Dear friends
As we followed the election tensions in Rwanda including the arrests, grenades and murders over the past few months, I worried how things would feel when I returned to Kigali this summer. We were especially concerned, bringing over 8 Chicago high school students. However, for the past few weeks the city has been quiet except for major campaigning by Paul Kagame and his party. The opposing candidates who have been allowed to stay in the race seem to be there more for show than as outspoken opponents. Kagame is expected to be re-elected on August 9 by an overwhelming landslide. Every day there are loud bullhorns and trucks with music, rallies, posters and banners, and hat and T shirt distribution to support Kagame and the RPF. There is much to contemplate and discuss about the political situation here and the challenges it raises both internally and externally. But that is best done in face to face discussions and in the future. For now, I’d like to update you on WE-ACTx work which in so many ways depends on you.
Chicago Latin High School students with WE-ACTx clinic campers
One of the most exciting WE-ACTx activities this summer has been our second annual camp for youth on vacation from school. Fifty 12- and 13-year old patients with HIV who we follow in the WE-ACTx clinic are the campers. Nine Rwandan peer youth leaders (17-24 year olds trained last summer and this year by U.S. volunteers and 2 of whom participated in the WE-ACTx Girls Exchange in Chicago in 2008) are the senior counselors. And eight Chicago Latin High School students raised the $10,000 needed to run the camp, came to Rwanda for 2 weeks and acted as junior counselors for the first week of camp. They were accompanied by their teacher Ingrid Dorer and WE-ACTx Chicago coordinator Linda Mellis. The camp was planned and coordinated by Gia Marotta and Noam Shuster (who also spent last summer in Kigali), with help from Sophie Cohen. Friends of WE-ACTx had connected us with a team from Musicians without Borders (Fabienne van Eck and Danny Felsteiner, from Holland and Israel) who complement this amazing group of energetic and conscientious volunteer staff. Campers gather from 8 AM – 3 PM, receive daily transportation support, a full lunch meal and water bottles. The music, dance, soccer, theatre and art activities are very well organized and fun, but the bonding and sharing and joy is palpable and contagious. This week’s field trip was a safari to Akagera Park, a first for the Rwandan kids.
Synergy of global forces make the camp special
Rwandan HIV protocol recommends that all children with HIV be informed of their HIV status by age 8-12, with attention to individual emotional development. The WE-ACTx campers know they are HIV infected, but not one had told any of their friends at school about having HIV. Half have lost one or both parents to HIV. It’s a heartwarming thrill to see these children enjoying themselves, especially since they rarely get a chance to play so freely. But it’s also particularly exciting to think about the synergy of all the global forces that helped make the WE-ACTx camp so special and meaningful for all the campers and staff this summer. The motivation of the Rwandan youth peer leaders is growing daily, and that will continue to inspire the U.S. high school students. Many are insisting they will be back and continue their support. Latin High School has made a commitment to support the camp next summer as well. And the campers are gaining confidence without hiding their HIV status which will be important when they return to school and as they continue to cope with their HIV infection.
The WE-ACTx clinics currently follow 3880 persons with HIV, including over 600 youth. At Centreville, where we care for 3300 patients, the adult women have more advanced HIV, with 43% on antiretroviral therapy (ART) compared to 25% of the adult men. Of the ~1200 adults on ART, 25 are on second line therapy (i.e resistant to first line, more affordable drugs). Attendance rates coming to the clinic and picking up monthly ART treatment and CD4 cell counts tests show exceptionally good adherence compared to international and U.S. benchmarks. We have noticed, however, that older youth 17-22 have difficulty reducing high-risk behaviors and adhering to clinic visits and their medication (this is a problem in the states as well!). Our recent efforts to seek resources to increase youth friendly and enhance girl-specific treatment interventions are to address this difficult challenge.
This summer a graduate pubic health student from Brown University conducted an evaluation of our support groups and found that of 157 women attending WE-ACTx support groups, >85% came weekly. Since joining the support groups, 90% of the women reported disclosing their HIV status to their partner or child and 50% noted a more consistent approach to taking ART. The weekly groups provide an important support system for these women — more than 89% reported feeling less sad and lonely since joining the support groups.
When asked for additional suggestions, the women asked for income generation training to be part of the groups. These women are part of a new group learning how to make cloth beads. The patients praised the counselors who facilitate their support groups for helping them to better understand HIV, feel stronger and more confident and adhere to their medication.
Women making cloth beads for income
The staff of WE-ACTx deserves enormous credit for all of our successes. There has been very little turnover among the extremely committed and hard working providers: nurses, counselors, doctors, peers and others. I sense that the staff has learned so much from the patients in addition to the patients feeling supported by staff—the way it should always be.
We were also gratified (and quite a bit relieved considering how precarious our next two years budget/shortfall looked) to learn last week that it is likely we will receive another round of funding from the Ronald McDonald House Chartity foundation. Although we are still awaiting the official announcement, this is an enormous show of support for the youth and other programs. It is especially meaningful because the Foundation will allow us to try innovative peer programs for the most vulnerable youth in our program.
But a sad story to end on. These stories invariably seem to arise each time I start to put one of these letters to bed, and obviously remind us why we are here, and how our continuing work is so needed. Yesterday, I visited the home of one of the women in the WE-ACTx Ineza sewing collective. She had been traumatized during the genocide, became infected with HIV, and was deserted by her husband. But she had been gaining strength and doing well. She finished her schooling and obtained a driver’s chauffer license. She was also, inspired by our yoga volunteer program, training to be one of the Rwandan yoga teachers. Sadly, she was hurt badly in a moto (popular motorcycle taxis) accident and required an above the knee amputation 2 months ago. Since then, she has had to send her 11 year old daughter to her mother in a rural area as she was unable to care for the child herself. She is very depressed about losing her leg, and is finding it very difficult to make her clinical appointments. She eats poorly and just recovered from a bout of malaria. It was a hard visit, but we encouraged her to use her confidence and strength to overcome this tragedy and of course we will seek to provide needed resources for medical and living expenses. It seems so unfair that one person should have so much to deal with. But of course road traffic deaths and injuries are common and increasing in developing countries (and are predicted to surpass HIV/AIDS by 2020 as a burden of death and disability) that it should not be surprising that she would have to face this next challenge. Not surprising, but not fair—leaving much work to be done on many fronts.
Mardge
Women's Equity in Access to Care & Treatment