Giving women reason to hope

NEW YORK —  Babalwa Mbono wined, dined and traipsed around Manhattan as if she were accustomed to the kinds of places she went: a party in a millionaire’s postmodern loft, the gleaming corporate headquarters of Johnson & Johnson, the well-appointed apartment she stayed in during her trip. In truth, she had never seen anything like them.

Her home in South Africa is a cardboard hut. She uses a communal outhouse, gets water from the streets or the town tap. Her village of Kyalitsha, just outside Cape Town, is ravaged by AIDS, as is most of her homeland. Her two young sons are among the 1 million babies born in South Africa each year to HIV-positive women, often contracting the virus at birth.

But Mbono is not the tragic figure one might expect from that thumbnail sketch. Articulate, intelligent, with a quick sense of humor, she recently traveled here on a fundraising mission led by the man she believes saved her life.

Mitch Besser, an obstetrician and gynecologist from San Diego, moved to Cape Town 4 1/2 years ago to try to help curb the raging AIDS epidemic that he says is “creating a nation of orphans” and eradicating a generation of mothers. He quickly found that medical expertise was useless unless women like Mbono were willing to take advantage of it. But they were terrified of even taking the HIV test, he says.

“The big issue is stigma,” Besser explains. “Just taking the HIV test is a sign to your partner, your family, the community, that you might be at risk. To be perceived that way means you will be ostracized and abandoned by family and friends.” Mbono amplifies: “If you have HIV,” she says, “no one wants to be with you, talk with you, let you into their house. Even the boyfriend or husband who gave you the illness may push you out, with no way to get food, no place to live.”

These psychological and social pressures are almost as daunting as the virus itself, both say. To help eliminate misinformation in a country with so little public health education, so few doctors and nurses, Besser’s idea was to train the women themselves -- as educators, motivators, informed supporters of one another.

In his Mothers’ Programmes, pregnant HIV-positive women are taught methods to prevent transmission of the virus from mother to child, before and after birth. They learn about medications, nutrition, formula feeding -- and how to combat societal pressures. Once their babies are born, they become mentors to the next group of newly diagnosed pregnant women.

The program started at one Cape Town maternity clinic three years ago and has since expanded to 64 sites across the country. Besser plans to extend it into Botswana, Ethiopia and Mozambique within the next three months, he says.

Most South African women are not even offered an HIV test until they become pregnant and go to a maternity clinic for an exam, Mbono says. By then the stakes are even higher: “If they test positive, they consider it a death sentence for them and their unborn child.” Most believe their only option would be to “have an abortion or kill themselves,” she says.

She has seen it all firsthand. Her sister committed suicide after being diagnosed positive at 18. “She just couldn’t take the stress, couldn’t take the virus within herself,” Mbono says. Although the HIV virus is an equal-opportunity attacker, to Mbono it seems it is women who suffer the most humiliation and indignity. Now 30, she became pregnant with her second child three years ago. She took the test, quite certain she was healthy. She remembers exactly what happened next.

“The counselor tell me, ‘Babalwa, you are positive.’ I was so shocked. I just closed my eyes. I said, ‘Tell me again.’ ” The counselor told her two more times, even showed her the form that read “positive” in heavy black ink. “I can’t explain how I was feeling, so angry at everything. I tell myself, ‘This is my husband that brought this to me. I am going to be sick and die. My baby is going to be infected and die. How am I going to leave my firstborn child, and he is still so young?’ ”

Mbono was more fortunate than her sister. The clinic where she tested had just started offering Besser’s program. The counselor took her to the mentoring group, just a few steps away. She refused to look in. “I didn’t want to see sick women and their dying babies,” she says. But when she opened her eyes, she remembers being “shocked and relieved. Because I see happy people. I see healthy moms and their healthy children playing on the floor.”

Mbono now believes that single act of joining the group has saved her life, certainly the life of the child she was carrying.

Exporting success

In California, Besser, 51, had a large private practice and headed the maternal HIV clinic at UC San Diego from 1990 to 1999, where, he says, there has not been a single case of mother-to-child transmission among clinic patients in the last 10 years. “If we could make it happen there, why not elsewhere?”

He looked to South Africa, where the AIDS epidemic is growing exponentially. But in such a struggling young democracy, with so many urgent priorities, elimination of HIV has not been at the top of the government’s list, Besser says. There has been little education, testing or available medication, especially in poverty-stricken areas.

As it stood, the overworked clinic counselors and nurses only had time to deliver the test result and quickly explain the proper medications and other precautions. “Imagine thinking you’re healthy, then being told you have HIV. Your mind is spinning,” says the lean, youthfully intense Besser. “You think you and your baby will die. You can’t tell anyone or ask for help. And while you are thinking all this, the counselor is telling you what medication to take, how to feed the baby, how to have safe sex. All in one session, while you are traumatized. Nothing sticks. And that is the last time anyone talks to you.”

Besser is an even-featured man who, even when standing still, tilts forward as if he’s about to break into a run. Like a race car idling fast, he exudes a certain kind of drama as he speed-talks in a soft, urgent purr, spewing out facts and figures to explain in a few minutes what it has taken him a lifetime to learn.

