Dear all: This trip, my daughter, Davida, was in Kigali for the first time, on a fourth year medical school elective. Too exciting! Here’s the report through her eyes:
For the past several years I – and I imagine many of you—have come to expect my mom’s periodic “Kigali report.” It’s hard to believe that I am now in Rwanda, for the first time meeting the people in the pictures and putting faces to the stories we have read, beginning to understand the triumphs and continued challenges of caring for women and children with HIV at WE-ACTx. It feels incredibly special to be here with her this month and to share some of my experiences and reflections with you.
Putting faces to the stories
The week before I joined my mom here, there was a meeting of HIV+ youth on second-line antiretroviral therapy. This regimen has more pills and more side effects than the simpler first line regimen. The young adults discussed the challenges of accepting second-line therapy and the obstacles to taking their medications each day. They brainstormed ways to conceal pills in envelopes and find private spaces to take their morning medications at school. They highlighted the need to be able to contact a health care provider outside of school hours to reduce stigma from repeatedly missing class. The group plans to continue meeting together to think of solutions to their shared struggles, starting with designing an alternative pill box that won’t rattle in their bags disclosing their disease.
The WE-ACTx house is full and everyone is busy working on a variety of exciting projects at all hours. Late into the evening, Mary Fabri and Mardge have been furiously grant writing, submitting abstracts, and writing letters for scholarships for WE-ACTx staff to attend the International AIDS conference being held in Washington DC this July. One large grant proposal is aimed at improving adherence among youth in Rwanda by addressing gender-based violence and depression using a trauma-informed cognitive-behavior (CBT) intervention. Cori, a social work student from Chicago has been working with Mary to further develop the CBT program. Noam (Israeli Brandeis graduate who has a fellowship supporting her stay in Rwanda this year) has been busy preparing for a week-long music training with Musicians without Borders (more below). Emily, a Peace Corps volunteer, is in her final few months of service, partnering with Henriette to coordinate the youth program. She is collaborating with a new Peace Corps volunteer (Kim Baskin from Chicago) who is working near the Nyacyonga WE-ACTx clinic site to help grow the income generation project there.
I’m told that Kigali has changed drastically since 2004 when my mom made her first trip. Perhaps the only constant is the birds chirping outside starting around 5:45, more reliable than any alarm clock. Today the city is abuzz with construction projects everywhere—roads are being paved and sidewalks laid, several tall skyscrapers now stick out from the city center, and dozens of new shiny glass hotels are being built. A European coffee chain has opened up multiple shops. But the current frenzy of development also highlights the contradictions of who has access to these resources. Just a few steps away from the main road and in the neighborhoods outside the downtown where WE-ACTx patients live, there is still a maze of rocky dirt roads without electricity that leads to tightly packed single room homes where malnutrition remains the biggest barrier to adhering to ART medications.
A block away from a five-star hotel where foreigners lounge beside a landscaped pool is the public teaching hospital in Kigali, CHUK, where I have been spending time in the pediatric ward. The ward is a connected block of 8 different rooms, with 12 beds in each room. Mothers and children and often siblings share a bed, with your neighbor about an arms distance away. The first week I was in the “oxygen” room, filled mainly with infants born with congenital anomalies, which if diagnosed prenatally on ultrasound in the U.S., would be surgically corrected within the first few days of life. These patients were weeks to months old, receiving oxygen as their only therapy, as they waited for a surgeon from the private hospital to consult on their cases. It’s extremely difficult to stomach the huge gap in access to resources and treatment here— from the one available blood pressure cuff, too large for every malnourished child in the ward, to poor access to timely life-saving surgeries.
How to best utilize limited resources is a constant discussion, whether at CHUK or at the WE-ACTx clinic, where staff may have to take a 20% pay cut to help keep the daily operations afloat due to the loss of a significant source of funding earlier this year. The cuts are needed to maintain the clinical and psychosocial support services for the program’s 2,500 patients.
Dossa, a 23-year old who translated for me at the weekly support session
One of the important programs is training peer-parents, HIV-infected youth who are selected to facilitate support groups and serve as role models for the younger children. On Sunday I met Dossa, a 23-year old who translated for me (English is one of eight languages he speaks) at the weekly support session. He told me: “I love Dr. Mardge more than I love my family. When I found out I was infected my family wanted nothing to do with me and I thought my life had ended, but through WE-ACTx the pain has disappeared and I can feel proud. I am a peer-parent to help those the way WE-ACTx helped me.”
This week, Dossa and the other peer-parents are participating in a music leadership workshop led by Joey Blake from Boston and Otto de Jong from Holland, both with Musicians without Borders. For four hours each day, after a busy day at work or school, WE-ACTx youth leaders dance, sing, and learn exercises that they will take back to their support sessions with the younger children. I’m amazed how quickly they picked up the lyrics of the American folk songs while I’m still struggling with the proper pronunciation of the five Kinyarwandan words I know. Joey and Otto have met with Rwandan musicians and even the Ambassador from Holland to develop an ongoing partnership to continue this work.
Felicite, her daughter and new grandson
There are so many things to be hopeful about particularly while watching the creativity of the peer-parents through song and dance. Last week, we visited my mom’s friend, Felicite, who previously coordinated the research efforts at WE-ACTx, and met her daughter and new grandson. Shown here, are five generations, an inspiring picture of continuity and pride. I am moved thinking about my mother’s commitment to continuing this work, and about how families and friends are so important to making a difference. Thank you all for making it possible for my mother to show off this amazing program and country this month, and for your continued support.
Women's Equity in Access to Care & Treatment