By Annie De Groot, M.D.
I am sitting in my office in Providence thinking about Mali – sitting not just miles but centuries and distances more ethereal from Bamako. There are no donkeys waiting patiently for their burdens in the streets nor are the same streets full of impromptu lagoons or cars that are stripped to their bare bones having been marooned there for decades. There are no children playing with wire facsimiles of toys, wearing shreds of clothing. There are no dogs skulking at the fringes of the road, watching for flying stones, no beggars with twisted limbs creeping along the sidewalk on low carts with wheels nor are there whole families bedding down in front of shuttered stores for the night, with stones for pillows.
There are no sudden rushes of rain, nor the verdant splendor that comes afterwards nor red earth to contrast with the green nor the joy of being that is everywhere. That beauty is Mali. That joy of being that is everywhere in Bamako is uniquely Malian. That joy of being is abundant despite the lack of food, and clothing, education and certitude of health. Despite those deficits, in Mali, there is abundant joy to share.
But joy does not feed a child, nor is it enough to save a life. Perhaps that joy is one way of making it possible for people to accept the great disparities that are so obvious to those of us who come from outside. We can see but do not accept the great distance between health care systems and human welfare that we so easily transcend with planes and trains and bushels of dollar bills. We cannot accept this.
This is distance that dislocates the mind. This is distance that is built not out of asphalt but of disdain. And neglect. And willingness to forget. How can we accept the choices that are made every day in Mali- the choice of water that comes from polluted streams or clean water that is sold for prices that are beyond the reach of those that live at the fringe? Or, even worse, when resources are available in Mali (like bednets and antiretroviral medications and clean water) why are they not made available to those in need?
And so what is the problem have we come to address? We are in Bamako to stop AIDS. Eventually, we believe, we will have a vaccine that will stop this. Even though the vaccine is in development and making good progress, it is years away. What can we do in the meantime? Stop mother to child transmission. Teach about HIV prevention. Make treatment accessible. Bring Hope.
AIDS affects one in every 30 Malian women who are giving birth – and who can pass the virus along to their babies if their infection is not detected. Prevention is simple and almost 100% effective. So – while waiting for our vaccine to be developed – a long slow process that may take many more years, we wondered why not stop AIDS right now, if we can?
And so, in fact, last year we said why not stop AIDS in a tiny clinic in the village of Sikoroni, outside of Bamako, even though it had never been done before. There were no mother –to child-transmission programs in any of the villages in Mali. But we knew that there were women who had HIV in that village who would never get tested and would, if tested, never travel to the “center of reference” several miles away to deliver. We asked to help, our help was accepted, and so we set up a mother – to – child HIV transmission prevention program (Chez Rosalie).
Here are the results of our work – over the past 6 years, Hope Center Clinic midwives counseled 8,202 women about HIV infection (115 per month on average). All were offered a free HIV test, following pre-test counseling, and 84% agreed. During this period, 168 women tested HIV sero-positive and most accepted MTCTP treatment at the Chez Rosalie. Of those that delivered at the Hope Center Clinic, most of the new HIV-seropositive mothers were given nutrition and HIV treatment during the post-partum period to further reduce the risk of HIV infection. A total of 30 children have been tested for HIV. 100% of babies born to mothers who adhered to recommended treatment during pregnancy and post-partum were free of HIV.
I don’t know if it’s possible to describe how difficult it is to do this work in these most basic of circumstances. There are cell phones, yes, but often there is no running water. There are computers in the clinic (we brought them) but no patient records to speak of (until we came). There is a basic understanding of AIDS but no understanding of viruses and immune systems and how HIV is transmitted. The doctors and nurses are well meaning but overwhelmed with work – more than 100 births per in the clinic, day in, day out, without stop.
GAIA volunteer Victoria is catching babies at Chez Rosalie, our mother-to-child HIV transmission prevention program. She is catching babies in a room that is as old as the gesture itself. That room is dark, and hot, and smells like blood -there is nothing that remotely resembles the bright sterile field that she worked in before coming here. Victoria is catching babies and celebrating new lives – six bright new beings in just one day last Friday before I left to come home. Those babies were born while we were meeting just outside in the courtyard. I asked how this could be? We did not hear anything! Victoria told me that the women were bearing children without a even a cry – their only expression of pain was a single tear that rolled slowly down sweating faces in labor.
