A little before 10 a.m., Carol Nyirenda is standing in the shade, eyeing the nearly empty courtyard of Hope House. Here, a week earlier, in the Lusaka birthplace of the HIV advocacy movement, she had called on attendees at a rally protesting cuts in treatment and services to come back—today—to join her in reinvigorating a coalition of women living with HIV.
Dusting crumbs from a muffin from her T-shirt, she holds her cell phone against her ear, her eyes peering into the shadows of the overhang where mostly empty rows of seats are lined, as if searching for reinforcements.
“I had to eat, to take my medicine,” she says. “I actually forgot yesterday.”
She says this with an abashed smile—pleased, perhaps, that she is that busy, embarrassed that she took even a small risk of squandering her health now, of all times.
Six years ago, hospitalized, lying on what she hoped was her deathbed, she begged her mother to stop praying for her. She was exhausted from the two-year search for answers before the tuberculosis that was stealing her life was linked to an HIV diagnosis. Pain from the Kaposi’s sarcoma that covered her feet and legs wracked her body; watching her husband and friends die had numbed her mind; being sick with an illness she had done nothing to expose herself to, aside from having sex with her own husband, had sent her into stark denial. It was a visit from her 12-year-old daughter, who didn’t notice how gaunt and wasted her mother had become, and only asked when she would come home that reversed her determination to die, she says now.
She joined a support group for people on treatment for HIV. She chipped in, as a volunteer, to help the group to function, but wasn’t interested in sharing stories or pain. Strong volunteers, which she was, get training opportunities, though, and with what she learned she directed her efforts at the then ignored link between HIV and TB. She told members of her support group she wanted to run her own organization, and travel the world.
Now she is executive director of CITAM+ (Community Initiative for TB, HIV/AIDS and Malaria plus related diseases), and has served on the board of the Global Fund to Fight AIDS, Tuberculosis and Malaria, as well as UNITAID and the International Union Against Lung Disease and Tuberculosis.
Nyirenda had been home just a few days from a three-continent, four-country, five-week trip of global health speaking stops and conferences when she seized the moment at the rally here to organize the women in the crowd to return today. In the week in between, she invited a representative of a nonprofit microfinancing organization to talk to the women. Now, about five minutes to starting time, about 30 women, all of whom arrived on foot, have gathered.
“I was hoping for about a hundred,” she says. “I think I’ll get about 50. I think a lot will arrive late.”
A friend of Nyirenda’s started COZWHA (Coalition of Zambian Women Living With HIV/AIDS) a few years ago but died shortly after—Nyirenda says from a bad reaction to starting antiretroviral treatment to control her AIDS too late. This is one of the problems in the fight against HIV: for well into the first two decades of the epidemic here, people who knew the most about it died before they had the time and resources to share what they knew.
The extreme poverty of the people who have the most at stake in fighting the epidemic is another problem.
Nyirenda waits, about 15 minutes, restlessly.
This is life here where those most in need of services travel far from shanty compounds off the edges of town, hitching rides or jamming into overloaded minibuses that might or might not break down in the course of their lurching journey through the inching traffic of this overcrowded capital.
As she is waiting about 10 more women walk through the gates of the compound. They continue to come as she takes her place in the front of the platform under the roof.
She tells her story—how she had nothing but the illness that nearly killed her when her husband died, and how one of her kids is in college now, the other out and working—while about 20 more women arrive.
“Most of us are widows,” Nyirenda says. “Whatever you have been through, I have been through, ten times over.”
She shows them what she does when she has to take her medicine during a meeting of Global Fund officials—whipping out the box of pills, and waving it. She tells the people at the board meetings that if she doesn’t take her medicine, she will die.
“I tell them, if I don’t take it, you are killing me.”
Some of the women—about 70 have arrived by now—gasp. More cheer. One takes out her pill bottle and starts rattling it. The women burst into song. It is a cheerful sounding song, in local vernacular. In translation the lyrics say:
“You hide your drugs, and stigma kills you, you hide your clinic card and stigma kills you.”
They smile as they sing.
More women arrive.
“I am busy,” Nyirenda tells them. “I can’t do it without you.”
By the end, more than two hours later, 112 women have come. They plan to meet weekly, to build a plan to carry on.