Letter from Kigali July 2016

July 30, 2016


I am once again privileged and moved to offer you summer greetings  from Kigali.    WE-ACTx has now been working here for 13 years, with the work officially led by our local partner WE-ACTx For Hope (WFH) for the past 7.


To get a good feel for our program view this PBS Newshour segment on how Rwanda has responded to the HIV epidemic entitled:


How Rwanda, once torn by genocide, became a global anti-AIDS leader


Our colleague Dr. Sabin, head of the Rwandan Biomedical Center (RBC), told us that when he was approached by PBS to highlight challenges and successes in HIV care in Rwanda, he immediately thought of a rural perinatal reduction campaign and the youth work of WE-ACTx.  In less than 10 minutes you can be transported here to get the flavor of the faces, the successes, the future challenges, and most importantly the special young people working on the epidemic here. Although WE-ACTx is not mentioned by name in the video, you can see several of our programs, especially addressing challenges such as youth adherence and even see the library with giraffes on the wall painted years back by our artist friends and visitors from Chicago.


Services that engage youth in meaningful and friendly ways continue to be a centerpiece of our program.  Below a Musicians without Borders trained peer parent leads a drumming session with children who have come for their clinic appointments.  The beat travels from the downstairs music room throughout the morning on Wednesday children’s clinic day, pleasing many more than those drumming.  I get introduced to new types of music, inspiring ideas for the annual “Gordy and Mardge” music CD mix we love sharing with many of you each year.


We-ACTX July Kigali Letter Image 1


Summer camp has been a WE-ACTx tradition since 2009, when 3 Boston young advocates (Gia, Chloe and Dan) raised funds from friends and families to start the project.  Rwandan youth coordinators now prepare and lead the entire process. For the past 7 years, Chicago’s Latin High School, under Ingrid Dorer Fitzpatrick’s creative and persistent leadership has provided major support the camp both financially and through volunteers.  Each summer, 4-8 Latin high school students travel to Kigali and join Rwandan peer parents as co-counselors for a 2-week day camp experience for our young patients, aged 11-14.


We-ACTX July Kigali Letter Image 2


The campers play, dance, draw, sing, do yoga exercises, have a large lunch and thoroughly  enjoy themselves.  They prepare a closing ceremony with performances for the families of the campers.  All smiles and happy times for everyone.  And the bonding among the Rwandan and U.S. counselors is a special highlight; the relationships continue with Facebook and texting after the students return home.   Many of the Latin students have returned for a second trip, solidifying the bonds even more and proving that “being there” is really what matters.  This inspiring collaboration has been so important for the youngsters served by WE-ACTx, and the growth of the counselors from both countries.


Our NIH funded research, the Kigali Imbereheza Project (KIP), devoted to improving adherence in youth with HIV aged 14-21 has completed all 9 “waves” of intervention.  This remarkably successful project will now move into the final phases of collecting assessments from the participants over the next year and begin to formally analyze  the results of this randomized controlled trial that we are conducting in collaboration with Hektoen, the University of Illinois, and the Rwandan Biomedical Center.  One reason the study has gone so well has been the hard work and amazing leadership of the KIP study project director Charles Ingabire.  So you can imagine how special it was that we were able to attend his wedding during this visit.  Pictured here is Charles, along with Peace Corp Volunteer Cari, Mary, me, Geri, and Josette from the KIP project in traditional Rwandan dresses at the wedding.


We-ACTX July Kigali Letter Image 3


Summer interns (Rush medical student Stephanie Ross and college student Lizzy Hilt) worked on helping us better understand ways stigma affects youth in our clinic, especially those in boarding schools.  In order to protect their confidentiality youngsters attending public boarding schools (about 25% of Rwandan students) have to hide their antiretroviral medications and often skip doses or stop taking their pills.  This may in part explain the lower rates of viral suppression among these younger patients (only 70% among those aged 13-24 compared to 84% for the entire clinic population).  While we are hopeful that we will see improvement through our KIP study, we realize that broader advocacy efforts, including working with the Ministries of Health, Youth and Education will be needed to meet this country wide challenge.


I was personally saddened to learn that one of our dear patients who has been with WE-ACTx since the beginning and is also now a close friend, was diagnosed with cervical cancer.  She had sought care herself in Uganda and received some radiation, but has now learned from a CT scan in Kigali that the cancer has spread.  She needs additional palliative radiation.  Patients in Rwanda are sent to Uganda for this; but the machine in Uganda is currently broken.  Expected to be fixed in a month or so, Rwandan doctors will then send 2-3 persons a month with cervical cancer to the Ugandan program.  Sadly, there are more than 200 women on the waiting list for radiation in Rwanda. Where you are born and live still determines how you will fare with this cancer, the major cause of death from cancer among women in Africa.  Even with the potential of vaccines, early screening and treatment, many women here are still left behind, many with treatable complications.  We are hoping to raise the funds to help fast track the needed radiation for this special patient.  Cervical cancer was already one of WE-ACTx’s priority areas. We screen many women in WE-ACTx for cervical cancer and hope we and others in Rwanda can have a more positive  impact on this important public health concern.


On a brighter note related to public health challenges, the Rwandan Biomedical Center under Dr. Sabin and others, has negotiated with donors and several drug companies to provide treatment of Hepatitis C at a cost of $800/patient, far below U.S. costs.  Government supported treatment will be available to those diagnosed with Hepatitis C at public and private clinics. Hepatitis C rates in Rwanda are not known, but is estimated at about 4%. Globally, people with hepatitis C and their allies from have protested the outrageous price of lifesaving HCV medicines and the greed of the industry.  They are pushing for generic competition to bring down the price of HCV treatment and ensure universal access. While walking to the clinic one morning this week, I saw this queue.  By the end of that one day, 2600 people had been tested for Hepatitis B and C and had received their first Hepatitis B vaccine!


We-ACTX July Kigali Letter Image 4


Looking back over the past decade of work with WE-ACTx, I am still without words to fully describe all the successes, challenges and failures of an under-resourced health care system and what a difference a well run clinic committed to comprehensive, integrated medical and psychosocial care for women, men and children with HIV has made.  Small victories, sad losses, continued hard work and a long road ahead.  Thank you for your continued support as always for the staff and patients here.






Women's Equity in Access to Care & Treatment