Nkosi’s Haven is one of South Africa’s best-known centers for mothers living with HIV and for orphans. And even though fear of and discrimination against those with HIV/AIDS have decreased over the years, there is still a need for such a refuge.

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Editor’s note: This report follows our coverage last month on the quest for an HIV vaccine in South Africa. We traveled to the global epicenter of HIV/AIDS to report on the critical partnership between residents of the country’s poorest townships and a Seattle-led collaboration of scientists.

JOHANNESBURG, South Africa — Gail Johnson shudders when she thinks of all the tiny white coffins in South Africa 15 years ago.

The children now playing outside her office windows won’t face the same fate as that of her foster son Nkosi Johnson. He was HIV-positive, a diagnosis that no longer means widespread, hostile discrimination or a death sentence.

“The transformation is phenomenal from a life point-of-view,” she said. “People are living. … There are no traffic jams in cemeteries as there were.”

Nkosi’s Haven — one of South Africa’s best-known centers for mothers living with HIV and for orphans — marked the 15th anniversary of Nkosi Johnson’s death on June 1.

The organization, with an annual budget of under $300,000, was named for Nkosi, who spoke at the International AIDS Conference in Durban in 2000. He died the next year at age 12. Gail Johnson created the residential center at Nkosi’s request, she says, to allow mothers with HIV to live with their children without fear of separation.

On a recent day, the small, colorful set of cottages bustles with 25 HIV-positive moms and 96 children (of those, 71 are orphans and 35 are living with HIV).

The quest for a vaccine

From the series:

Teenage girls braid hair and listen to music after school, while older women knit in the winter sun. Middle-school-age boys work in the computer lab, while some young girls dash off to practice their dance moves. Inside the kitchen, Gail Johnson, the executive director, takes a break from her computer to taste tomorrow’s meal.

After dinner, mothers and children file into the nursing station to take antiretroviral drugs (ARVs) to control the virus. Today, South Africa has the largest ARV treatment program in the world, allowing individuals with HIV to lead rather normal, productive lives. Although South Africa continues to have one of the highest HIV-infection rates in the world, the treatment program has helped increase national life expectancy in the last decade from 53 to over 60.

“Now mums are living and lasting indefinitely, which is great,” said Johnson. “We now have to look at building the capacity of the mothers, so that they can be employable. … Our profile might have to change. But our women still need to be protected.”

Virginia, 52, left, and Helen, 64, talk and knit in the winter sun at Nkosi’s Haven. (Erika Schultz/The Seattle Times)
Virginia, 52, left, and Helen, 64, talk and knit in the winter sun at Nkosi’s Haven. (Erika Schultz/The Seattle Times)

In South Africa, young women engaging in heterosexual sex are most at risk for HIV. Women are more biologically predisposed to infection, and least empowered to negotiate condom use. The 2012 National Antenatal Survey reported that nearly 30 percent of pregnant girls and women were HIV positive; mother-to-child transmission has declined significantly.

Puleng, 31, discovered her HIV status in 2007 when she was pregnant with her second child. In 2009, her health deteriorated because she could not travel to and from Lesotho, her home country, to get her antiretrovirals each month.

As she grew sicker, Puleng, who had come to South Africa for a better life for her kids, said her husband forced her to move out. A friend helped her find Nkosi’s Haven, where women can stay indefinitely, with three meals a day, a bathroom with warm water and school for children.

Before school, Elizabeth, 8, and Bernard, 12, brush their teeth in the cottage where they live with their mother, Puleng.  (Erika Schultz/The Seattle Times)
Before school, Elizabeth, 8, and Bernard, 12, brush their teeth in the cottage where they live with their mother, Puleng. (Erika Schultz/The Seattle Times)

“I felt so welcome,” she said. “I can talk to anyone, hug anyone, do handshake with anyone and feeling warm and welcomed with my kids,” she said. “I was very happy and free.”

Puleng, who earns a stipend for working in the Nkosi’s Haven computer lab, said the stigma of living with HIV in South Africa has lessened. She said her boyfriend, who is HIV-negative, supports her and understands the condition. Puleng is open about having HIV and talks about it with people she meets, as well as about the importance of being tested.

Lindiwe, 23, believes she was infected with HIV when she was sexually assaulted as a child. After growing up with her grandmother and at an orphanage, she found stable housing and counseling at Nkosi’s Haven. She hopes to one day afford college to become a food and beverage manager. (Erika Schultz/The Seattle Times)
Lindiwe, 23, believes she was infected with HIV when she was sexually assaulted as a child. After growing up with her grandmother and at an orphanage, she found stable housing and counseling at Nkosi’s Haven. She hopes to one day afford college to become a food and beverage manager. (Erika Schultz/The Seattle Times)

Lindiwe, 23, believes she was infected with HIV when she was sexually assaulted as a child. After growing up with her grandmother and then in an orphanage, she found stable housing and counseling at Nkosi’s Haven more than a year ago.

“I’ve accepted that I am positive and there’s nothing I can do to change that,” she said. “The only way I can change it is by making people’s lives better, making them understand that you can actually live with this, as long as you accept it and drink your medication.”

Lindiwe helps take care of children at Nkosi’s Haven and also works in the kitchen several days a week. She hopes to one day afford college and become a food and beverage manager at a restaurant with an international clientele. “I love food and I love people,” she said.

Bernard, 12, prepares for school inside his cottage at Nkosi’s Haven. Puleng said the stigma around HIV was difficult years ago in South Africa, but acceptance is greater now. (Erika Schultz/The Seattle Times)
Bernard, 12, prepares for school inside his cottage at Nkosi’s Haven. Puleng said the stigma around HIV was difficult years ago in South Africa, but acceptance is greater now. (Erika Schultz/The Seattle Times)

She hopes to inspire others to be open about and accepting of their HIV status.

“Life doesn’t just end by you being positive and you being miserable about yourself,” said Lindiwe. “You can make a difference in the world. That is what I believe.”