Writer Ken Carlton created a lovely photo essay to tell the story of WE-ACTx. If you’d like to read it and see the pictures, his blog is found at this address:
http://kencarlton.net/ramenblog/2015/2/21/can-anyone-really-make-a-difference
2/2/15 Heroes and Schools
Dear friends
Today is the celebration of Heroes Day in Kigali, a national holiday every February 1st, to honor heroic actions of those who died for Rwanda during the genocide. The WE-ACTx For Hope clinic is closed, as are all schools and most businesses, so I am able to pause and share my thoughts and updates below. There are local memorials and gatherings held throughout the country which commemorates heroic acts such as those by the students at Nyange Secondary School who during the Rwandan genocide refused to identify the Tutsi students, and as a result of this courageous act were all killed by the rebels.
This is the first year there wasn’t a national ceremony at the stadium; instead there is a Heroes Day tennis tournament underway, which some of our friends went to yesterday, along with a national Heroes Day hoops tournament (basketball). Although many of you know I am not a big sports fan, there is something very healing about recreation taking the place of massacres and memorials as the pre-occupation of the day.
In Rwanda, the extended school vacation now runs through November and December, ending later than usual this year, with the school year restarting on January 26. Like in September in the states, school supplies are bought, school uniforms fitted, and families prepare their students to start schools. However, while most youngsters attend primary school, fewer go on to secondary school. Publicly funded secondary school is more costly and tracked. Only those who score highest can go to the better schools, including boarding schools; others who do well can attend second tier schools (these cost about $200/term including uniforms and materials). For those with lower scores or who can’t afford these secondary school fees, there are less expensive and lower quality “9 year” and “12 year” schools. Private academic and vocational schools are even more expensive.
As the young patients in WE-ACTx For Hope (FH)clinic continue to do well and feel stronger physically, more want to attend secondary school, as do those older youth who never completed their schooling when they were younger. So every year we face the annual dilemma of how to respond when these students come to the clinic asking us to help pay their school fees. While WE-ACTx FH does support students in a variety of ways, we no longer have any specific grant for school fees. We are hoping to change this. WE-ACTx FH has applied (and hopefully will hear in the next month) to be included in a country-wide program to help support school fees for vulnerable children. It seems tragic to waste the talents and learning lives of these precious children for lack of these low-for-us, but too-high-for-them fees. Of course this year, we again dipped into our own pockets and the clinics’ stretched budget to support those who came asking for school fees last week in order to start the school term.
This month, the WE-ACTx FH staff was very discouraged when we learned that two 14 year old girls attending the clinic were pregnant. One described her relationship with her boyfriend, which began when she was 11 and he was 17. When she told him she was pregnant, after the clinic nurse took a pregnancy test, he moved away and is no longer reachable. The other girl lives with a guardian, as her parents died. She reported having sex with a 20 year old neighbor who bought her things, and then with his older brother, who didn’t use condoms. Neither of these 2 girls realized they were pregnant. Now both are prohibited from attending school until after the babies are born. In Rwanda it is illegal to give contraception to girls under 18, though education about reproductive health is now allowed. We are working with the WE-ACTx FH staff to determine if any red flags were not recognized in these young girls, and whether they can be more alert to warning signs in other young patients. Increased efforts towards small group discussions of reproductive health issues and ways to promote respectful and responsible male behavior are underway.
On a more uplifting note, the number of patients on antiretroviral therapy at the WE-ACTx Clinic has increased as Rwanda has started following WHO guidelines to treat people with HIV with CD4 cells < 500 (previously patients had to have CD4 cells < 350 to qualify for treatment). Currently 2069 of the 2400 patients followed by WE-ACTx FH are on antiretroviral medications. And a remarkable 84 % of these patients have undetectable viral loads. This high number of patients with viral suppression speaks to excellent adherence by those attending the clinic, a testament to both staff and patient efforts. Older patients have the best adherence, with almost all those over 55 having fully suppressed viral loads. Younger patients including those born with HIV who have been infected for a long time tend to have higher rates of unsuppressed virus. We continue to use a Direct Observation Therapy (DOT) strategy for those with the most advanced disease progression to promote adherence.
We are excited to have just hired a new full time Rwandan physician who is both a wonderful clinician as well as someone with the skills and interest to help us monitor quality and develop new programs as needed.
Finally, I want to let you know how Pretty is doing. I’ve written about her previously as a bright young teenager who unfortunately had a stroke when she was 16 (from vasculitis secondary to her HIV) which left her unable to speak or use her dominant right hand (see the photo of her working with our music therapist Chris in my January 2014 letter from Kigali archived at www.we-actx.org). Finding a school for her has been very challenging. She was told by her previous boarding school, where until she had the stroke, was one of the top students, that she could not return because she had lost the ability to speak and couldn’t independently take care of herself. Pretty’s mother and staff at WE-ACTx have spent 2 years trying to find a school in Rwanda which would accept her. After first being rejected, she is now enrolled in Senior 4 (similar to 10th grade) at Gatagara Secondary School, the only high school for physically disabled students in Rwanda. It has 400 students, including some who are hearing impaired and some using wheelchairs. The school is located in Butare, a 2 ½ hour car ride from Kigali Last week I visited the school with Henriette, WE-ACTx FH Youth Director, who has been assisting Pretty and her mother. Pretty was happy and well integrated into the program; she has many friends. We watched her perform in the classroom and her daily regimen with the physical therapist.
school is well organized with about 50 students in each classroom. There is a chemistry and physics laboratory. The students eat together, live in dormitories and have a structured schedule that Pretty really enjoys. One of WE-ACTx’s good friends Christine Curci who has been in Rwanda for a couple of months each of the past few years will be returning and is bringing Pretty a lap top to help her with tests and papers as writing with her left hand is still very difficult. WE-ACTx FH will use a portion of the money raised last year from the generous donations you all made in honor of my 2 children’s weddings to pay the full 3 years of boarding school fees for Pretty.
As of mid January, we have completed half of the enrollment for the NIH-Funded Youth Adherence Study. Retention for the 6 month assessment is phenomenal (only 1 of the 159 youth enrolled did not come to the study visit, and since returning to the clinic, she has is scheduled for the twelve month assessment). The retention rate is 99.4%.
Here is the youth leader team enjoying their success.
Many of you have received (in the mail or in person) the “Mardge and Gordy 2014 Favorites” annual music mix CD which this year featured pictures, and even a few songs, from WE-ACTx and Rwanda (cover pictured below). If you didn’t, but wish to get a copy, please let us know your snail mail and we would be happy to send one as a thank-you and way of sharing our joy for being able to continue to do this work here in Rwanda.
Mardge
Women's Equity in Access to Care & Treatment