Kigali, January 2014
Dear friends
2014 is the 20th anniversary of the genocide in Rwanda and preparations are underway here for this difficult period. The genocide memorial torch was lit in early January and will be carried countrywide concluding on April 7, the beginning of the 100-day national mourning period. Many activities are planned for learning, commemoration, and rebuilding. Kwibuka is the Kinyarwanda word for “remember” and the title of the 2014 commemoration of the 1994 “Genocide against the Tutsi.” There are conflicting views on how the commemoration period affects Rwandans –whether the memorials contribute to healing or the long memorial period reignites traumatic memories. And whether the memorials increase divisions and suspicions or promote unification. This year things seem noticeably tense, with more armed soldiers patrolling the streets, probably because of the recent murder in South Africa of an exiled former colleague but now enemy of President Kagame.
For me, this Kigali visit is especially exciting because my husband Gordy is here for 10 days, and my son Eugene and his partner Hima (family medicine residents at Montefiore Hospital in the Bronx) are working at the public Central University Hospital of Kigali (CHUK) for the month. They are seeing up close the growth of medical post-graduate and specialty training via the 7 year Rwandan Human Resources for Health Program, a partnership with many U.S. hospital and medical institutions to address the critical shortage of skilled health workers, poor quality of health worker education, inadequate equipment and management of health facilities.
In some ways medicine is practiced the same in hospitals all over the world: early morning rounds; students, residents, and attendings making sense out of patients’ presenting symptoms; a stream of patients being admitted and discharged. But of course things are especially difficult in Rwanda’s public referral hospital. Eugene and Hima have seen patients who can’t afford antibiotics and have to wait too long for treatment –patients/families have to come up with the copays before a test is done or drug administered–; for others who can’t afford needed scans, diagnoses remain uncertain. Interventions are delayed and there are deaths that would be preventable in the U.S. There is a nihilistic approach on the part of some young Rwandan doctors from years of these experiences. Gordy is giving presentations on patient safety and diagnostic errors in this context. He finds it particularly challenging and exciting to try to figure out how to make quality improvement principles relevant to their experience and context. Thus the whole family is grateful to be learning and contributing.
Eugene and Hima’s visit to the WE-ACTx clinic and fresh-eyes observations prompted another look at our evaluation of adherence. As a result, we have created a plan to screen annually for adherence to antiretroviral medications during the first months of the year. Using a simple 3 question validated self-report tool, the nurses and doctor at the clinic already noticed that they are identifying patients who they thought were doing well but actually need more education and support to adhere well to their medications.
We have also begun more aggressive direct observation therapy for those youngsters who are not adhering well to their regimens, and have had some success. The program includes extra counseling and a meal when they come to take their medications.
Here, one of the peer advocates is pictured with a 19 year old who comes daily. He had been very sick and depressed. He was started on treatment for TB and has improved in terms of his physical well-being and his spirit to live. We will also start sending our patients who are trained as community health workers to visit those patients who have missed their appointments or need more encouragement to take their antiretroviral therapy.
And after a year of preparatory work, the research program to improve adherence in youth 14-21 through a youth led 6-week CBT group intervention has started. Recruitment at both the CHUK and WE-ACTx support group site went well. The research staff are motivated and the youth are excited to participate. Mary Fabri will train the youth leaders during February and the intervention for the first group will be completed before April, when the genocide commemoration will require everyone’s full attention.
Though we work to maximize the benefits of current treatments here, we worry that Rwandans, and many others in subSaharan Africa are falling
behind in accessing the best antiretroviral therapy because of the expense and unavailability of newer and more effective medications. U.S. guidelines for initiating antiretroviral therapy now include newer protease inhibitors and integrase inhibitors and combinations that remain unavailable to HIV infected patients here in Rwanda. These drugs are considered “third line therapy” here in Rwanda and byWorld Health Organization guidelines, yet are rarely used anywhere in Africa because of high costs. We have to continue to pressure PHARMA to reduce costs and license these life saving drugs for all those who need them.
Our varied support groups continue to meet weekly to address psychosocial issues for about 500 of the 2400 patients in WE-ACTx’s 2 clinics. A 6-month literacy program started this past week for 11 members of the young mother’s group. Hopefully we will be able to expand the literacy program to other patients in the future.
With skills training from Musicians Without Borders, the peer parents have added music activities to what they teach during both children’s Sunday groups. For the older youth, many come an hour earlier to play drums, guitar and keyboards, as well as sing and dance.
Here is the first jam session with everyone coming together: guitars, drums, singing and dancers. Chris Nicholsen, a music therapist from England who has been working with Musicians without Borders and WE-ACTx for the past 2 years brings the instruments each Sunday for these activities.
Chris also has weekly music therapy sessions with a patient we are particularly concerned about. P. just turned 16 and was perinatally infected with HIV. About 18 months ago, while at boarding school, she stopped taking her HIV medications and experienced a stroke thought to be due to HIV vasculitis. After a hospitalization and some rehab, she is unable to speak and has little strength or fine motor coordination in her right hand. This has been devastating for her and her mother. Previously she was doing very well in school and spoke fluent English. Now she is unable to go to school as she has difficulty caring for herself and because there are no dedicated schools for students with disabilities in Kigali. We have set her up with an IPAD mini to increase communication and play and enjoy music.
Here, Chris is teaching her how to electronically play guitar chords for a song. We hope that Christine, a volunteer social worker who worked with P. last year and is back in Kigali for the next 3 months, will be able to identify options for her to attend some sort of school program.
This April marks not only the 20th anniversary of the genocide, but 10 years since WE-ACTx began working in Kigali. As I reflect on the stories Eugene and Hima bring back from the hospital each day—of both what the staff is able to do and not do; of how much passion remains and how much there is a need to avoid being resigned to the seemingly ingrained disparities—I am proud of what we have been able to accomplish with WE-ACTx. Not only the actual day to day, and 10 year list of accomplishments, but that fact that we offered, and continue to deliver “hope.” It had been 7 years since Gordy was last here and he was struck by the relationships (in many cases continuing since then) that have been built with the staff, the continuing packed waiting room in our downtown clinic, and the diversity of our programs (he is even going to take a guitar lesson from Chris).
So as we celebrate this anniversary we are aware of how much we have learned and contributed and how much still has to be done. We thank all of you for all your continued support.
Mardge
Women's Equity in Access to Care & Treatment