I traveled to Rwanda this time with Mary Fabri and Mary Black (both from the Kovler Center for the Treatment of the Survivors of Torture) and Maureen Ruder, gynecologist from County Hospital. We stopped in London to meet with the Survivors Fund (SURF), and attend Facing History Ourselves’ event with Romeo Dallaire. WE-ACTx hopes to work with SURF and Facing History Ourselves on a traveling photo and video exhibition of testimonies of women who were raped during the genocide, infected with HIV and now are getting treatment for their HIV. SURF was started by a Rwandan in Britain to provide financial support for survivors of the genocide. Dallaire, the Canadian General who led the UN troops during the genocide, emphasized the personal responsibility each of us has to Africa.
Late January in Rwanda is really hot and very dry. There has also been a serious drought in this part of Africa, so that crops like maize and beans have wilted, adding to the malnutrition. We went to Butare, a city southwest of Kigali where the university and medical school are located, to meet with one of WE-ACTx’s senior pediatricians. Walking through the market in Butare, you see and feel the broken people and the broken country. There are potatoes, plastic plates and used U.S. clothes. Nothing is colorful, except for the African fabric. No one rushes up to us ask us to buy this or that. It is quiet. When we buy some fabric, some boys in a crowd push us to buy brown paper bags for 100 francs (20 cents). These children are in a group—not with their parents. No one talks to any one. The faces are flat and sad. They look hungry.
We’re developing the psychosocial part of the children and family care and gathered lots of information from interviews and focus groups with WE-ACTx nurses and doctors and patients this week .Since October, 200 children with HIV have already been seen in the WE-ACTx clinic, and 10% have been started on ARVs because of their stage of illness. They do well on the medicines but have so many other needs. At the Icyuzuzo Association clinic, we saw two sisters, both with HIV, brought by their 53 year old grandmother. Their mother died in the past year. The 4 year old looked well and doesn’t require HIV medications yet. The 22 month old has AIDS, still doesn’t walk and spent the visit in her grandmother’s lap, sucking at her grandmother’s breast for comfort. She had a large infected blister scar from a kitchen burn on her foot that needed to be debrided. When we gave the 4 year old a pencil and paper for distraction, she seemed to be using a pencil for the first time. It was pretty tough.
Naila, who visited Chicago last December and met some of you, arranged for us to visit a family with 2 boys with AIDS during the Heroes Day Holiday this week when the clinics were closed. For the holiday, everyone fills the stadium and remembers the generals of the Rwandan Patriotic Front who died in the early 1990s, as well as survivors. As my Rwandan colleague said, the big shots talk and then go to a fancy gala and the rest of the people sit in the sun and “don’t even get a Fanta.” The newspaper reports that President Kagame called Paul Rusesabagina from Hotel Rwanda a U.S. film-made hero and not one for the true list of National Heroes.
The family we visited included the 68 year old grandmother and her grandchildren. She raised 11 children, but all have died: 4 during the genocide, 3 from AIDS, and 4 from other causes. She lives with all 12 grandchildren aged 10-28 in the house that had belonged to the father of one of the boys with AIDS. The two boys with HIV are cousins. She makes everyone 2 meals a day, alternating between potatoes and beans and cassava and beans at a cost of ~$100/month! She sometimes adds sugar to the soy corn meal from WE-ACTx . Since the boys started on medications, they are able to go to school regularly and have not been hospitalized at all in the past year. The grandmother picks up the ARVs (medicines for HIV) for the 2 boys while they are in school. The transport money from WE-ACTx is very helpful for this.
A focus group of mothers of children with HIV reinforced what we learned form the health providers and families. Everyone needs food and housing stability. Poverty is overwhelming. Food is tied to ARVs because the ARVs make people feel better and hungry. After food, people want school fees for their children to go to school. They worry about isolation, stigma, disclosure, and what will happen to their children when they die. What gives them hope to keep going? “Free medications.” “Trauma Counselors helping their spirit.” “God” “Knowing their children will stay in school takes their minds off their status.” We have big plans for children events, play groups, and, support groups.
The Research study continues in full force. Over 900 women enrolled and are now coming for their second visit 6 months after the first. Some returned in 3 months, after starting on HIV medications. County gynecologist Maureen Ruder is helping Gabriella Meredith (Chicagoan as well, in Rwanda since October) with the pap smear protocol. This week they’ve performed 27 colposcopies and treated (with Cook County Hospital resident Toni Lullo) many women with dysplasia. So we are really thrilled about how much treatment has started. The Rwandan doctors are very excited about this. Most of the women told us in a matter of fact during their medical histories that they had lost a child, either from the war, HIV, or something else.
The food and income generation in the Remera site is still my favorite space. We also have HIV counseling and testing there. But there are still difficult decisions to make. The Rwandan government insists that NGOs only provide food or supplements for 6 months to individuals. Who knows what the government expects will happen if people are not hungry for longer than that. It’s not like the government is offering job training or jobs to help people obtain funds for food. We hope to continue to increase the income generation projects within WE-ACTx and the associations we partner with and come up with some creative long lasting food programs. We may soon be working in another district clinic in the outskirts of Kigali, much more rural area, where we can try out some of these ideas.
Our house is pretty full with several interns and the crowd from Chicago. I’ve taken the cheap and crowded motor taxi (minibus) system, but prefer walking or motos (motorcycles). Most of the staff is still the same, though a few doctors have gone to train in South Africa or elsewhere. The staff have had some new babies and several more are on the way. Everyone is so welcoming as always.
The time always seems too short as there is really a lot to do. So little continues to make such a big difference. Naila said to me, smiling “I used to tell people in Chicago when they asked what my friends and family needed in Rwanda that people here want everything a person needs, but all they have is the air they breathe.”
Mardge
Women's Equity in Access to Care & Treatment