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
by Jessca Early, a nursing student, during her second time volunteering with WE-ACTx in Kigali
In late May—after a day spent napping off the jet lag from my trans-Atlantic, multiple layover, journey from Boston to Rwanda—I found myself sitting in a plastic lawn chair squeezed into a small medical exam room at the Women’s Equity in Access to Care and Treatment (WE-ACTx) clinic in Kigali.
It was my first day as a volunteer nurse at this community health initiative founded in 2004 by both foreign and domestic HIV/AIDS patients, activists, and physicians. Today, the organization provides medical and psychosocial care to HIV-infected men, women, and children. On this particular morning in the summer of 2013, I was the only foreign volunteer working at its Kigali facility, which serves over 1,800 patients. The clinic is staffed entirely by Rwandans working in interdisciplinary teams of medical and psychosocial workers.
These staff members welcomed me with a flurry of high fives, smiles, and kisses. Despite their warm reception, I was filled with apprehension when the exam room door closed behind me, heralding the arrival of my first patient. Although I would only be observing and assisting Jane, my middle-aged, white-coat-clad, fellow nurse, I was just a newly licensed RN, still operating in student-nurse learning mode. The idea that I might be making an independent contribution to a patient’s clinical care plan seemed far-fetched indeed.
During my clinical rotations in nursing school, I had only cared for one or two HIV-positive patients. So, in a frantic bid to alleviate feelings of anxiety and professional inadequacy, I had spent weeks prior to my trip reading medical journal articles, global health studies, and, admittedly, Wikipedia entries on the transmission, pathophysiology, clinical presentation, and treatment of HIV and AIDS. In a small notebook, I had scrawled “cheat sheets” of CD4 count-based treatment algorithms, common side effects of antiretrovirals (ARVs), and the signs and symptoms of an array of opportunistic infections. By immersing myself in as much HIV and AIDS-related research as possible, I naively hoped that I could compensate for my near total lack of practical experience working with HIV-infected patients.
When Jane’s first patient walked into the exam room, I kept my little notebook of factoids and protocols close at hand. Drawing on my mastery of about ten words in Kinyarwanda, I greeted this forty-something Rwandan woman dressed in a traditional wrap skirt and matching blouse. Jane asked the patient how she was doing and the two launched into an animated discussion in Kinyarwanda that I could not understand at all.
Instead, while awaiting Jane’s translation, I tried to put my skills of inspection (the first step in the physical assessment which had been drilled into my head in nursing school) to good use. I scanned the patient’s skin from head-to-toe searching for rashes, discolorations, hair loss, and evidence of dermatological infections. Watching the subtle rise and fall of the patient’s chest, I counted her respiratory rate and looked for any signs of labored breathing. After making a gross estimation of the patient’s height and weight, I calculated her body mass index as falling somewhere in the low end of the overweight range.
Finally, I observed the patient’s facial expressions, vocal intonations, and mannerisms as she chatted away with Jane. Opening up to a blank page of my notebook, I jotted down my initial clinical impression: “Middle-aged, overweight Rwandan female alert and oriented times three in no acute distress. Appropriate eye-contact, dress, and speech pattern with pleasant affect.” I silently reread my assessment a few times and found myself immediately perplexed:
The red, itchy patches of cutaneous Candidiasis that prey on immunocompromised skin? Negative.
Hollow cheeks and atrophied limbs from malnourishment or HIV-wasting syndrome? The woman sitting in front of me is pleasantly plump.
Signs and symptoms of cytomegalovirus (CMV), pneumocystis jirovecii pneumonia (PCP), or histoplasmosis?
Not present.
In short, where was the presentation of an HIV-positive patient living in a developing East African nation that all my pre-trip research had described?
Before even hearing her reason for coming in, I suspected I would not find a portrait of this patient among my research notes. When Jane translated the chief complaint as hot flashes and moodiness, my suspicion was confirmed. Working in a country with limited resources, immense population pressure, and a recent history of genocide and subsequent economic collapse, where I would surely encounter clinical presentations and illnesses rarely seen in the US, I formulated my first likely diagnosis: menopause.
Through a multimodal approach to care including individual and group psychosocial counseling, peer-to-peer patient education, nutrition assistance, income generation projects, and targeted support programs for children and young adults, WE-ACTx has spent the past decade tirelessly promoting patient adherence to therapeutic regimens and self-management of HIV. In its early years—when ARVs were just becoming available in Rwanda—much of WE-ACTx’s work was directed at facilitating access to HIV-treatment. Faced with a patient population experiencing rapid disease progression and resulting immune system failure and opportunistic infections, WE-ACTx’s priority was getting patients on life-saving drugs.
Today, the Rwandan government provides ARVs for free through a network of private and public clinics. Moreover, WE-ACTx’s provider-patient partnerships have markedly increased adherence to these drugs. As a result of these collaborations, the clinic can devote more energy and resources towards primary care, in addition to HIV-specific treatment. Patients receive care for and learn how to manage medical and psychosocial issues from hypertension and diabetes to depression and domestic or interpersonal conflicts. From an organization urgently providing ARVs at a time when patients were succumbing to the disease every day, WE-ACTx has evolved into a primary care provider that addresses the holistic needs of its patients and supports their efforts to improve their overall quality of life as people living with HIV—not dying of AIDS.
Which brings me back to my first patient encounter some ten weeks ago. I was looking at the new face of HIV care at WE-ACTx: a rotund, chatty, middle-aged Rwandan woman who was fatigued, not by an opportunistic infection ravaging her immunocompromised body, but rather by a night spent tossing and turning, sweating, and stripping off her clothes as an uncomfortable wave of heat spread over her torso and left her face flushed.
None of the ARVs I had so frantically researched would relieve this sensation or other menopausal symptoms suffered by this patient and numerous others I met who were experiencing “the change” during my visit to Rwanda. In their country, hormone replacement therapy—whose utility and safety remains controversial in the US—is available from just a handful of prohibitively expensive specialists in private practice. Jane and I could only offer reassurance that these hot flashes, while distressing and disruptive, were a classic sign of a natural, inevitable physical and emotional transition rather than a harbinger of disease.
We also encouraged our middle-aged patient to discuss her experience at her weekly WE-ACTx women’s support group meeting, a safe space for sharing medical, familial, and socioeconomic struggles and successes. At this session, her “treatment” would take the form of knowing smiles, nodding heads, words of commiseration, and copious amounts of laughter from fellow peri- or postmenopausal patients. Just a few years ago, this same group of patients had little hope of even reaching middle age and thus being able to experience this natural condition.
In my first encounter with menopause in Rwanda (and many other patient appointments to come), I would not deploy an arsenal of differential diagnoses or drug options. Instead, I would have the far more educational opportunity to participate in the type of interdisciplinary, patient-centered, holistic care—increasingly uncommon in the profit-driven US health system—that all patients deserve whether in a small, developing East African country or the wealthiest nation in the world.
Early, J. (in press). “The Change” in Rwanda. In Gordon, S., Feldman, D., & Leonard, M. (Eds.), Making the team: Case studies in cooperation and conflict in health care. Ithaca: Cornell University Press.
Women's Equity in Access to Care & Treatment