Dear friends,
Summer is an especially exciting time for the young patients at WE-ACTx here in Kigali. On June 16 we celebrated Day of the African Child (DAC). Over 800 children, youth and family came together to acknowledge how well these young folks who are living with HIV are doing. Everyone received a new green DAC t-shirt and holiday meal. Many children performed and danced and were given awards for school achievements. Rwandan musicians including Kim from the Rwandan Music School and super star rapper Young Grace entertained.
Celebration of "Day of the African Child" (DAC)
Music has become an integral part of healing and building strength among youth in WE-ACTx. Since the summer of 2010, volunteers from Musicians Without Borders have sponsored an exciting intensive training program for WE-ACTx youth leaders. (see http://www.newtimes.co.rw/news/index.php?i=15008&a=54189) Musicians without Borders (MwB) is an international organization that uses the power of music to connect communities, bridge divides and heal the wounds of war and conflict. This year they sponsored two 2-week workshops and have scheduled a 3 week workshop for late July-August. The workshops focus on singing, voice training, drumming, songwriting and teaching for WE-ACTx peer parents who will lead Sunday support groups, camp groups and other groups in the future. Collaborating with MwB, and getting to know musicians Danny Felsteiner and Fabienne van Eck (from Israel), Joey Blake (from Boston) and Laura Hassler (from the Netherlands), has been very inspiring for all of us at WE-ACTx. MwB has also connected with local musicians at the Kigali Music School who now provide weekly trainings for WE-ACTx youth leaders. A celebration of this work was held in April for our patients and their families and was supported by the Dutch Embassy.
The WE-ACTx youth leaders are among 600 youth under 24 years of age seen for comprehensive HIV primary care in the 2 WE-ACTx clinics (downtown Kigali and the more rural public health center in Nyacyonga). We are extremely fortunate to have two new sources of funding for the nutrition and retention aspects of our youth program–from the Rotary Club of Kenthurst, Australia and the Boston based Robert F. Meagher Foundation. These only partially make up for the loss of the Ronald McDonald House Charity funds, but broaden our donor support base to include these and other new caring and interested groups.
WE-ACTx now follows 2,400 patients with HIV. As of July 2012, 70% of these patients are taking antiretroviral medications, which they begin (per Rwandan Ministry of Health protocol) when their CD4 cell count drops below 350 (reflecting suppression of their immune system). The current U.S. recommendation is to begin treatment earlier in the course of HIV, at a higher CD4 cell count of 500, before marked immune suppression, in order to reduce morbidity and mortality. Rwanda and most countries in sub Saharan Africa however are not able to afford this approach and they follow WHO recommendations to begin therapy at CD4 of 350.
Adherence to lifelong antiretroviral therapy is of course a serious challenge for all persons with HIV wherever they live. The Rwandan Ministry of Health now requires patients with HIV to be seen by a clinician every 3 months (increased from every 6 months) to promote better clinic retention. Patients get their medications monthly. About 85% of WE-ACTx patients in Kigali are doing well with improved and higher CD4 cell counts, returning for appointments regularly and tolerating their medication without too many side effects. This is an extraordinarily high retention rate and a reflection of the hard work of WE-ACTx staff and patients. About 10% of patients in WE-ACTx with CD4 counts < 350 but not on medications, have a difficult time overcoming obstacles and starting their antiretroviral therapy (coming late to care and being very symptomatic, poverty, stigma, fear of medication and side effects, incarceration, and unstable housing. And 10% of those on antiretroviral therapy need more help staying on their medications. One of my routine jobs here is to review our data base and identify those patients who need to be reached by phone (for a few), at monthly Trimthoprim medication pickups, or with home visits to begin medications or reinforce better medication adherence.
The best news is that no babies have been born with HIV at the Nyacyonga clinic (where we have our prevention-mother-to-child-transmission program) in the past 4 years. The Nyacypnga post-partum jewelry cooperative Ejo Hazaza (which means tomorrow) continues to thrive and is currently finishing a huge order of beaded bracelets for Indigo Africa. We currently have 4 children 2 – 4 years of age in Centreville Clinic, the youngest enrolled last month and was born to a mother who hadn’t been tested for HIV during her pregnancy Our hope is there soon will be no more young children joining the Sunday Qadaffi support group. But this achievable goal is running up against other storm clouds. For the last few months, the WE-ACTx clinic and every site within the Rwandan public sector have had few condoms to distribute. And even sadder is the report from 3 young girl patients under 12 that they were forced to have sex, reminding us again how very unfair and difficult their lives are and how much is needed to help them and to stop gender based violence.
Learning Yoga on the beautiful new mats
This summer has seen a return of some of our veteran volunteers and supporters. Gia Marotta and Chloe Frankel, camp creators from 2009 are back (Gia hasn’t missed a year yet!). Ten students and 2 teachers from Latin High School in Chicago have raised over $18,000 to support the two summer camps in town and in Nyacyonga and will arrive in Kigali next week to visit and help staff the camp for the first week. This will be Latin’s third summer with us. Margot Moinester has returned for a third summer to concentrate on the income generation programs related to Manos de Madres.
And another group from the Evanston Jewish Reconstructionist Congregation (JRC) has returned (with 4 repeaters) to learn more about and help WE-ACTx. They brought 45 yoga mats for our children’s yoga program. Here’s Joseph, a youth leader who has been trained by our partner group “Project Air” and who loves to teach yoga. The children can’t get enough of his tricks and moves and are really excited about learning yoga, so the beautiful new mats were a big hit.
There is something very special about supporters coming back a second and third time. The commitment makes a difference to those who return and those who see them again. Pictured here is the completed new library (which began as a bat mitzvah project by one of the youngsters in the group) at the WE-ACTx clinic: The JRC crew painted, decorated and stocked it with books You can read more about their time in Rwanda on JRC Rabbi Brant Rosen’s blog (Rav Shalom http://rabbibrant.com/), from which I copied the yoga photo.
New Library within WE-ACTx clinic
The political situation here is tense. At this moment there are reports of a troop buildup in Goma though most people are not talking about it. The recently released UN report claims that the Rwandan government is backing the rebels in the Eastern part of the Congo. These claims are being denied by President Kagame. The NY Times and other media in the states are expressing concerned about continued political repression in Rwanda and Rwanda’s continued presence in the devastating and prolonged war in the Congo.
Yet some prospects for progress and international cooperation continue to look good. Next week several of us will be leaving Kigali to attend the International AIDS meeting and represent our project in Washington DC. Chantal. WE-ACTx clinical coordinator and Henriette, Youth Program Leader, will present a number of posters that have been accepted for presentation at this meeting. We are looking forward to sharing our work with others caring for people with HIV all over the world. Just as HIV knows no borders, we find it hard (and not really desirable) to compartmentalize the different aspects of our work in Rwanda. We are hopeful that better health, HIV drug treatment, our preventive efforts, along with addressing gender based violence and empowering young people will make a difference.
Thanks again for all your continued support.
Mardge
Women's Equity in Access to Care & Treatment