Thanking Goodness: Community care workers and HIV/AIDS patients help each other in South Africa

CAPE TOWN, South Africa –– Margaret Hans, 25, shuffles to the door of her simple but immaculate two-room township home. Thin with drawn facial features, she is still weak from tuberculosis — the all-too-familiar scourge that piggy-backs on the South African HIV epidemic.

It’s Tuesday, which means that community care worker Goodness Henama, 26, is making her weekly visit. Today, Hans has someone to talk to.

In any country, quality of life is all in the detail. But in South Africa, the bigger picture is dominant: As of 2009, 5.6 million people were living with HIV, and the country has been rushing to catch up on the roll out of anti-retroviral drugs and coping with the sheer social impact of 1.9 million orphans due to AIDS.

How, then, is there time to listen to Margaret?

Nearly a decade after it came into being, the President's Emergency Plan for Aids Relief (PEPFAR) –– which has spent $3.1 billion in South Africa since 2004 –– is moving increasingly to support local leadership and implementation capacity. And given the South African health system’s weaknesses in the face of the magnitude of AIDS and TB, that means an investment in people like Henama –– lay listeners with just a few weeks of training.

Hans is a former cleaner who lives with her 28-year-old builder boyfriend, Karel, and their five-year-old son, Carlos.

''Around here, in my street, I cannot talk to anyone. People try to avoid you, especially with TB. Karel won't get tested. He says he isn't ready,” said Hans.

Like many HIV-positive women in South Africa, Hans discovered her status while she was pregnant. During her pregnancy and while delivering, she received now-routine prevention of mother-to-child transmission (PMTCT) anti-retrovirals, and Carlos was born without the virus.

''Goodness comes and she checks that I am taking my pills. While I was sick with TB she came three times a week and at one stage she made sure I was admitted to hospital. I can her ask her things. She also speaks to Karel about testing — it is better when it comes from her. She knows our rights. Last month because of my TB we started getting a temporary disability grant of 1,200 rand a month ($150),'' said Hans.

A former supermarket cashier, Henama is one of 22 community care workers in Wallacedene township, in the Cape Town suburb of Kraainfontein. Serving a mostly unemployed population estimated at more than 60,000 people, Henama and her colleagues are paid 1,800 rand ($220) per month by the Western Cape health department. They are trained by Kheth'Impilo (''choose life'' in Xhosa), a nationwide non-government organization with 1,200 staff members, which received 100 miliion rand ($8.2 million) from PEPFAR last year.

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Eight months ago, Henama quit her job in an upscale food hall, taking a pay cut of more than 50 percent to become a community care worker.

''I love my community. We all, in our families, have been affected by AIDS. I wanted to do something meaningful, in which I could grow,'' said Henama, a high school graduate who could not afford to realize her dream of training to enter one of the caring professions.

''I have 200 clients like Margaret,'' she said. ''The best thing about the job is seeing people, week after week, gradually improving and getting stronger. When they say things like 'you gave me strength, Goodness, I feel better,' it is wonderful.''

The community care worker, who was strongly affected in her youth when her cousin died under a veil of family silence without ever disclosing his HIV status, said the stigma around AIDS and TB remains profound.

“In my work, I have to be careful to protect client confidentiality. I am known in the community and people gossip a lot. I tell my friends I am selling Avon products or collecting debts. I have nine clients living in the same street as Margaret but I take care to visit them on different days, even if it means a lot of extra walking.''

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Dr. Ashraf Grimwood, Kheth'Impilo CEO, said the charity's more than 600 community care workers (also known as patient advocates or PAs) around South Africa offer an example of ''one of the positives'' of the South African HIV epidemic.

''People too often criticize the Global Fund or PEPFAR, saying the focus on AIDS over the past decade has been to the detriment of the broader health service. This simply is not true, at least for us,” he said. The PAs are often high school graduates who use Kheth’Impilo as a chance to enter a career path, and subsequently, many become pharmacists, phlebotomists, or auxiliary social workers, he said. Grimwood added that thanks to the PAs work, mother-to-child transmission at six weeks is down from seven percent a few years ago to under one percent, and over a five-year period, 79.1 percent of Kheth’Impilo’s patients have stayed on their anti-retrovirals.

For Hans, who has just come off of an intensive six-month course of TB medication, the road remains long before she will feel strong enough again to hold down a regular cleaning job.

''I will be all right,'' she said. ''Goodness helps me not to worry.''

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