With Egypt, Tunisia, Jordan and Yemen witnessing earth-shattering changes, and major U.S. cities overwhelmed with snow and budget cuts, I am spending the month in Kigali working with WE-ACTx. Obsessing on the day-to-day problems here feels at times far removed from these major upheavals. But I also sense that there are many small and big ways these global events and struggles for freedom, respect, equity and justice, are intimately related to our small project here in Rwanda.
WE-ACTx “peer parents
Pictured at the left are the WE-ACTx “peer parents.” They are a special group of WE-ACTx patients, many of whom have participated in youth leadership training. Some were counselors in last summer’s week camp program or lead younger children in games and sports during the Sunday afternoon support group at the mosque whose open space serves as our weekly congregating venue for younger HIV infected But now they are playing a new role as the leaders of WE-ACTx youth program. Youth Coordinator Henriette Byabagamba has trained them to provide family-like support to WE-ACTx patients age 12-19. Each Sunday these youngsters gather at a school called St. Famille, near downtown Kigali. St Famille has many classrooms and a large yard for soccer and other sports. During the first hour, 2 peer parents lead their group of 10-15 youth and discuss the week’s events, about school, their families and coping with their HIV, especially discussing taking their Trimethoprim/Sulfa or Bactrim (prophylaxis to prevent pneumonia and other infections) and antiretrovrials (ARVs) to fight the virus. Then the “families” join with others to form 3 larger groups and continue the discussions, emphasizing the good ideas that came up within the smaller groups. The youth then have activities including yoga, dance and soccer. Finally they all come back together, take a (somewhat) nutritious snack and receive transport money to get home.
Youth activities include yoga, dance and soccer
The older youth (20-25 years old) who are not peer parents participate in a support group for out-of-school youth led by Irene, one of WE-ACTx’s senior trauma counselors. They share their (often closeted) stories about being, in many cases, orphans, having their education disrupted during the genocide, not completing primary school, or having young children of their own and desperately needing to be working. We are especially excited that our wonderful friend and supporter Susan Moinester has started The Sylvia Feder Youth Vocational Training Program of WE-ACTx, in memory of her mother-in-law, to address some of the needs of this older group. The Vocational Program will support a two year cycle: during the first year, the program will provide tuition for the year long “tailoring” curriculum, including the required school uniforms and supplies, and food and transport; the second year, support will include start up equipment, and food and transport to help ensure the group’s new association gets underway. We will continue this cycle as the WE-ACTx counselors identify more young people who may benefit from this program. We are hoping this program appeals to donors so we can continue it as a legacy to Sylvia Feder and make a giant impact on these young people’s future.
We have designated Wednesday as Youth Clinic Day in order to organize the clinic scheduling so most of the children and older youth are seen on Wednesdays—and to make sure that day is especially youth friendly and has youth-oriented activities to meet their special needs. WE-ACTx staff conducted focus groups with young patients to find out what worked best about the clinic and what needed changing, as well as exploring the challenging issues around taking their antiretroviral mediations. What we learned is quite gripping. They appreciate the doctors and nurses and counselors and having attention. And it was their suggestion to have one day just for children and youth, so groups could share their experiences with each other. And while some felt that their medications were helping them, others stated they didn’t like having to take the medications every day or the idea of having to take medication until they died. They didn’t want to think about their HIV every day.
At the clinic debriefing this week, staff discussed some of the more challenging patients: a 14 year old who complained of having trouble taking his prophylaxis medication and getting his T cells drawn (usually done every 3 or 6 months) and described a difficult time at his home with lots of responsibilities and a troubled relationship with his mother; a17 year old currently was taking second line therapy (after the initial medication regimen was not effective) with excellent adherence and undetectable viral load; another 17 year old who does not want to return to his guardian who he has lived with since he was four, but who now mistreats him; an 8 year old who has to start ARVs but whose grandmother can‘t read and has no watch despite wanting to help the child take her medications; an 18 year old with a low T cell count who is not taking her ARVs and who no longer wants to come to clinic,having moved in with other girls who work as sex workers; and a 16 year old in the last year of primary school, who lives in an orphanage and is refusing to take her prophylaxis.
Adhering to HIV medications is, of course, difficult for everyone and especially for young people, in every country. The WE-ACTx trauma counselors, psychologists and psychiatric nurse do a remarkable job of working with the nurses and doctors to encourage better understanding of HIV and antiretroviral medications, provide adherence aids, work with peers and support groups and continue to find the ways that work best here in Rwanda. Every day we have breakthroughs both pushing the boundaries of discovery of new problems coupled with ever more creative and supportive ways to work to overcome them.
While our patients presently have an adequate supply of medications, the same can not be said of food. Nutrition remains a serious problem; even the older youth have high levels of malnourishment. We provide food at all youth support groups and snacks during the Wednesday clinic youth day, but cannot afford these at the adult support groups. This seven year old girl was new to the Sunday support play group for those under 12 years of age which is still held at the Qadaffi Mosque space. She told us she usually doesn’t eat breakfast and we learned she hadn’t eaten for the preceding 2 days. After this banana and some milk she joined her group for games.
I am always moved by the ability and commitment of the WE-ACTx staff to think of new ways to meet the needs of the patients. But sometimes the staff have problems as well. During December, one of our peer advocates was very ill. At first she was diagnosed with malaria, but then she was found to have tuberculosis meningitis. Alice was in a coma for several days, but upon starting treatment she woke up and is now recovering. She is now able to walk with a walker and getting stronger. Alice had told me many stories about Rwanda, the genocide and the political situation these days. She’s a great storyteller. She was a soldier in 1990 with the RPF, one of just a few women soldiers who lived in the mountains in the northwest part of the country with the army. So, she is a definite fighter. She is sharp as can be now, though recovery will take quite a while. When I showed her the pictures of the peer parents she declared “ah, the youth leaders, the future of Rwanda!’’
My month here has been especially fun and rewarding as Linda Mellis and Mary Fabri have been here teaching two week long classes on trauma informed cognitive based therapy. Mary has been working on this Rwandan specific adaptation of this curriculum for quite some time. The culmination of that work will be training 36 trainers to use and train others to use this important approach to reduce symptoms of depression and PTSD. . Here, Linda took a picture when we visited our long time friend Felicite (WE-ACTx former research coordinator and Girls Exchange Leader and Rwandan women’s soccer league founder) and her daughter Queenie. Sassy women can make a big difference.
Thanking you for your continued support for WE-ACTx,
Mardge
Women's Equity in Access to Care & Treatment