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Dignifying life: care delivery in an oncology ward in rural Rwanda
I can still hear his cry echoing through the entire ward.
“Clarisse, when was the last time we gave him morphine?” I pressed the nurse. “Less than 30 minutes ago,” she replied. “Give him another dose anyway.” Jean Paul was 11 years old and had a facial cancer compressing the entirety of the right side of his face as well as part of the left. His right eye was pushed outwards to the point of being dislodged out of his eye socket and no longer functional. His throat was squeezed such that he could barely swallow or speak. Worse of all however, was the excruciating physical pain inflicted by the tumor. The mass was compressing thousands of neurons triggering constant pain. He was a bedbound child with little reason to laugh or smile, not that he could with his face engulfed by the mass. The mere thought of him would immediately trigger a scarring visual, auditory, and emotional recollection. And if I had a moment to clear my mind while gazing across the beautiful landscape of Butaro, then he quickly reminded me of his reality as I could hear that agonizing scream even from outside the hospital walls.
“This would never have happened in the US.” That was my initial thought when I first met Jean Paul. He was Rwandan, and I was working at Butaro District Hospital in rural Rwanda. The Rwandan Ministry of Health had constructed a state of the art hospital in the rural highlands of northern Rwanda through a collaboration with the non-profit organization, Partners In Health (PIH). The stunning architecture is only surpassed by the natural beauty of the surrounding landscape. The breathtaking views epitomized the country’s reputation as the “land of a thousand hills.” Every morning at the hospital, I could breathe in the brisk cool air and appreciate the rolling green hills with a glistening lake in the distance, just bordering Uganda. Unfortunately, the majestic natural environment was a stark contrast to the realities of the challenges faced in the oncology ward.
Butaro District Hospital opened the country’s first dedicated cancer ward to become the national referral center for oncology care. Before the Butaro cancer ward, limited chemotherapy medications were available in-country and were too expensive for most. The fortunate few who received government sponsorship would travel outside the country to receive life-saving treatment. Thus, Butaro Hospital was a true game changer. Now, cancer patients could receive life-saving chemotherapy at no cost, and PIH also fully subsidized referrals for diagnostic and staging studies, surgery, and radiotherapy. After registering over 500 patients into the cancer program in its first six months in 2012, word quickly spread to patients who previously had no accessible treatment options, and this number more than tripled in 2013. The oncology program today has registered over 4,000 patients. I joined the Butaro Hospital staff in the midst of this massive influx in 2013, and could immediately see that we had been caught off-guard. The 24-bed oncology ward became a crammed, loud 40-bed ward and it was not uncommon to have two patients per bed. With limited staff, rounding on all the patients could take the entire day with the last patients receiving their chemotherapy courtesy of the night-shift nurses. The clinics would run well-past sunset with many patients having to be seen the following day. During the rainy season, the heavy downpour would pound against the tin roof in the congested ward with people crying for help making it nearly impossible to hear oneself talk nonetheless think. However, beyond the high patient volume, the biggest obstacle was the late stage presentation of patients. This factor was completely unlike my exposure to oncology in the US, and explains much of the gap which determines if the patient can be cured or just palliated.
In the US, the medical culture of routine well-child visits, annual check-ups, public health awareness campaigns, in addition to advanced diagnostic technology allow for early detection of a myriad of diseases. For cancer, the disease stage reflects how advanced or spread the cancer cells are throughout the body. As the stage progresses, the chances of successful curative treatment diminish. Unfortunately, low and middle income countries (LMICs), where cancer kills approximately 12 million people annually, consistently have higher stages at initial presentation. For example, in the US an estimated 13% of breast cancer patients present at an advanced stage. However, at Butaro Hospital, that figure is over 60%. Globally, LMICs have a 75% mortality rate among cancer patients in comparison to 46% in high income countries. This reality means that most patients at Butaro Hospital will not qualify to start curative therapy and will be immediately started on palliative treatment. In cases of hematologic cancers or “blood cancers” such as leukemia, late stage presentation could mean low blood counts so severe that any chemotherapy treatment would likely kill the patient. Too often we had to decide between treating the patient with a potentially lifesaving drug versus focusing on comfort care only due to the toxicity which that same drug imposed. I became accustomed to telling parents shortly after their arrival to the hospital that there was nothing for us to do for their child, but that we would make him or her as comfortable as possible. After arriving to the hospital with such hope, in less than 12 hours the parents were with our social workers arranging payments for transportation of the deceased.
