February 4, 2017
Like many of you, I joined in the Women’s March on January 21. The next day, I left Washington DC for Kigali. It has been difficult to keep up with each terrible assault/insult and the powerful resistance, but it’s almost impossible not to think about it all the time. Our Rwandan friends ask what happened to the United States? Some are surprised there can be such vocal opposition to a President. Others say they realize how much this affects them, and the whole world, and are terrified.
At WE-ACTx for Hope, the clinic continues to successfully serve 2000 patients and their families. Since January 1, the staff has been implementing the 3 month care visit for those with viral suppression. Previously the Rwandan national protocol required monthly clinic visits and medication refills. Now, about 2/3 of all adult WE-ACTx For Hope patients (plans for children and youth are underway) who meet the viral suppression criteria will attend clinic visits and receive antiretroviral medications every 3 months. Patients participate in a group educational meeting as well as individual sessions with counselors to learn about the new program and reinforce adherence for this longer duration between appointments. These extra sessions during clinic hours make the clinic day very busy, but by April, the number of patients attending clinic each day will be reduced, allowing us to spend more time with those who have not achieved viral suppression and need more attention. Our team of nurses, physician, lab technicians, receptionists and data managers are excited to meet this new challenge (as well as the progress it represents). Patients share that they are thrilled- they feel like they succeeded and graduated to a new level of care. One patient did ask if this meant they would only have to take one special pill every 3 months. If only!
WE-ACTx for Hope just received additional funding from AIDS Health Care Foundation. This supports a renewed prevention effort to enroll 20 new patients each month. A team goes out from the clinic to high seroprevalence areas in Kigali to educate, counsel and provide HIV rapid testing. In addition, a new effort to reach and provide counseling and testing for sex workers is underway at the clinic. A survey of 65 sex workers attending the clinic showed that these patients had the same rate of viral suppression as the rest of the clinic population. Those sex workers who are not virally suppressed will now meet regularly to support each other to improve adherence and follow safer sex guidelines. We will encourage these women to bring in other friends and coworkers for testing as this is a high risk group in Kigali. In addition, parents in the clinic who have uninfected children over 16 have asked staff to help them discuss safer sex and HIV prevention with these children. The counselors will be setting up youth-oriented workshops to provide this education and then offer counseling and testing for HIV. Implementing these new prevention efforts will help contribute to the national plan to prevent HIV transmission and allow WE-ACTx for Hope continue its leadership role in HIV prevention and care for women and children.
The S support groups have been reorganized to reflect the changing numbers and need of younger patients with HIV as well as available resources. Transportation costs have greatly increased in the city. This year, we will reduce group support sessions from 3 to 2 sessions (the first and third Sundays of each month) in order to have sufficient transport money for all children to attend. Quarterly parent group meetings will continue. In the morning, 100 older youth, aged 16-18, meet at St Famille school and have music, dance, yoga and group discussions with peer parents. Concentrating on this older group will allow peer parents to discuss gender role, HIV, school, and family issues.
They will also be able to learn about and discuss the logistics of new 3 month appointment schedule which will begin for children and youth later this year. About 100 WE-ACTx for Hope children between 7 and 15 years come to the afternoon group, held at Qadaffi Mosque for the past xx years. Those under 13 have yoga, drumming, traditional dance, modern dance, games, and soccer. The 13-15 year olds have more grown up discussions about health, school, and family. More peer parents will lead groups for the younger ones, so that more age appropriate attention will be provided. The peer parents lead the activities and their energy and enthusiasm carries the day.
Our yoga teacher is named Joseph. He began as a patient in WE-ACTx 12 years ago when he was 18 years old. In 2010, he completed secondary school and became interested in the yoga program. He sought more training and Deidre Summerbell, who runs Project Air helped him develop the discipline and provided the training for him to reach teacher status. Generous donors from Chicago supported these efforts over several years. Joseph’s physical appearance, demeanor, and approach to life are so beautiful, well-balanced, and mature that he inspires and models health for all of us.
Today Joseph is earning a living for himself and his family. He teaches 3 yoga groups for non-Rwandan residents in different Kigali neighborhoods, and to both children support groups. He is optimistic that he will continue to be healthy and have rewarding work. This is one of WE-ACTx’s many success stories – and most importantly so many contributed to help make this happen.
This trip was filled with several success stories of young people completing university studies, attaining jobs, and getting married. I hope to share these details with you in future letters, as your support has been so crucial.
Mardge Cohen MD
PI, Women Interagency HIV Study (WIHS)
Medical Director, Women’s Equity in Access to Care and Treatment (WE-ACTx)
Boston Health Care for the Homeless Program