyinbo.
As people unite to raise awareness of HIV on World AIDS Day, annually observed on Dec. 1, Keller and Odetoyinbo, are on a mission. They are among several women living with HIV/AIDS featured in a new documentary "Nothing Without Us: The Women Who Will End AIDS." The 68-minute documentary, directed and co-produced by Harriet Hirshorn, made its North American premiere at "DOC NYC” in November.
Shedding light on the activism of women living with the viruses, the film began to take shape in the early 2000s while Hirshorn was living in France. She worked with a researcher doing a feasibility study on the economic impact of making HIV/AIDS treatment available in Africa. During her travels, she observed a trend: The individuals who were the most active around access to treatment, legal aid, support groups, finding services, and care were women.
"Many were young mothers; widows. They were living in HIV; involved in mother-to-child transmission studies,” Hirshorn said to NBC News during an interview in a coffee shop on New York City's Lower East Side. "I realized that this was something that was not visible at all. People weren't talking about it in the media."
Hirshorn, who has done work around social justice issues for years, interviewed 30 women "with very disparate stories" for the film before narrowing that number down to five.
The five women are African and Black American. Hirshorn said the selection was not intentional but occurred through a combination of factors. One is the high prevalence of HIV/AIDS in certain populations such as in Nigeria and black women in southern United States. These are two regions where the viruses are on the rise for various reasons including stigmatization, ineffective abstinence education, and conspiracies of silence. Another factor, Hirshorn said, was her desire to "focus on people who struck me as amazing in some way."
She wants people to walk away from the film knowing there is hope.
"I want people to fill stimulated and awake that something can be done and that it is worth getting into the fight,” she said. ”I also think that like Joyce [Keller] says, 'What do we need to end this? We need everybody in this room to talk about it — young and old'."
In an October issue of the New England Journal of Medicine, experts said in a report that HIV infection may spread globally because of an 18 percent increase in resistance to some antiretroviral (ART) drugs since 2001. Asked about these findings, Hirshorn recounted the story of a Nigerian man who died after his ART no longer worked. He was the victim of a "stock-out," which occurs when one's ART is no longer in stock and one is given another ART that is ineffective. This disrupts the immune system, so when the initial ART is once again available it is no longer effective, creating a resistance. ART treatments must be adhered to with ruthless efficiency without fail, if they are to work.
"I feel the goal is always the same: Get the medicine to the people and this will all be fine. Or if it is not fine it's not going to be as bad as irresponsibly shifting treatments on people,” she said. “That's what creates drug-resistant strains, basically. You're not getting the thing that your body needs."
Getting the particular drug that their bodies needed is a major reason that the women featured in "Nothing Without Us" are still with us today. The film is an inspirational “sisters doin' it for themselves” story. These are average women who proved what can be done with the power of one. Determined to live, they declared, “I will not allow this disease to beat me. I will beat it." In becoming an activist for themselves, they would become an activist for many.
The documentary chronicles success stories of black and African women living with HIV/AIDS in real time. Gina Brown of New Orleans, for instance, was diagnosed with AIDS in the 1990s. She is an impassioned, dedicated HIV/AIDS counselor, tester, and advocate. Brown also gave birth to a daughter who was treated with the antiretroviral medication AZT at birth and tested negative for AIDS after a series of the treatments.
Treatment for HIV/AIDS has come a long way since AZT, and these viruses need not be a public health concern if government and the marketplace would simply do the right thing, Hirshorn believes.
"I think the cure is everybody takes antiretrovirals who's HIV-positive. If everybody who has HIV is treated, there will be no more HIV. It will all be gone," she asserted. "As Morolake [Odetoyinbo] says in the film, it's the closest thing we have to a vaccine right now. Because it won't be contagious anymore.”
"Nothing Without Us" is available online through Women Make Movies.