Letter from Kigali January 2016

Dear friends

Thank you so much for your generous response to WE-ACTx’s annual appeal. Your support helps continue the high quality and innovative programs of WE-ACTx For Hope (WFH), our Rwandan partner. Without your support, little of the good work and exciting progress described below could continue. Thus as I begin another new year in Kigali, I am so grateful to be able to share some news and personal reflections about the growth and strength of WFH.

Rwanda now has 70,000 people fleeing from the conflict in Burundi within its borders, most residing in refugee camps. WFH’s Youth Music Leaders (young patients with HIV who have graduated from our peer parent program who were then trained by our partner Musicians without Borders) are currently working in the Mahama Refugee Camp. Mahama is in the eastern province of Rwanda near the border with Tanzania. Musicians without Borders supports six of our Youth Music Leaders to travel to the camps and train groups of 30 young Burundi refugee community leaders who then in turn support hundreds of younger children in Mahama through music. During breaks in the training sessions, the Youth Music Leaders heard stories of loss, loneliness and fear from the Burundi young people. Many of those being trained were sent to Rwanda by their parents who feared for their safety s youth are being targeted. Others had recently seen one of their parents killed and are grieving. It is very intense as this displacement is overwhelming and reminiscent of the history of Rwanda and their own families’ stories. But the Youth Music Leaders also reported that the young refugees share how happy they feel while making music and how the music frees them, even for a short time, from their sadness and fear. Your donations and support for WE-ACTx’s youth program over the years have helped to make this possible. According to a recent report from United Nations High Commissioner for Refugees, violence around the globe has forced almost 60 million people from there homes, living as refugees or internally displaced people, the highest number since WWII. With so many people living as a refugees or internally displaced persons, it’s pretty amazing that youngsters from WE-ACTx are now part of making a difference in this disastrous global problem.

Kigali Jan 2016 1

I participated in our Youth Research Program Team 3 day workshop. We are in the fourth year of the 5 year NIH grant I described in past letters to improve adolescent adherence to antiretroviral therapy. This past week, we previewed some of the study’s data and preliminary analyses of the first 200 participants (we will finish enrollment in August 2016). Our team collaboratively wrote 6 abstracts for submission to the International AIDS Conference that will be held in Durban, South Africa in mid July 2016. Our submissions report on multiple accomplishments: better immune status at 6 months, reducing gender based violence to improve adherence, how the intervention increased caregivers HIV knowledge and reduced stigma, the effectiveness of our training approach, how the intervention reduced risky behaviors at 6 months, and mental health changes at 6 months. We are hopeful that some of these abstracts will be accepted for oral or poster presentations in Durban.

Our staff has completed the formal Family Assessment of more than 270 families with children 18 and younger followed in the clinic, and we have starting examining the results. All of the families were found to be in the lowest income levels (as we expected); but over a third report their child eats only one meal a day and is unable to pay their school fees. Over a quarter have lost at least one parent, and 15% are orphans. We looked at the relationship of these and other psychosocial variables to viral suppression (the best objective outcome to measure successful treatment for those infected with HIV). We found that a child with one parent was more than twice as likely to be virally suppressed than an orphan. In addition if the child’s caregiver reported the child experienced stigma about having HIV or reported sometimes getting so angry they physically hurt the child, the child was significantly less likely to be virally suppressed. Fortunately, the younger children are less likely to be orphans, as their parents are doing well on medications now and living longer. We are working with the staff and patients to design and implement interventions to address stigma, anger and abuse for these children aimed at improving their health outcomes and lives.

Kigali Jan 2016 2

The Children Support Groups continue to mature. About 120 older youth, (ages 14-22 ) come to St Famille every Sunday morning to play music and perform traditional dance and then discuss various topics. Some of the older youth have now been trained by the peer parents to facilitate discussions among their peers. Topics include disclosure of HIV status, taking antiretroviral medication at boarding school, and reproductive health. The younger children (6-13years) are still gathering at the Qadaffi Mosque site each Sunday afternoon, coming together for play, a nutritious snack and an opportunity for traditional dance, yoga, or modern/hiphop dance. Amazingly, there are now no children younger than 6 in our program–perinatal transmission has been successfully prevented in all pregnant women in our program since 2009. One newsworthy event is that a member of the girl’s national football (soccer) team who has recently become a patient in WFH clinic has volunteered to coach a WFH girl’s team (10-13 year olds). Any extra team shirts out there for the girls’ team?

Of course, financial sustainability is a giant issue for WE-ACTx and WFH. Although several of our recent applications for funding have not been successful (WFH did not receive global fund support that we were hoping to obtain), we are thrilled that 3 new donors have recently begun to support the work. UNAIDS, dotHIV (German organization), and AIDS Healthcare Foundation (AHF). These new donors are contributing to WFH and are supporting prevention outreach programs, SOSOMA nutrition program and some clinic staff and operational costs over the next year and hopefully in years to come. Efforts to more fully integrate into the public health system are also continuing. Having these strong donors and collaborations makes WE-ACTx’s contribution even more important as together they ensure the stability of WFH and it’s good work. One behalf of the 2500 patients we have served and the 40 Rwanda staff at our 2 clinics, we thank you.

Kigali Jan 2016 3

Finally, this is my good friend Naila (on the left), whom some of you met when she was in Chicago a decade ago with her daughter Nadia and granddaughter Malka visiting our house in Kigali. It is so nice to see them together, enjoying life and looking so healthy. Naila has been a peer advocate at WE-ACTx for many years and was one of the first patients in Kigali to start on third line therapy. I love pictures of 3 generations and hope you do as well.

Thank you for your continued support for WE-ACTx,


Women's Equity in Access to Care & Treatment