Clarisse Mawaki (56) was close to death when she couldn’t afford aids medication any longer, back in 1999. Today she and her team of volunteers – all of them HIV positive – provide free ARVs to hundreds of patients in Kinshasa’s poorest quarters, with support from Cordaid and the Global Fund. Together they fight stigma and ignorance and unclog overstretched health structures in the process. “This is not work, this is about our life.”
‘A living tomb’. It’s not uncommon this is what bystanders call Clarisse, warning others not to shake her hand. It’s something so many of her seropositive ‘sisters and brothers’ experience. Especially the sisters. Because women in Kinshasa, like elsewhere in the world, are disproportionally infected and affected by the epidemic.
Clarisse helps them to fight back. “We support people who are infected to be open, to stop hiding. We help them to take health into their own hands and to live positively”, she explains.
Turning patients into caregivers
10 years ago Clarisse pioneered the idea of ‘demedicalizing’ part of the HIV/AIDS response by putting it right in the heart of the poorest and most affected communities in Kinshasa. “At the time hospitals couldn’t handle the number of patients any longer. So we had to find solutions ourselves. We, the patients.”
“We call them, go to their house, try to find out. We know our patients, live in the same streets, fight the same fight against HIV.”
What Clarisse did, with support of MSF and RNOAC (the Congolese network of self-help groups of people living with HIV) was as simple as it was brilliant: turning patients into caregivers and bringing key elements of the response – like testing and drug distribution – as close to the homes of the affected persons as possible. Kinshasa now counts 8 community centers where this is being done. Cordaid, through the Global Fund, supports 3 of them. Clarisse is the supervisor of one of these so-called postes de distribution.
One of them lies near the Congo river, in a muddy – and often flooded – narrow street of Barumbu, on the city’s northern outskirts. This is where we meet Clarisse and her team of volunteers. The center’s name, on the façade of a somewhat rickety two-floor house, barely survived 7 years of DRC weather.
Keeping track of patients
“Part of what we do here”, Clarisse explains as she guides us through the first 2 of 3 main rooms, “is following up patients’ ARV therapy adherence. Patients who are stable are referred to us by the health centers. We do the intake and provide the drugs prescribed by their doctors and we follow up on them.” If someone doesn’t show up Clarisse’s team goes a long way to prevent losing patients out of sight. “We call them, we go to their house, we try to find out”, she says. “We need to know, because failing to take your pills every day, can turn out to be very dangerous. We know our patients, we live in the same streets, fight the same fight against HIV.”
There’s a scale in every room. Patients’ weight is important. “Once their weight drops, we know something is wrong. We refer people back to their health center if they have lost more than 30% of their weight. After all, we are not doctors. Luckily, most of our patients keep well on track.”
ARV drugs is what keep Clarisse, her staff and the people they receive alive. These days, with the Global Fund support and the thorough, nationwide HIV and TB program Cordaid implements – supplying over 3500 health centers with ARVs, the risk of running out of drugs is minimal. It used to be different.
“I was tested positive in 1999”, Clarisse says. “My husband had infected me, yet people accused me of being a prostitute. After he died I ended up taking care of the children by myself. A little later I got AIDS.”
At the time ARVs were very expensive. “The first months family members emptied their wallets for me and paid thousands of dollars to keep me alive”, she continues. “Until they had nothing left. I stopped taking pills for 3 months. I looked into the eyes of death. I feared for my children. Who was going to take care of them? Things got worse. Even in my own family people accused me of being a witch.”
When a pharmacist – who had run out of ARVs himself – tells Clarisse that MSF distributes free drugs at one of their centers, somehow hope returns. “This was in 2000. I went there. They helped me, put me on drugs. These women took care of me, told me not to lose faith, and to stand up for myself. It was then that I decided to become like them. I was going to help others. And I was not going to be silenced, like so many HIV+ women.”
Challenges of ARV therapy adherence in Kinshasa
Whenever there is a risk of drug shortages, like a few years back, Clarisse moves heaven and earth to find the boxes of pills to keep her patients alive. “Some time back this health facility – our supplies come from the zones de santé – bluntly told me they had run out of ARVs and asked me to leave. I told them they were playing with our lives. I didn’t move until they had finally found a dozen of boxes by calling around endlessly.”
In the harsh conditions of poverty-stricken Barumbu, ARV therapy is a matter of almost Olympian discipline. “First, you have to take your pills every day. That in itself is not easy”, Clarisse explains. “Some take two or three, some take more. After almost 20 years of ARV therapy, I still take nine a day. They have side-effects, cause kidney problems, mess with your hormones. Secondly, here in Kinshasa people live from day to day. To survive, they move around constantly, trying to find work, food, money. It’s easy to forget taking your pills or simply impossible to go to the center for new pills.”
“We pay for meals so that brothers and sisters in hospitals have something to eat in their last months. We cannot let them starve to death.”
The intense moments of voluntary testing
The next room Clarisse takes us to is the place where any community member – meaning the thousands of people living near the center – can come to get tested voluntarily. “It’s different”, Clarisse explains, “in that no reference is needed from a medical center.”
Staff who do the screening – two young women – know exactly what it takes to get tested, having been there themselves. “These are intense and extremely confidential moments”, one of them says. “Every person is screened and tested in a strictly 1 to 1 setting. No mothers or husbands or wives are allowed to be present.”
Confidentiality is one of 2 pillars of Clarisse’s centers. The other one being a strict no-charge arrangement. No one pays for anything. It’s written in capitals on almost every wall. La confidentialité + la gratuité. “This is incomparable to some of the health centers. Apart from having to pay for medical care – up to 10 dollars to get tested – seropositive patients meet with a lot of stigmas over there. Going from making you wait longer than others to threats of disclosing your status to everyone in the waiting room.”
Last month some 40 people asked to be tested by Clarisse’s team. 7 were positive. On average 19% of the people test in the ‘poste de distribution’ turn out to be HIV+. Which is a lot more than the average of 2 to 5% in the medical health centers. “This is because we operate nearer to the most vulnerable groups and because in our communities people are less afraid of being tested”, Clarisse explains.
Safe haven, self-help group and savings bank
The small poste de distribution in one of Barumbu’s mud streets is more than a center. It’s literally a safe haven. “We sometimes offer a place to sleep to women who have been chased out of their homes because of the disease. They sleep here, in one of these rooms, until they find a more permanent solution”, Clarisse says.
Then there’s the center’s self-help group, gathering once a month. Staff put a few dollars of their volunteer’s premium into a savings fund, patients pay smaller amounts. “Up to 50 people gather here”, says Clarisse. “We chat, we laugh, we cry and we collect money. We talk about who needs what. We pay for meals so that brothers and sisters in hospitals have something to eat in their last months. Many are abandoned by their families and the hospitals do not provide food. We cannot let them starve to death. We hand out money to patients allowing them to do some business or to buy food, pay for their children’s education.”
Clarisse and her team are no doctors and no nurses. They are patients and trained paramedics. They distribute drugs. They screen and test. But most of all they are survivors who infuse other patients with the will and the power to live. They serve as an example. They are HIV-positive. They were chased away by their husbands, families or friends, accused as witches, robbed of their income, their health and nearly their lives. Yet they fought back and now help hundreds of others to rise, to take responsibility for their own health and to be stronger than stigma.
All costs of the ‘postes de distribution’ of Barumbu and 2 others in Kinshasa – rent, drugs, tests, staff premiums – are covered by the Global Fund program in DRC, implemented by Cordaid and partners. This program provides drugs and other forms of support to 3540 health facilities in DR Congo.
Read more about Cordaid’s Health Care program.