Dr. Agnes Moses and I start out at 08.30 to visit two AIDS support agencies in Lilongwe, the capital of Malawi. Stopping at ShopRite we empty the bakery of triangular meat samosas, long dark brown donuts dipped in white coconut strands and round raisin buns with sugar on top, appropriately called ‘Rock Buns’ to bring to the meetings along with two red plastic racks filled with glass bottles of Coke, Fanta, and Soba grape soda. A good meeting ends with Fanta, the Malawian version of my Jewish mother's ‘Food is Love.'
The first organization, KASO or Kanengo AIDS Support Organization, provides all of the pretest counseling at the Area 25 District Health Center and village education sessions and are vital for the success of our program to implement voluntary counseling and testing of pregnant women and nevirapine prophylaxis. With 3000 new antenatal visits per year at this site and a seroprevalence rate of 25% the program is crucial. As the members enter, Agnes tells me to answer their greetings with Ndili bwino (I am all right) and Kaya inu? (How about you?).
As I sit with Agnes waiting for the members to gather I reflect on the irony of the name ‘AIDS Support Organization'. In 1981 as the AIDS epidemic gathered force in the USA the main stream organizations sat silent and still. Red Cross, American Cancer Society, Society of the Blind, United Way, a panoply of good deed doers, all ignored the embarrassing plague and their even more embarrassing sick. Echoing the Holocaust ghettos with their Jewish self-help organizations, gay men and their supporters came together and created food and housing agencies, buddy programs, legal aide clinics and medical clinics out of thin air. They supported their clients even though the sword of Damocles hung over their heads as well. As the founders died, others stepped into their places. I had forgotten this until I reflected on KASO. All of the members are desperately ill. Harold, a former teacher and now coordinator of KASO, a handsome, articulate and earnest man with a ready but tentative smile, round cheeks, short-cropped brown hair and white, wide glistening eyes shakes my hand. His is slick with dripping sweat; I know he must have malaria, tuberculosis or far advanced AIDS. There are no medicines, no money, nothing for those with AIDS. Yet they meet, painstakingly make hand written lists of members, apologize to me that they can not stay for the entire day as they must go to a funeral and comfort each other as one by one their membership shrinks.
KASO rents a cement four-room house with an unpainted tin roof, chipped remnants of white paint on the pock marked walls and two battered windows with tattered dirty white curtains situated amid earth overrun with the towering stalks and dark green leaves of ubiquitous maize, the staple crop of Malawi from which nzima, the national dish is made. There are five chairs, an old battered brown desk and three dried grass mats for people to sit on. A black rooster with a brilliant red cockscomb wanders around in the dirt yard. On the walls are some government posters in Chichewe on safer sex, abstinence, condoms and TB prevention, some drooping over, hanging by a single piece of tape.
Despite the stifling and humid air I wear a long sleeve white shirt, Jerry Garcia tie and long khaki pants; it is the polite thing to do. At each of my meetings, whether with individuals or groups, I deliver the same stump speech with Baptist fervor. Designed to explain transmission of HIV, our program and why I am there, repetition does not dampen my enthusiasm and helps me ignore the pain and sadness in the surroundings. The women are all dressed in either faded T-shirts promoting home based care, old AIDS agencies, or drooping white cotton blouses with ruffles. Each has a brightly multi-colored wrap or chitenje around their legs and waists, some over pants. In sharp contrast to the worn dingy surroundings these are rich with green, bright yellow, and deep brown. Many wear head wraps as well. The men have black long pants and long tattered dress shirts.
Assuming that at least some of the people do not understand the issues, I find invariably everyone does. Every non-governmental organization has training and education programs. Concrete benefits like medicines, doctors or nurses are rare. The patients die well educated about their disease.
John translates for me in chunks, a natural rhythm of English alternating with Chichewa. My enthusiasm spurs me on and I speak faster and faster in longer stretches prompting Agnes to gently reach over and touch my arm to slow me down, allowing John to catch up. Later she tells me that the audience needs to reflect on my words in pieces, not paragraphs.