Drugs and treatment protocols recently made available in South Africa are not as sophisticated and effective as those in the United States, he says. But they work. And while his program does not test or deliver medications, it is a catalyst for women to utilize what is available.

In addition to allowing women to share knowledge about how to prolong their own lives and prevent passing the virus to their babies, the program has turned into a kind of group therapy project, he says. Sharing the stigma and pressures they face has led to new methods of confronting and dismantling those problems.

“Look at us,” the women tell the newly diagnosed, “we are happy and healthy, and so are our kids. You can be too.”

Though Besser is just one of dozens of individuals and groups striving to eradicate HIV and AIDS in underdeveloped countries, his work demonstrates how one man’s inspiration and drive can help change the health course of a country and the life course of those who learn about his work.

The turning point

Last February, Besser got a call that his sister Karen, 48, had gone in for minor surgery and hadn’t awakened from the anesthetic. She was in a coma. He flew to her bedside in Chicago, as did Karen’s best friend from college, Robin Smalley, a Los Angeles TV producer. While they were together in the hospital for two weeks, until his sister died, Besser so inspired Smalley with talk of his work that she later went to visit him in Cape Town.

“That week turned my life upside down,” she says. “I was blown away by the courage of the women, and the job they were doing to help each other, and the joy and gratitude they feel at just doing it.”

Smalley came home and asked her architect husband to move there with her for a year so she could volunteer administrative help, because “the program was exploding, and Mitch was basically running it alone.” Her husband surprised her by saying yes. “I could never even get him to move to Santa Monica,” Smalley says. They took their two children out of private school and have since lived in Cape Town, where she is an executive administrator for the project.

Smalley says she will continue her work with Besser even after the family returns to L.A. “I’ll just fly back and forth,” she says. “It’s the most gratifying work I’ve ever done. To see so many women empowered, so many babies born HIV negative that otherwise might not have been.”

Another disciple

Gene Falk, 51, who has known Besser since their days together at Williams College, has also fallen under his friend’s sway. Until last year, Falk was a vice president at Viacom in New York. “I was in Mitch’s wedding. I’m the godfather to his kids. So when I heard about Cape Town, I decided to visit.” That was in 2002. “Mitch was running the Mothers’ Programmes from the back of his truck. I fell in love with what he was doing.”

Falk visited a few more times and decided he, too, had organizational skills that could help Besser expand. He and his partner sold their New York condo in May and bought a house in Cape Town.

In fact, Besser’s work has inspired all sorts of support from American corporations and universities. In New York recently to solidify those kinds of connections and to raise funds for the expansion, Besser brought along Mbono and two other mentor mothers, Queen Mda and Minky Ntelwa, to speak on what the program has meant to them.

Mbono, serene and eloquent, explained to anyone who asked that the group had become her true family and her emotional sustenance. Her second son was born in 2003. He does not have the virus, and she has done everything necessary to keep him that way. Mda, too, gave birth to an HIV-negative son.

Ntelwa was not so fortunate. Although she took her medication as directed, she says, her son was born HIV positive. The group helped save her sanity, she says, and she is now proud to be a mentor.

The mentors, Besser says, are not just living with HIV, they are living beyond it. Because they are paid a small salary, they are becoming financially independent and entrepreneurial in other ways. Beading groups, blanket-making groups and other income-producing adjuncts are now part of the program, helping the women feed and clothe themselves and their babies. Some are even able to save small amounts, in hopes of someday buying a better house.

With emotional support from the group, they have become less afraid to risk disclosing their illness. (Women in South Africa have been beaten to death after admitting their HIV-positive status, Besser says.) To stay healthy, the women must take medication and formula-feed their babies, both of which are dead giveaways that they have the virus, Besser says, so the women don’t do either if they’re afraid of being found out.

Some have even gone so far as to occasionally wear T-shirts that say “HIV positive and proud.” They have become activists and educators, professors of a sort. Women who would once have felt like outcasts now have a special, enlightened community of their own, one that bestows dignity and professional purpose.

Besser says even he couldn’t have imagined how far-reaching the program would become. He is careful, though, to point out that he is just one of many who are working to eliminate HIV in South Africa, and nowhere near the most important, citing Fareed Abdullah, a local health official who set up the first HIV treatment program there.

Besser is affiliated with three Cape Town hospitals and the university in addition to working on his Mothers’ Programmes, and he also spends a portion of his time in medical research. Until he began receiving a salary very recently, he had helped support his wife, an epidemiologist, and two young sons by flying back and forth to the United States to fill in for doctors who were taking short leaves.

He was drawn to South Africa, he says, for the opportunity to make a direct difference. “You get a sense here that you can change things -- that with energy and commitment you really can help make things better. Just look at the orphan issue, for example. If we can flatten the curve of orphans created by parents dying of AIDS, just think what that means to the country and the culture.... “ And he’s off and running again.

His impact is borne out by the mentors. “If I didn’t join this group, I would already be dead,” says Ntelwa. “I saw no future for me and my child with HIV. I was just facing a grave. When I started the program, I started a whole new life.”