Divided we fall: how community organisation is key to beating HIV/AIDS

By Solenn Honorine, Médecins Sans Frontières

HIV still kills 1.6 million people every year, most of them in the poor countries of sub-Saharan Africa. In order to bring life-saving antiretroviral therapy (ART) to the 16 million who still need it worldwide, it is crucial to alleviate one of the main barriers preventing access to care: the distance to health centers where they can get these drugs. Community models of care  simplify ways to access treatment. In the Gutu district of rural Zimbabwe, the introduction of the Community ART Group by Médecins Sans Frontières (MSF) has transformed the lives of people living with HIV.

When 68-year-old Arnon Chipondoro learned that his daughter Elizabeth was HIV-positive, a wave of relief washed over him. “Me too!”, he said, embracing her. He had been living with his secret for three years – a secret he suspected was shared by many others in his village. In Zimbabwe, one in seven adults live with the virus and it strikes indiscriminately, as far out as his remote village of Lowlands, a scattering of thatched huts dispersed through the savannah.
For the past three years, Arnon had been sneaking out of his house at 4am to trek through the bush under the star-lit sky with utmost discretion. If the neighbors saw that he was going there too often, they would start gossiping about him having HIV. Arnon would only turn on his cell phone flashlight when he was crossing the river separating his village from Gutu town, pants hiked up to mid-thighs, careful not to slip on the wobbling rocks. “It’s the best shortcut”, he says. “During the rainy season I’d have to walk along the road and it would take five to six hours to make the trip”. On good days, he would make it to the clinic by 7am – early enough so that only the people who had slept on the clinic’s porch were ahead of him on the line of patients waiting to see their nurse or doctor. He’d be out of there by mid-day, rushing back home to make it by nightfall. “And that was just to pick up the drugs, nothing more. We wouldn’t even see a doctor because people like us, who are doing well on treatment, don’t need a check up every visit”, his friend Varaidzo Chipunza chimes in. “But now it’s different. Now we’re fast tracked: when we go to the clinic our tablets have already been prepared and we don’t have to queue”.

A new model of community care

Varaidzo belongs to Arnon’s Community ART Group (or CAG), a model invented by MSF that was introduced in the Gutu district of Zimbabwe a year ago. In a CAG, only one group member travels to the clinic each time to pick up the drug refill for all members of the group. It means that Arnon now only has to make the trip to the clinic once a year, when all the CAG members go there together for their annual medical consultation and check that their medications are working properly. The other times, instead of him making the journey, his life-saving drugs are delivered in his village, almost to his doorstep, by another CAG group member. It means that he doesn’t waste a full day of tilling his field, that he doesn’t waste a day of an already low income – that he doesn’t have to choose between his long-term health and his short term economic survival. And it also means that now he’s part of a group who will be supporting him if he has trouble with the pills’ side effects, to whom he can talk about the life-long burden that comes with living with HIV. His CAG group has taken the burden of his secret off his shoulders.
In Lowlands village, Arnon, his daughter Elizabeth, and three others, have decided that their disease should not be lived in isolation. In a move of defiance against the virus they’ve named their group “Tashinga” – which (in Shona) means “We’ve suffered, but fought on”.

Solidarity

Elizabeth opens a school notebook full of neat handwritten notes. “That’s our Constitution”, she explains.

Rule number one: if a group member has a problem, the others have to help him.

Rule number two: attendance to group meetings is compulsory.

Rule number three: group discussions are confidential.

And then the list goes on, detailing the laws that the five have imposed to themselves.

Money is a concern of course: when one of them goes to the clinic, he or she will receive one dollar from each member to compensate for the work day wasted plowing one’s field, and allow him to afford a snack in town. The solidarity created by a shared secret is put to productive use: as there’s always a bit unspent, the group capitalises every month and plans to invest the capital created to create a communal chicken farm.
Except that it’s not a secret anymore, not really. The Tashinga group has already started coming out, speaking to others in the village of the need to get tested and started on treatment so that not only they will not be sick, or die, because of HIV, but research has proven that when ARV treatment works well, the risk of transmission of the virus to others is reduced by up to 96%. Adherence to treatment is key to curb the HIV pandemic, but it can only happen if people are able to access treatment despite the obstacles. “Since the CAG was implemented, my life has changed. Meeting other people who are HIV positive made me accept my status, and now I can talk loudly about it”, asserts Varaidzo. Of course all members knew each other before the creation of their CAG; there is no anonymity in a rural Zimbabwean village. But it was only by accident that they’d learn of other people’s status, by bumping into each other at the Gutu clinic. In fact, they say, there are at least five other people in the village who are also HIV-positive. “They don’t want to disclose their status, so they hide by going to another clinic that is even further away”, says Antony Chivanga, Varaidzo’s husband. He giggles. “But we know! They’ll come around and join our CAG”.

Rolling out community models

MSF pioneered the Community ART Groups (CAGs) in the Tete province of Mozambique in 2008. It is part of a continuum of community models of care aimed at alleviating two major barriers to accessing and keeping on ARV treatment, distance to health facilities and costs associated to the travel, from giving a six-month drugs supply to each patients instead of 30 day refill, to gathering larger groups in urban adherence clubs or organising rural communities into CAGs. The models have progressively been adopted by countries throughout Southern Africa and have proven to be successful in helping people remain in care for the rest of their lives, which is key to lower risk of transmission and of built-up resistance to the first line of antiretroviral treatments. In Tete, over 90% of the 8.100 people belonging to the groups were still in ARV care after four years, when nationwide retention in care was at only 64% of people with the same profile. In 2012, the CAG model was endorsed by the Mozambican government as a model for people living with HIV. Last July, the Gutu provincial authorities of Zimbabwe gave permission for its district-wide roll out.

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