When Joyce Nipher’s husband Moses was confronted with the possibility he might have AIDS, he threatened to poison his entire family if anyone tried to test him to confirm it. So, when he was admitted to the hospital with tuberculosis, and tests showed that he did have AIDS, he was never told of his diagnosis. Moses died without ever knowing his status.
Leaving his wife as a jobless AIDS widow in 2006, Moses marked the third AIDS death in Nipher’s family, after her uncle in 1995 and her sister in 1999. He also left Nipher with HIV-positive status. Whether she contracted the virus from Moses, an alcoholic with a propensity for extramarital affairs, or from a blood transfusion, she isn’t sure. But her own near-death experience led her to a life helping other Kenyans living with HIV, offering support and comfort to people whose communities are quick to judge – and shun.
Shortly after Moses died, Nipher’s three sons – then aged between 7 and 14 – discovered their mother lying on the floor of their one-room house in the small Nairobi slum of Kijiji. They ran and found Hanne Howard, a German who had just started a nongovernmental organization in their shantytown, and begged for help. Howard still remembers watching Nipher being carried out of her home and taken to hospital, a sack of bones. “She was really on her deathbed,” says Howard. “I never expected to see her again.”
But Nipher, now 48, recovered, and within a few months was volunteering with Howard’s organization. At first, the NGO gave her funding to hold AIDS awareness training sessions around the community. By 2008, she had formed her own organization Women Against Stigma (WAS), whose central tenet is that its members disclose their HIV statuses in a bid to combat the shame associated with the condition.
“People hide their status because there is fear. If you are a woman and you want a man, or you’re a man who needs a woman, people don’t want you,” says Nipher. “This is why they hide their status.”
More than 70 percent of the world’s 36.7 million HIV cases are in sub-Saharan Africa, the epicenter of the AIDS epidemic. Kenya ranks fourth globally in terms of HIV populations, with 1.5 million people living with the virus in a country of 44 million. And women account for a disproportionate 60 percent of Kenyan adults with HIV, with young women leading the rate of new infections.
This is one reason why WAS members are all women. Since its launch, the group has grown to include 26 women, almost all of whom have suffered the kind of ostracization that leads to financial hardship. In poor communities, an HIV-positive status often sees women either being disowned by their families or losing their jobs – or, in many cases, both will happen. Earlier this year, a woman from the community was beaten to death by her boyfriend when he discovered she had HIV, Nipher says.
According to Mariangela Simao, director of rights, gender, prevention and community mobilization for UNAIDS, discrimination and stigma present two separate but onerous challenges for women with HIV. “We always speak of the two of them together, but they mean different things,” she says. “Stigma is actually more difficult to address.”
Discrimination can be met with legal action, Simao says, but stigma is more about internal attitudes. She says that, while up to 70 percent of countries have some laws that would protect people living with HIV from discrimination, including employment discrimination, that doesn’t prevent the associated stigma.
“People have a high knowledge of HIV transmission in some countries … 96 percent know it’s sexually transmitted, but 25 percent would not buy food if they knew the person selling it was HIV positive,” says Simao. “This is not rational, because you know it’s not transmitted by contact.”
Nipher has firsthand experience of that stigma – she lost her house-cleaning job once her boss discovered she was taking antiretrovirals. While only about half of Women Against Stigma’s members are publicly open about their statuses, for most, the bigger incentive of joining is support – both moral and economic.
The WAS women have banded together to microfinance each other in a number of different income-generating activities, including beading necklaces, tie-dying clothes, making detergents and weaving baskets. The group initially loans each member 6,000 Kenyan shillings ($60) to invest in supplies they would otherwise never have the capital to buy. They must pay back the money over six months with 10 percent interest. All the interest accrued is held jointly in an account that in turn gains interest, creating a pool of money from which to channel back into the businesses, share profits or – when things are going well – launch new businesses.
“These women are very strong, hard-working people. It is important they can help themselves,” says Nipher.
The money she’s made with funding from WAS has enabled Nipher to move out of Kijiji, where houses are made from corrugated iron, to the neighboring, concrete community of Kibera.
Fellow WAS member Jones Ayuma, 47, has also been able to move out of the slum. She joined WAS after discovering her HIV status during door-to-door testing in 2010. Since then, she has become one of Nipher’s closest comrades and lives practically next door to the woman she describes as a sister.
“Those who fear stigma and don’t disclose their status, that works against them eventually,” says Ayuma. “They don’t get knowledge on how to take care of themselves, or any opportunity or economic activity. They lock themselves out of everything.”
Ayuma’s brother, sister and father all died of AIDS. “They died because of stigma. They didn’t want to even take pills,” she says.
Her mother and another sister are also HIV positive, and Ayuma has encouraged them to come into the open. Disclosing an HIV status can be like breaking out of prison, she says.
But UNAIDS director Simao cautions against pushing anyone to disclose their status who isn’t ready. She points to the “increasing trend” of criminalization of HIV transmission, citing a 2014 case where an HIV-positive Ugandan nurse was put on trial – and excoriated by the media – after accidentally exposing a newborn to her blood during an injection. Despite the baby not contracting the virus, the nurse was sentenced to three years’ imprisonment.
For Nipher, being open about her HIV status has brought more good than bad to her life. While she used to face prejudice as a result of her candor, she says people have come to see her value.
“They have changed their minds because they can see I’m the one who helps most of the people in the community,” she says.