Late stage presentation in LMICs cannot be simplified to mere patient ignorance or “poor choice.” The cost of clinic fees or transportation alone may preclude an individual from seeking care. Furthermore, why would someone take time away from work to pay for a bus and clinic consultation fees if he or she cannot afford the tests or medications? Thus for cancer, it is not uncommon for patients to wait until the pain or unsightliness of the tumor becomes so severe that they give in to the financial burden and present to clinic out of desperation. I recall one day when I was working in the oncology clinic, two consecutive patients presented with large, necrotic, malodorous facial masses. I asked each of them how long they had had the mass. Both replied, “10 years.”
Upon seeing Jean Paul, I feared the same story of late stage presentation with the same painful outcome. We performed a biopsy and waited for the result. Due to limited services in Rwanda, the pathology department of Brigham & Women’s Hospital (BWH) in Boston generously supports our work by providing remote services via telepathology. However, telepathology services were not yet available in 2013, so at that time we would ship all of our specimens to Boston for review. This process would typically take up to 6 weeks. Sending the patient home to wait was not an option given his severe pain and lack of appropriate oral pain medications. His only relief was intravenous morphine. During his first few weeks of the waiting period, his mother would hold a bottle of soda for him to sip on through a straw. Food was too bulky and painful to swallow. However, as we waited for the pathology result, I noted that each day even the swallowing of liquids became more and more painful. With no oncologists at Butaro Hospital, we significantly rely on the technical expertise provided by Dana-Farber Cancer Institute (DFCI) in Boston. DFCI and other partnerships such as that of BWH have been absolutely critical to the Butaro cancer program from the start with not only technical expertise and clinical service, but also staffing, educational, research and financial provisions. As such, we repeatedly discussed by phone and email with oncologists at DFCI our potential treatment options without having a diagnosis. After receiving preliminary results that the mass was a cancer but which was not yet fully determined, we ultimately decided to provide a trial of a chemotherapeutic drug that could potentially provide relief for some of the cancers which we suspected could be most likely. In the US, cancer treatment is typically not treated until a clear diagnosis is available. However, we made this decision, because the alternative of doing nothing and watching him die in pain was not acceptable. He deserved a chance to fight.
A new chapter of my visual, auditory, and emotional recollection of Jean Paul emerged. First, I noticed that he stopped asking for morphine as frequently. Then the mass began visibly shrinking. Next, he could eat; then, sit up; and finally, stand. After living in the cancer ward for over 2 months, for the first time he could walk outside on his own and put his feet in the grass and feel the brisk air against his face. The most memorable moment was his smile. Despite the mass encompassing the majority of his face, I could finally see that corner of the left side of his mouth curl up. Each morning that I rounded on him, he would smile and give me a high-five. On some nights, my colleagues and I would return to the ward just to play soccer with him simply because it was now possible. His cries of pain were completely replaced by laughter. He quickly became the ward’s symbol of hope amidst long days of emotionally tasking work. Jean Paul could now do what he was supposed to do: laugh, smile and be a kid. The pathologic diagnosis was still not clear, but at least we had bought him some time to continue our investigations.
