Dear friends:
Before I share my thoughts and news from this visit to the WE-ACTx project in Rwanda this month, I wanted to thank each and every one of you for your generous big and small end-of-year contributions to WE-ACTx. They all add up, to a sustained and (as you will read) continuously growing and expanded reach for our efforts here. Not only will these help support our essential activities but we have leveraged your support to accomplish several new special projects.
Sunday Support Group with Chris Nicholson music therapist
Soon after arriving in Kigali earlier this month, I joined the Sunday support group, held at St Famille School. For the past 5 months, Chris Nicholson, a music therapist from England, has been working with us for his Masters third year placement. Chris is an experienced musician and a total gem. He uses Music Therapy to provide an important expressive space for the youth and conducted 4 weekly sessions for a variety of groups of young patients. I hope you can see the drums, sticks, bells, tambourines, and other instruments used to explore what it feels like when the youngsters voices are not heard or feelings not acknowledged within groups. Chris discovered WE-ACTx through Musicians Without Borders, a group which has been working with WEACTX for the past several years providing music workshop trainings for our youth leaders .
The joy of the music was quickly arrested when, later that first week I learned that one of the peer leaders (L.) was being held at the Remera Police Station. I accompanied Aime, our youth peer advocate, to the jail to see L., who was held on charges of having an “illegal abortion.” While a new “liberalized” law passed last year allows women to go before a judge to “ask” for an abortion in cases of incest, rape, forced marriage or endangerment to mother or child, abortions are otherwise illegal and punishable with prison terms of 5 months – 6 years (previously 10-20 years!). We waited to speak to L. She was led out handcuffed, and though glad to see us, she soon broke down sobbing. She had gone to a neighborhood clinic after she started bleeding. Someone there accused her of having had an illegal abortion; the police were called and took her to the police hospital and then to the jail. L. is 23, had a child 2 years ago, and has been on birth control pills since then. She had no idea she was even pregnant (still not clear). We attempted to secure her release but it was impossible. The police stated they were awaiting the hospital report to determine whether she would be prosecuted. It looked like the hospital report would clear L., and she would be released the next day.
After another two days, we contacted a lawyer through friends/colleagues and he told L not to talk to the prosecutor without him. He discussed the case with the prosecutor to avoid having to go the court. The lawyer’s standard pretrial fee is $500 (an enormous sum of money here where people typically earn <$2/day). If a trial was scheduled, the price would go even higher. After attempting to bargain down the fee, I learned that this lawyer was actually an extraordinary outspoken advocate for women’s right to abortion in Rwanda. He stayed on this case and we paid the $500. But still additional days passed, and L. was still not released. After many conversations and delays, the lawyer told us the prosecutor was almost finished, he just needed to “check some facts with the community elders and neighbors,” as there were some problems between L’s family and the neighbors. What did this false accusation of getting an illegal abortion have to do with the neighbors I asked? And then the answer came, one that is often the answer when things don’t seem to make sense in Rwanda. Was it stigma from HIV? No, he said, it is the genocide. L.’s neighbors were retaliating because her family had given evidence against their family members who were imprisoned for crimes during the genocide. It took another few days, but after 13 days in jail, L. was finally free. We celebrated, but are sobered by the many issues this has raised. And the release came on the 40th anniversary of Roe v Wade!
“young mothers” group, a weekly support group facilitated by our trauma counselors
L. is a member of the “young mothers” group, a weekly support group facilitated by our trauma counselors. As part of a newly funded initiative to address the many challenges faced by these women, we held a focus group and introduced the women to a visiting volunteer social worker spending the next 3 months with us in Kigali (her husband is a pediatric surgeon training residents at CHK, the public hospital in Kigali as part of the U.S. university training consortium). The young mothers group is comprised of 13-16 women ages19-27. They each have 1-2 children aged 1-13, and one is currently pregnant. Only one completed high school, most of the others stopped before the 9th grade, often when they had their babies. Several said their pregnancies followed rapes; and many were under 16 when they became new mothers. Only one has an infected child. All are single and very poor. One third have CD4 cell counts below 300 (meaning they are significantly immunocompromised). All have been prescribed antiretroviral therapy, though adherence is inconsistent. Some live with family members or rent rooms; but almost all feel like they don’t have a room of their own. Many of their families either do not know or else reject them because of their HIV status; other family members don’t believe they were actually raped (shades of Republican politician beliefs). Naturally they all want stable housing, the ability to pay their children’s school fees, and jobs. And we are working to help. During 2013, this group of young mothers will now have support and assistance to work together to problem solve, gain skills, help each other, and plan for a better future for themselves and their children.
I am pleased to report two new positive developments that we have achieved, making this a very exciting time for WE-ACTx.
"WE-ACTx for Hope" Rwandan NGO colleagues
First, our Rwandan colleagues have now completed the legal transition from being part of an international NGO to creating a new officially recognized organization–WE-ACTx for Hope. As an official local NGO partnering with WE-ACTx, WE-ACTx for Hope will manage the clinics, support services, and income generation projects. This will allow the local organization to solicit additional funds only available to local NGOs. Organizations like Australian Rotary (I met our dear Australian friends Sue O’neill and Graham Taylor in Sydney this past November!), which supports the nutritional supplement SOSOMA program, only donate to local NGOs and thus will be able to support our work. In addition to this potential financial benefit, this change allows us to better connect our work here to the local women’s associations and the government giving additional recognition, status, and (hopefully) sustainability to the program.
The Board of Directors of new WE-ACTx for Hope NGO is very strong, and is led by our long time friend Felicite Rwemarika (who some of you may have met in Chicago). The first all-staff meeting with the Board took place this week and contracts with raised salaries (lowered last year because of reduced funding) were announced.
The other big news is that the U.S. NIH Institute of Child Health and Development (NICHD) has awarded us a 5 year grant to conduct a randomized control trial to evaluate an intervention to improve adherence among HIV infected youth aged 14-21. We worked hard to write this grant, and had been hanging on a cliff (fiscally and figuratively) for the past few months, uncertain if we would actually receive the funding. The centerpiece of the project is the training of Indigenous youth leaders to conduct an enhanced trauma-informed CBT (cognitive behavioral therapy) intervention delivered via 8 weekly sessions with groups of 8-10 younger patients. It represents an innovative approach to address the serious challenges to medication adherence (depression, gender based violence, logistics and problem solving) in our patient population.
The research collaborative effort leadership includes Dr Sabin Nsanzimana, Head of the Rwanda Division of HIV/AIDS, STI, and Other Blood Borne Infections at the Rwandan Biomedical Center under the direction of the Ministry of Health, and Dr. Geri Donnenberg, who directs the Healthy Youth Program and the Community Outreach Intervention Project at University of Illinois at Chicago. Mary Fabri, the WE-ACTx Mental Health Director, will help design, implement and supervise the CBT intervention. This grant greatly strengthens WE-ACTx for Hope and facilitates our contribution to improving the health of young people with HIV in Kigali as well as develops, what we hope will be an international support and adherence model.
So as you can see, there is much to do to provide high quality comprehensive care to patients in WE-ACTx for Hope, and there will be no end to new crises. But the staff and patients are moving forward. l continue to learn and with the staff and colleagues here (and your continued support at home) will use all of the lessons from the past 9 years as we embark on these exciting new projects.
Thanks again,
Mardge
Women's Equity in Access to Care & Treatment