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