In Rwanda, children learn to live with HIV

They look like any group of kids anywhere. And that is the point.

(Emily Bancroft photo)
At a soccer field in Kigali, Sunday is the day for children living with HIV/AIDS to get together to have fun, learn, and relax.

Emily Bancroft, a resident of Cambridge, is the Leland Policy Fellow for the Health Action AIDS Africa Program at the Cambridge-based Physicians for Human Rights. She is currently in Kigali, Rwanda, where she and other doctors are working with children, teens, and young adults who have HIV/AIDS.

By Emily Bancroft

Feb. 9, 2009

KIGALI, Rwanda -- On the edges of a dusty soccer field that looks across the green hills of the capital city of Kigali in Rwanda, more than 200 children and teenagers laugh and play. Some of the younger kids form a circle and sing, while the middle ones play tag. The oldest sit on the steps talking seriously. After an hour, the kids gather for milk, bread, and bananas.

They look like any group of kids in any neighborhood in the world. You would never know that all of them are living with HIV/AIDS. You would never know that they came from over all over the city in order to be together on a Sunday.

Sunday is their day to relax with their peers, to escape from the seriousness of their lives, and to be open and free about their HIV status -- something most, if not all of them, cannot do at school. For the older kids, this is their day to talk with their counselors and peer advocates, and to troubleshoot challenges that came up either at school, with their families, or with their treatment. They learn about staying safe, having healthy relationships, and staying in school. And, it’s a chance to eat -- something many of them struggle to do even once a day.

I am in Kigali for my work with Physicians for Human Rights (PHR), and I came to the soccer field to observe the work of Dr. Mardge Cohen, a longtime PHR supporter who works in Boston and Chicago.

Six years ago, a group of Rwandan women who are survivors of genocide put out an SOS on an international health email list asking for help accessing HIV treatment. Mardge and other doctors and activists responded by forming Women’s Equity in Access to Care and Treatment in 2004. Also known as WE-ACTx, this organization supports more than 3,000 women and children on HIV treatment. It also provides social support, mental health services, family support, school fees, and legal services to thousands more.

The Sunday support group is one of many ways that Mardge and the rest of the WE-ACTx team provide integrated and holistic services for families affected by HIV in the Kigali area.

HIV treatment has improved drastically since 2004. Today, the Rwandan government reports that over 60 percent of those needing antiretroviral medications (ARVs) are on them. This is higher than most of the rest of sub-Sahara Africa, where average uptake of ARVs is reported at only 25 percent due to a myriad of factors including poor political will, stigma, discrimination, poverty, lack of available clinics and drugs, and gender-based violence.

The additional support that WE-ACTx provides beyond medical treatment -- legal counseling and advocacy, mental health counseling, school fees, economic development opportunities for women, and nutrition and food support -- remains desperately needed in Rwanda.

(Emily Bancroft photo)
Dr. Mardge Cohen, a founder of WE-ACTx, with Bertin Mulinda Shambo, a youth coordinator for the group.

“One of the boys in our Family Program is about to start a secondary boarding school with funds through a WE-ACTx program,” Mardge tells me as a stream of kids run by us on their way to lunch. “He told us he didn’t know how to bring and take his ARVs and still keep his HIV infection hidden from others. When WE-ACTx began the Family Program, few children were on ARVs, and fewer still were in high school. Now, children are doing so well on their medications, we need to help them address new issues around confidentiality, stigma, and discrimination.”

After lunch, the kids get a big surprise when a local (and clearly beloved) musician shows up to visit them. As the kids laugh, cheer, clap, and sing along with him, Mardge smiles. Sometimes, despite all the challenges and all the sadness, the simple things do matter.

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