GAIA volunteer Maddie is teaming with a young woman living with AIDS called Ramatoullaye to track down and destroy ignorance about HIV. Armed with T shirts and a simple message, they started their work on Monday. Five fingers, five essential ideas: Treatment is Hope, Knowing is Power, Transmission can be Stopped, Families (ring finger) and Communities (hand) can fight AIDS together. This message will go to the elders, the women’s groups, the men’s groups, and to youth. Only 12 % of girls in Mali know how HIV is transmitted. Maddie’s program (Hêré Bolo, hand of hope) will change that.
Given these basic circumstances and the most basic of health care, we were amazed that the level of acceptance of HIV testing among the mothers at the clinic was so high – higher than reports from most front line clinics. We believe this is because they were given a clear choice – between health for their children or ill health. Given the choice, who would do differently?
But there is one problem that we discovered – even though we may have saved as many as 18 babies from HIV; none of their mothers were yet on treatment when we returned this summer, for their own HIV infection. And one of the mothers died -at least one from AIDS. We do not accept this.
When we asked why, the doctors said that treatment was not available in the clinic, even though it is free in Mali. The only place to get treated is in one of the “centers of excellence” where there are many patients, and too few doctors, and where our patients are afraid to
go. And so we said, again, why not start an HIV clinic to take care of the women and their partners? GAIA donor Deb Norman made it possible to begin to think it possible, with her gift of $10,000 to start Hope Center clinic in Sikoroni, this Spring. While I was in Mali just now, we talked to the Chief of the village of Sikoroni, a gnarled man who welcomed us to his home high on the hill above Sikoroni, and his counselors about Hope Center Clinic. We talked to the Mayor of Commune 1 and to Dr. Youssouf Sow, the local “director” of the many neighborhood clinics – while surprised by our request, they were pleased to give us their help. So we have their permission to build as soon as they confirm the site – the spot behind the clinic is still the best option, although we’re going to have the city planners come take a look and see what they think.
And so, in answer to that question – what can we do, faced with the great disparities in care that exist between our own experience and Africa? We must do what we can, This is what we can do – shine a light, show the way, set up a pilot program, show that it can be better, raise expectations, ask not why, but why not. Indeed. We can get the women in the village that need to be treated on treatment. We can test their partners. We can set up the electronic medical records that are needed to track them. We will work on getting HIV medication delivered to the clinic for them to take. We can put internet in the clinic. We can get solar power batteries to run the clinic’s electricity from a local company that makes the batteries – AfriPower. We can get lab results wired to us from the clinical lab across town – the data will travel up to the satellites that are orbiting Africa, and then passed down through the ether to that village of mud and cement blocks and open sewers that is Sikoroni. We can partner with the community to bring water to the far reaches of Sikoroni. We can help educate the elders about HIV and they will pass the information along to the younger ones who will listen. We will have a festival of music when this work is done. We will sing about HIV and dance about HIV and learn new words in Bambara like Yellé (Light) and Hêré (Hope). We will make change. We will ask Why. We will ask Why Not.
Why sit still when there is so much to do? Why not give each child, each woman, each man a chance to live a full life, and make it possible to choose health – and to stop AIDS in Africa so that every child, woman and man have a full repertoire of possibilities for the future. That is why we go to Bamako and Sikoroni, to live amongst the donkeys and the furtive dogs, amongst the joyful children and the beauty that is Mali. That is what we can do – and we continue to ask how else we can change the world while having two feet firmly planted on that red earth. I know we can do this. We can make it so.
This story is dedicated to the volunteers for GAIA Vaccine Foundation that wash cars and bake cookies to go to Africa to fight AIDS: Caitlin, Erica, Lindsay, Maddie, Ally, Ali, Jared, Victoria, Sophie, Fiona, Megan, and of course Malick, and to our donors who
make it possible to ask “why not”.
GAIA VF is a 501c3 organization. Donations to the GAIA Vaccine Foundation can be sent to 146 Clifford Street, Providence RI 02903. Volunteers call 401 453 2068 or write Director@GAIAVaccine.orgfor more information.