Only the Vice-Chair is a woman but she quietly asks almost all the questions with an ever present smile, no matter how searing the subject. Discussions in the USA and elsewhere have focused on the need to protect the Africans and educate them. In the USA we discuss fear of stigma by infected people and breast feeding mothers. All of those concepts fell like myths, one by one, with each question over the 3 hours.
`‘What if women come in later, third trimester or even later, will we help them? What if a couple comes in and the woman wants to get pregnant? How will we use KASO? What if I am counseling a man who is positive and he tells me that his girl friend has tested negative but they still have a relationship. What should I do, do I warn the girlfriend? What about transmission through breast milk? What about formula? What are the figures on risk to baby without nevirapine with breast feeding and the risk with both nevirapine and formula feeding?’’ I pointed out the risk of dirty water to the baby, perhaps greater than HIV transmission, and that this was a very controversial topic around the world. Boiling the water was crucial. I asked, ‘‘What about stigma? Would it not be bad for the mothers with young babies to abstain from breast feeding?’’ ‘‘That's not an issue if the baby's life is at stake’'.
`‘What if a mother or father is not pregnant and takes nevirapine, what would happen?’’ At first I misunderstand and thought they were interested in side effects but they meant benefits. I said that a single dose was of no benefit to either the mother or the father. All quietly nodded with the confirmation that this program would only save the baby, not the mother or father. I told them that to treat the virus you need to take at least three drugs of which one could be nevirapine. To do this currently in Malawi required about 2500 kwacha per month or 40 dollars. One woman said that in the Antenatal Clinic the clinical officers give iron to the mothers and the women take it home and don't take it. ‘‘What will we do about this problem if the mothers do the same with nevirapine?’’ she asked.
After the last question and answer the men and women clap. We open the sodas and one woman passes around the donuts and buns. Giving it to each person with her two hands extended in front they reciprocate by holding their two hands together as in prayer in the shape of a bowl, the palms pale light brown opposite the dark-skinned fingers. As we leave they simultaneously burst into song: Pitani Bwino (Go well), Mulungu (God) akuyang'anireni (look after you).
The National Association of People Living with HIV/AIDS in Malawi (NAPHAM) is located in several cities in Malawi including the Kawale District in urban, packed Lilongwe where another District Health Center is situated. This group has more money, is larger, more established. It has several rooms, with white walls and Carolina blue doors and window frames. There are many chairs and brown bookshelves line one wall. Their support groups meets on Saturday morning but they have lots of other activities during the week, including housing a huge crowd of singing and clapping orphans and street children.
Jane acts as Chairwoman and is also a member of the UNC community advisory board. I sit off to the side. The leaders of the group sit in front behind a desk, a ring of listeners around the walls and many sitting on the floor in front of me, some with quiet or breastfeeding babies.
After my speech, the questions begin. The first is from Samuel with a stricken, haunting face, and deep, dark mournful eyes. Wearing clean blue jeans and a blue shirt with white lined squares and brown shoes, he never smiles and looks unbearably sad the entire time directly opposite me.
The questions fly: ‘‘The message we are taught is that people with HIV should not get pregnant, will nevirapine encourage pregnancy and will it exacerbate the problems of orphans? How will we save and protect the orphans?’’ No one smiles here. ‘‘How long will this program last? What about rural areas? They need help as well. Will there be training? When will we start? Right now the UNC Project chorioamnionitis research study only takes some of the women, what are we going to do for the others?’’ Jane interrupts and answers the question and then adds that it would have been better to start both the research study and the clinical care project at the same time. ‘‘What about other areas like Likuni where there is no public health center? What if we do community mobilization in those areas and a woman is interested, what do we tell her to do? Will nevirapine protect the baby from infection in the womb before delivery? What about men? What are we going to do for them?’'
Agnes and I leave, both very hot and tired. Once again I have learned many lessons: that the greatest moments are those spent with people talking and listening, that preconceptions are often wrong and that distant organizations and committees should not be patronizing about either the knowledge or feelings of people in resource poor countries. All the men and women I have met have the same fears, hopes and desires that their counterparts in North Carolina have, it is just more poignant given that they are in a maelstrom of despair and disease; they love their children, they want them to live and they want to live and see them grow up.