Dear friends
Last Sunday WE-ACTx celebrated 10 years in Rwanda with a giant anniversary party in Kigali. Over 400 children in pink and black T- shirts (silkscreened by Dutette, one of the income generation cooperatives of WE-ACTx For Hope patients) came with their parents to sing, dance, hear speeches and testimonials, and enjoy a buffet lunch and huge cake. Joined by WE-ACTx For Hope Board members, partners, and representatives of the government, staff and patients cheered our commitment to caring and respect for those with HIV and their families. It was a day of joy, though many in attendance were moved to tears as we heard stories of gratitude and adversities the patients had overcome.
I couldn’t imagine during that first trip to Kigali in April 2004 how many times I would return and how many wonderful people I would work with and get close to. But when I think about the first year, I’m not really surprised that we defied the odds and are still here, working collaboratively with so many to meet all the challenges.
Within days of arriving 10 years ago, I met Frank who helped develop the income generation program. Five months later when I came to staff the clinic for a month, I met Christine who now works in the pharmacy, Marcel who drives us, Seraphine who cooks at the house in Kyovu, Josee who takes care of young children in the clinic, and Naila who helps advocate for patients. That’s when Mary Fabri (who took the pictures in this email) came to help integrate mental health care into primary HIV care. By January 2005 I had met Felicite, now the WE-ACTx For Hope Board president, Henriette, the trauma counselor and Youth Program Director, Chantal, Director of WE-ACTx For Hope, and Irene, the trauma counselor. Chantal and Rose, 2 nurses in the clinic, joined soon after that. We knew we had to respond to the urgency of HIV in 2004 and 2005 and we have kept at it, facing new challenges but remaining committed to reaching the highest quality of life, and physical and mental health for our patients. Though we have grown considerably, more than 1/3 of the current staff worked together that first year of WE-ACTx to build the clinic services and meet the emergency of getting medications to the very sick.
At the celebration we gave certificates of appreciation to the many staff who have worked with us for 10 years and 5 years. Patients gave moving testimonials about how their lives have improved. And we applauded the 52 patients who first came looking for antiretroviral medications in 2004 and who are well and strong and still coming to the clinic 10 years later.
Here is a Rwandan article on the event with some other pictures http://www.igihe.com/ubuzma/indwara/article/umuryango-we-actx-for-hope-umaze
It was a day of many smiles as children of all ages performed traditional dance, hip hop, played guitar and drums, and sang. With help from talented older youth and Musicians Without Borders’ Chris Nicholsen (the music therapist from England), the children’s groups wowed us all. Their discipline in preparing their performances, and their exuberance to participate with their friends and families warmed everyone’s heart. Seeing so many healthy children and families reminds us how far we have come with access to antiretroviral therapy (ART), disclosure discussions with children and their mothers, youth support groups, improving adherence and giving hope.
Of the ~2000 WE-ACTx patients on ART, 81% have undetectable virus, which means the medication regimen has been successful in suppressing their virus and in preventing transmission. In July, the Rwandan government protocol will be revised to begin antiretroviral therapy earlier in HIV infected persons (at a CD4 count of 500, instead of current 350 level). That will mean 120 additional WE-ACTx For Hope patients will be starting ART in the next 6 months.
As in Chicago, and other settings some patients find it very hard to take their medications regularly and get very sick. We have utilized Direct Observational Therapy (D.O.T.) for several young patients. They come daily to the clinic and take their medication from the nurse who also gives them a small snack. This week I saw again one of WE-ACTx For Hope’s amazing success stories: a 20 year old orphan living with his brother, who was very sick with malnutrition and TB and advanced HIV. He was nurtured back to health with medications and a hot meal brought daily by one of the staff and has now gained over 40 pounds and will return to school. We just enrolled another patient, a 20 year old mother of an 18 month old who is depressed who finds it very difficult to take her medication regularly and is very immunocompromised. I hope we have success here as well. Although D.O.T. is labor intensive for the patient and our staff, and expensive in terms of transport it has worked for young patients who we don’t want to give up on.
On a sadder note, we still have not found a school for Pretty, who I wrote about several months ago. She is 16 and unable to talk since a stroke from HIV vasculitis 18 months ago. Services for disabled persons are rare and not adequate in Kigali. We are reaching out to Handicap International, and advocates who have created alternatives here for their own children and others. I hope to be able to report some progress on this soon.
WE-ACTx continues to attract interns. This summer, two interns are working on improving the income generation programs. Always challenging to find markets, to keep hope when orders are fewer and to develop better accounting literacy, it’s nice to have Brian from Chicago and Allison from Boston helping the groups out. Summer camp will again generously be supported by The Latin School in Chicago during the end of July and beginning of August, and a group of Latin students will join the peer parents in running the camps at Nyacyonga (rural clinic area) and downtown.
Our NIH-funded study to improve adherence more generally in youth 14-21 is going very well. The youth leaders, trained by Mary Fabri, are currently delivering the 6-session intervention (psychoeducation, relaxation, and trauma informed cognitive behavioral therapy) to the second group of participants. The groups run smoothly and everyone participates enthusiastically. Attendance at the intervention sessions is very high for the youth and for their caregivers/parents. The Rwandan research psychologists who supervise the program are superb. Here’s a picture of the team with Josette, one of the psychologists.
Today’s world is a difficult one, with so many conflicts in every part of the globe. But we have a special healing space in Rwanda, one of the sites of terrible past conflict, giving hope in a worrisome world. At WE-ACTx For Hope people from different parts of the world are working together and building a better model. A local model where people matter, where we try new things and try to do the best we can to overcome past trauma and lifelong infections. We thank our patients who have stood by us and continue to inspire us, and the staff who have worked so hard and continue to be committed to high quality service. And we thank you, our supporters for being there for all of us.
This year has seen an exciting fundraising development. Three young couples have suggested to their friends and families to donate to WE-ACTx in honor of their marriages. (Full Disclosure: 2 of the couples are part of my family, and one is part of Linda Mellis’s family, the Chicago WE-ACTx Coordinator.) To Davida and Sim, Daniel and April, and Eugene and Hima: many many thanks for spreading your love to WE-ACTx and Rwanda.
Thanks for your support,
Mardge
Women's Equity in Access to Care & Treatment