Access to essential medicines in low-income countries is a critical challenge. The World Health Organization (WHO) Essential Medicines List (EML) comprises the bare minimum pharmaceutical needs for a basic healthcare system. It serves as a launching point of recognition and advocacy for accessing these essential medicines globally. Since my arrival to Rwanda, oral morphine has become available in the public sector after being added to the national EML. However, further clinical training in its increased and proper use for palliative pain control is still needed. This past August, PIH and others successfully advocated for the addition of 16 cancer drugs to the WHO EML. While this list contains several key cancer drugs that are patented and thusly expensive, there are also generic cancer drugs, including cyclophosphamide, the medication which Jean Paul received. Cyclophosphamide was discovered in 1954 and is typically given in combination with four other drugs as first line treatment of non-Hodgkin lymphoma. Despite its longevity and critical value, this single generic drug can cost PIH up to $10 per dose to procure. In the private market, patients will pay much more. Despite the impressive economic growth in recent years by Rwanda, more than 60% of the country lives below the international poverty line ($1.25 per day), particularly concentrated in rural areas. This reality for the rural poor is simply not compatible with such costs. For this reason, among others, PIH chooses to fully subsidize drug costs.
One morning I entered the ward to start the day and that same ominous cry echoed through the ward. My heart sank. I knew immediately what this meant: Jean Paul’s cancer had stopped responding to the chemotherapy. Despite performing all the necessary studies in the BWH’s pathology lab, there was still no definitive diagnosis. His condition steadily declined. His pain worsened; he became bed bound; then could not eat; no more smile. He returned to sipping soda from a straw delicately held by his mother.
As part of my job requirement, I worked three months per year in the oncology wards of BWH as a part-time hospitalist. That November, I handed over Jean Paul’s care and uncertain future to my colleagues and returned to Boston to work. While celebrating Thanksgiving weekend with my family, I received an email from Rwanda. Time had run out. Jean Paul had passed away.
The oncology wards of BWH are also challenged with indeterminate pathology diagnoses. While greater than 95% of tumors do receive a definitive diagnosis with matching treatment, even with the best pathology resources, some cases are not completely diagnosed. However, as described, the frequency and severity of late stage presentations are quite different. We will never know, had Jean Paul presented earlier, if it would have provided us enough time to discover a definitive diagnosis and proper treatment. Similar to the massive global response to HIV, robust community-level public health awareness and screening campaigns are needed for non-communicable diseases (NCDs), such as cancer, to encourage early detection. PIH in collaboration with the Rwandan Ministry of Health is looking to establish such a network at the community level. Furthermore, the cost of essential medicines, even generic drugs, precludes access to care for millions. Again, a global response similar to that of the HIV pandemic is needed. Advocacy for price reductions by drug manufacturers as well as large scale investments, such as the Global Fund to Fight AIDS, Tubuerculosis, and Malaria, have had an incredible lifesaving impact on millions. As long-term survival of HIV patients continues to improve, by 2030, for the first time the WHO Africa region is projected to suffer more deaths from NCDs than infectious diseases. The PIH-supported model in Butaro illustrates the feasibility of quality cancer care delivery if the proper investments are made, and a scaled-up national cancer control model for Rwanda and other low-income countries will require similar support.
Since its beginnings in 1987 in rural Haiti, PIH has focused on delivering a preferential option for the poor. From the community-based tuberculosis and HIV treatment models to the Butaro Hospital cancer program, PIH has shown that providing quality care in rural communities is possible. Without such support, patients such as Jean Paul are inherently precluded from accessing quality care due to limited local infrastructure, financial poverty compounded by high drug costs, and – the frequently overlooked – structural violence stemming from historical injustices. For far too long, we have been able to say nothing, except “that’s just how it is.” While there is always uncertainty in the ability to cure a given disease for a particular individual, what should never be uncertain is the provision of dignity to each person, regardless of race, class, or nationality, to have the chance to fight the disease, if so desired.
Every time I arrive to the Butaro oncology wards, I think of Jean Paul. His times of both joy and suffering are indelibly implanted in my memory, and at times, I still shed tears thinking of him. I had hoped so fervently that he would make it and have the opportunity to live the life which every kid in this world deserves. At the very least, I am honored to have taken part in dignifying Jean Paul’s life. And I remain honored to continue fighting alongside the Rwandan Ministry of Health against the rising tide of NCDs.
I can still hear his cry echoing through the entire ward. However, his voice is no longer a dark, piercing memory, but a call to action.
Paul Park is the Director of Non-Communicable Disease for Partners In Health – Rwanda. To learn more about and support PIH’s work, please visit pih.org.