Dear friends,
Road to St. Famille School, near downtown Kigali
Very busy summer in Kigali for WE-ACTx as usual. Our house is bustling with young volunteers, scores of visitors, preparations for new holiday children’s camp in Nyacyonga (the more rural WE-ACTx clinic), counselor training for the new 1 week Nyacyonga and 3 week Centreville youth camps, juggling new income generation programs, preparing youth specific HIV educational brochures, and the upcoming work trip by 11 Latin high school students (4 are returnees!) and their 2 chaperones. While our house hasn’t changed much over the 7 years we have been working here, much has in Kigali—more paved roads, more high rises and tourist type malls, more Asian ex-pat restaurants, more patients with cell phones, international film festivals, and greater English facility by our younger patients.
Sunday School Family Groups
We’ve divided up the youth programs: so children under 12 still gather and play at the Qadaffi Mosque Sunday afternoons, but older youth now meet earlier at a different site in a school associated with St Famille Church, near downtown. During the genocide, hundreds of Tutsis were murdered in this church, the largest in Rwanda. On April 15, 1994, many Tutsis who had sought refuge in the Church were turned over to the Interahamwe militia by the Church’s priest. In this picture, you can see the road we walk down to get to the school at the lower right. Contrast this with the large Kigali City Tower in the back on the right, a soon to be opened new tourist mall. On the left, the other skyscraper is the National Social Security building.
Though it is almost impossible for me to scramble down the steep hill and stay upright, over 170 young people manage to and meet each Sunday with their “family groups.” They discuss the week’s challenges the first hour, then join with others for a larger general discussion. Activities follow and then a snack and distribution of transport money. Here the yoga teacher volunteers have brought hoola hoops–clearly a huge success. We plan to continue our efforts to increase adherence and autonomy among these youth—one of the most challenging and rewarding parts of our program
We have exciting news on the income generation front. Ineza continues to thrive and improve on the quality of their beautiful products that many of you have purchased (and remember, we are always looking for folks to host a house party to learn about WE-ACTx and give these crafts for donations). But now, in addition, there is a jewelry making collective at Nyacyonga (called Ejo Hazaza and made up of women who went through the WE-ACTx’s perinatal program to prevent HIV transmission to their infants) and a silk-screening group (called Dutete, made up of women from many WE-ACTx support groups), and the group of vocational school students studying tailoring who will start their internship under Ineza’s tutelage in October. With the help of Emily, our incredible Peace Corps Volunteer, we expect a coming together of all these efforts as Hjo Hazaza’s jewelry are packaged in bags made by the students under Ineza’s direction, with silkscreened labels by Dutete’s members. We also thank Susan Moinester from Manos de Madres, Abraham Kong’A, a Kigali artist, store-owner, and teacher, and Helen from Kenya who built the kiln out of a trunk and taught the women in Hjo Hazaza to make beads and create designs out of recycled glass, for their help in starting these exciting efforts.
In the clinic, we continue to work on antiretroviral adherence and follow up. We are particularly concerned about the youth who are on second line therapy and still have so much trouble with adherhence. At the quarterly association meeting last week, leaders told us that many members are finding it too difficult economically to stay in Kigali and are moving out of the city and may stop coming to the clinic for their medications. This year we are prioritizing helping parents inform their children aged 8-12 with HIV of their HIV status, which is the protocol in Rwanda.. This is a very difficult issue for families everywhere. Of course, preventing HIV transmission from mothers to infants will eliminate this problem worldwide, and Rwanda is doing well with its perinatal HIV programs. HIV counseling and testing and antiretroviral therapy is accessed by a high percentage of Rwandan pregnant women. The Rwandan protocol also includes breast feeding until 2 years of age and administration of antiretroviral prophylaxis to all children born to HIV infected women to prevent any post partum infections..
Children don't always know they are infected
Of the 150 children in WE-ACTx aged 8-12, only half have been told that they are infected by their parents. Some parents tell the children the medications are vitamins or to help them grow. Many parents feel guilty, or do not want to face their children’s questions and anger when they tell them that they are living with HIV. Some feel the children will tell others and that the whole family will suffer from stigma. We have started a Friday morning disclosure support group for mothers to talk with each other and WE-ACTx counselors about the best strategies for disclosing to their children. This past week, 33 mothers attended, and 1/3 had not yet told their children. They learn from mothers who have shared the news with their children and receive support as needed from the counselors. Some of the children knew their status before their parents get around to telling them. The children in this age group attend our Qadaffi support group every Sunday afternoon. It is a time to be free to sing, dance, run and play, and be the precious children they are.
Where next? Obviously sustaining our core activities remains our highest priority. We have written grants for an innovative youth adherence program using peer led support and CBT and telephone text messaging for medication and appointment reminders. We are excited that the Rwandan government’s TRAC clinic is partnering with us on this proposal. Personally, I am awed at the way new needs and innovative solutions continue to arise from our staff and patients. It is the thirtieth year since HIV was first reported and we are still figuring out the connections of passion, science, and advocacy Thanks for being part of this journey with us.
Mardge
Women's Equity in Access to Care & Treatment