This WE-ACTx trip has been filled with incredible sadness and terrific excitement. Two of the WE-ACTx staff (Claudine, a 19 year old peer and data enterer, about to start at the university and Chantel, a 29 year old nurse pharmacist, mother of 3) were killed in a horrific bus accident caused by a UN truck coming from the Congo in the western part of the country. The suddenness and great loss has been overwhelming and shocking for the families and the entire staff. There has been tremendous bonding and caring and support among the WE-ACTx staff and for the families, but it all seems so unfair.
On the 2 1/2 hour journey to Gisenyi for the ceremony concluding the 8 day mourning period, I was struck again by the beauty of the countryside, in such sharp contrast to Kigali’s increasing congestion by international NGO’s fuel guzzling SUVs (not WE- ACTx!). But I was most moved by the commitment of the staff for their departed friend and co-worker’s family. As for the grieving families, they kept their anger hidden and relied on strong religious feelings in accepting the tragedy.
Even in death the genocide still lives on. Claudine was the daughter of a wealthy Hutu man who had taken a second wife (Tutsi) as was the custom apparently decades ago to show how wealthy and powerful you were. When her father died, the property all went to his first wife (Hutu), and Claudine’s family had nothing. Claudine’s mother has suffered in many ways. Now, though, the law allows the children in these situations to share the property of their father, and that was beginning to happen before this tragedy.
Though the loss has affected everyone (staff and patients) deeply, especially at the Centre Ville clinic where both Claudine and Chantel worked every day, it has been particularly hard for the young people in our program. Claudine, a super star fluent in English, French, Swahili, and Kinyarwanda and always ready to take on every next challenge, taught the Sunday morning computer classes and helped the younger children at Sunday support group. She was to be part of the Rwandan Girls Exchange Chicago ßà Kigali, one of the 6 Rwandan girls picked to travel back to the states with the 6 Chicago girls and 2 leaders who will arrive in Kigali Sunday, July 20 (http://weactrwanda.blogspot.com/ is the girls blog which has early mural pictures & this url is a pre trip newspaper article http://www.suntimes.com/lifestyles/health/1035047,CST-NWS-rwanda02.article). The 5 remaining Rwandan girls are so sad, but committed to growing strong and proud as they travel with the Chicago girls. The group will make a phenomenal mosaic mural for the CORE Center in Chicago and the Nyacyonga Health Center in Kigali and dedicate it to Claudine.
Chicago JRC visit
This is the month for Chicago visits to WE-ACTx. Twenty-four people from the Jewish Reconstructionist Congregation (JRC) visited Rwanda and WE-ACTx this past week. The JRC group has been extremely generous to WE-ACTx for years, and this trip allowed them to see first hand many of the programs and people they have supported. Armed with Kinzer’s new book “A Thousand Hills” and many ideas, questions, desires to work and help, and more support, they visited each of the WE-ACTx clinics. They said Kaddish at the Genocide Memorial and at a Church site of genocide in Nyamata. They saw the recent improvements in Nyacyonga Health Center’s maternal and child health section with a more coordinated approach to prenatal, birthing and post partum units.
Demonstration of Growing Boxes
They brought 30 growing boxes and trained 10 partner associations to use the system for planting tomatoes and cabbages. They heard how men in the men’s support group have started growing mushrooms for income generation. Some took side trips to learn more about Rwandan agricultural challenges. They listened to Rwandan partner association leaders and patients talk about the high costs of fuel, food, and life. They went on home visits, bringing much needed food packages, and did yoga with the Ineza Sewing Collective. They thought about reconstructing an entire society after the genocide.
The youngest members of the group spent time helping in the pharmacy and getting to know the young Rwandans in the computer class and the Girls Exchange. They brought many new activities to the Sunday Support Group. The entire contingent was a dynamic group and WE-ACTx staff and patients warmly welcomed them. Some WE-ACTx staff had spoken at JRC during a Chicago trip, so friendships were recharged, and new ones were made. Everyone here in Kigali was very moved by their commitment and empathy.
Getting to know the girls
We hope the trip measured up equally well for the JRC group. Murakoze cyane, cyane. We are seeing definite improvements among the children with HIV on antiretroviral medications (ARVs) . Last year 58 children were hospitalized, this year there were 13 (most for malnutrition, TB and malaria). With the Sosoma nutritional program, children are gaining weight and doing much better on ARVs. The Sosoma supplemental program costs $16,000/year for 100 children and their families each year. Yet, when the JRC group went on their site visits they learned that some of these families with children on ARVs and on Sosoma had other problems. A young girl came home during the visit and said that report cards had been distributed. When they asked to see hers, she started crying and shared that because her mother hadn’t paid the school fees, they hadn’t let her have her report card.
Sunday Support Group
Upon investigation, it turns out that the 100 children on ARVs and Sosoma are all in primary school, even those around 15 years of age. The Rwandan government has declared that primary schools are now free, but they have not provided the financial support needed to run them. So the schools still need “parent donations” of about $20/ year. But since it is not an officially sanctioned fee, all the USAID funded programs and other large international NGOs will not pay the donations, and will only give school materials and supplies. So we’ve identified another definite need—ensuring that HIV infected kids on ARVs and Sosoma get their school fees paid. For every 100 kids, that would be ~$2000/year, each year until the children finish primary school.
In terms of mother to child transmission prevention at Nyacyonga Health Center, there has been only one infected child of the 30 pregnant HIV women identified and followed recently, and that woman hadn’t been tested prior to her pregnancy. Much of the clinical care in all 3 WE-ACTx clinics has been standardized and improved with the help of Lauren Cohen, a Chicago area nurse who has worked with MSF (Doctors without Borders) for most of the past 4 years. She has worked with us for 6 months and will sadly be leaving to work with MSF again, this time in Cambodia. She will train a senior Rwandan nurse over the next month and we are confident the good work will continue.
This summer the house is filled with bright talented young folks—always stimulating. The interns are working on school fee programs, youth projects, the income generation program (Ineza sewing collective) and a legal handbook on children’s rights.
In a couple of weeks, 3 Rwandan WE-ACTx staff (including peers) will join me and thousands of others in Mexico City for the International AIDS meeting. They applied and luckily received scholarships for their airfare and hotels. We have been accepted to present and have prepared posters and oral sessions on WE-ACTx’s Sunday children’s support group, the peer advocacy program, depression and PTSD improvement on ARVs, and the income generation program. Everyone will have the opportunity to learn about other programs all over the world and innovative approaches to HIV prevention and care.
The best part of these international AIDS meetings is the energy created by HIV infected persons and advocates fighting for full access to drugs, health care, food, and human rights for all women and men and children with HIV all over the world. Yet, even as our clinic cheered when we learned that the prosecutor of the International Criminal Court asked for an arrest warrant charging Sudan’s president of committing genocide, we know we need a sustained international movement to make governments and others respond to genocide and HIV. I so wish Claudine and Chantel could have been with us longer to help in this struggle.
Thanks as always for all your support,
Mardge
Women's Equity in Access to Care & Treatment