Cancer Care for Every Child

Dr. Cyprien Shyirambere is the Director of Oncology at Partners in Health in Rwanda, where he leads the implementation of cancer care delivery. This includes supporting the daily operations of the Butaro Cancer Center of Excellence, the first national cancer referral center in Rwanda, providing pediatric oncology care, and partnering with Rwanda’s Ministry of Health to scale oncology services nationally. Cyprien grew up in rural Rwanda in a family of seven children. His father died of liver cancer when he was eight. He later graduated from The University of Rwanda with a masters of medicine in pediatrics and child health and received pediatric oncology training from Dana Farber/Boston Children’s Cancer Center. Cyprien oversees all pediatric oncology activities at Butaro Cancer Center. He has dedicated his career to improving outcomes for these patients in Rwanda and in resource-poor settings globally.

While cure rates for children with cancer in North America now exceed 80%, more than 80% of children in low- and middle-income countries with the same illnesses die from their diseases. At Butaro Cancer Center in Rwanda, my team and I have designed a pediatric cancer care delivery model that is feasible, affordable, equity-based, and replicable. My goal is to improve cancer survival rates of the children in low-income settings, partner with the Rwanda Ministry of Health to scale this model nationally, help other Partners In Health sites around the world implement this model, and show the global community how to dramatically increase childhood cancer survival in low- and middle-income countries. We can save hundreds of young lives each year and fundamentally shift the way the global community thinks about delivering complex health care in impoverished settings, similar to the way the HIV/AIDS movement did in the 2000s. 

In Rwanda, 225 children were diagnosed with cancer in 20XX, though we know there are many unreported or misdiagnosed cases. According to our past experience and available data, 70% of children with cancer don’t reach a health facility, and over 50% present with advanced diseases. And the global cancer divide between wealthy and impoverished nations is only growing among children.

Frustratingly, the assumption that it is too expensive or complicated to tackle childhood cancer care in a comprehensive way prevents policymakers and international aid groups from even considering including it in policies, budgets, and programming.

In addition, in most low-income countries, even if there were funding or political will, there is a lack of pediatric oncologists, pathology labs, cancer drugs, imaging equipment, radiotherapy, and other resources to address the childhood cancer survival gap.

 Without these resources or the political will to change this situation, children in developing countries die slow, painful deaths. In a search for answers, their families upend their lives to consult hospitals and traditional healers across the country and continent, often plunging them deeper into poverty. For these young patients, a cancer diagnosis is a death sentence; for their families, it is both tragic and catastrophic. 

Our project reimagines the inequitable model of pediatric cancer care delivery developed in wealthy countries. Our model is centered on the following components to decrease cost and improve patient survival:

• Task-shifting: Our model decentralizes tasks from the highest level of clinician to less specialized clinicians, increasing the number of staff who can deliver care and decreasing cost.
• Training of non-oncologists: Given the shortage of specialists in Rwanda, we train non-oncologist clinicians to deliver much of the care that oncologists deliver.
• Standardized care protocols: To ensure quality and safe care, we develop and utilize standardized care protocols that help clinicians make decisions about care and guide care delivery.
• Partnerships with universities and hospitals in high-income countries: We partner with Boston-based universities and hospitals to help fill gaps, collaborate on research, build lab capacity, and train our clinicians and staff.
• Government partnership: We operate in the context of public health systems to embed our work in the national network and avoid parallel system building. This facilitates national scale-up and brings additional resources to our work. Research: At every opportunity, we collect data and conduct research to better understand the challenges and design new strategies for improvement.

I work with children and their families from across Rwanda and East Africa to provide free or affordable cancer care. Most often, my patients are impoverished, and they often present at later stages in their disease, having visited many other healers and facilities looking for answers. They have often been misdiagnosed or have not been given a diagnosis at all.

To address my patients’ needs, first and foremost I provide high-quality and compassionate care that is mostly free. We provide timely diagnosis and start treatment immediately, tailoring care regimens to the patients’ specific diagnoses. We also offer a vast array of social support services, including counseling and mental health support, financial support for travel costs, food and lodging, and even long-term housing.

 Patient engagement is central to our work. Before starting chemo, every patient and their family gets a mental health assessment and counseling. Social workers work with clinicians to identify patients who need support. Our department meets weekly to discuss these topics. And at the hospital level, there is a monthly Patient Voice forum where all patients can meet with hospital leadership to share their experiences, complaints, and suggestions. This feedback informs how we provide care and design interventions.

Ending the premature deaths of impoverished children from treatable cancers can seem like an intractable problem to solve. But my work is building awareness of and helping guide new policies to build cancer care delivery programs and systems in low-income settings. My work also addresses the first dimension. Specifically, my team and I seek first and foremost to make care available to those traditionally left behind by modern medicine: the rural poor. We believe that preferentially designing our interventions to meet their needs is the best way to ensure that all people receive the benefits of modern cancer care.

When I was a resident at a teaching hospital in southern Rwanda, a cancer diagnosis was a death sentence. There was almost no care available in the country. But I often encountered children on the pediatric ward with cancer diagnoses, and I would desperately try to treat them with the inadequate resources we had available then. Some of my colleagues, who were often socialized for scarcity, urged me to save myself the frustration and simply let them pass away. But when I learned children in the United States survived these cancers at high rates, I could not abandon my young patients to die. Sometimes, my early efforts resulted in the shrinking of their disfiguring facial tumors or added months to their lives, and these small successes fueled my desire to keep trying.

In 2012, PIH and the MOH opened Butaro Cancer Center of Excellence with a team of dedicated staff and clinicians. When I learned of what they were doing there, I knew I needed to be a part of it. I joined the team to open the first pediatric oncology unit at the facility, where my priority was to grow and develop the pediatric oncology program.

Too often, I see young children, full of potential to do great things and help my country on its incredible upward trajectory, dying because they were not lucky enough to be born in a wealthy country. And there are many health and development “experts” who don’t think what my colleagues and I do to save these young lives is “sustainable” or even ethical because of the complexity and cost of cancer care or the environment where we try to provide it.

In my early days, just seeing a child’s tumor shrink was inspiring. Now that my colleagues and I have developed a model that saves lives, we will not accept anything less than the same care and survival rates as children in wealthy countries. We will not accept others’ low aspirations for our children’s survival.

 I believe every life matters and that health care is a human right. It’s not a choice. You cannot choose not to do everything in your power to save someone’s life. I know one day, this could be someone I love, and what I wish for my loved ones is what I do for the children and families I serve at Butaro Cancer Center. 

I have spent the past decade working with colleagues to pioneer a way to deliver safe, effective, and dignified pediatric oncology care within a public health system that can only afford to spend $56 per capita on health. When we started, we had to build almost everything from the bottom up, and today, our pediatric oncology unit has a state-of-the-art pathology laboratory, a formulary with over 25 chemotherapy drugs, and a team of 4 doctors and 10 nurses. There is no degree one could get that would provide this kind of expertise.

In addition to my formal education, I have participated in a number of professional development programs and trainings, including the GLOBE Fellowship at Dana Farber/Boston Children’s Cancer Center and the AORTIC African Cancer Leadership Institute. I also work every day with specialists from our partner institutions in the United States. These opportunities have connected me to world-class pediatric oncology and research training.

I have collaborated on 10 publications in international, peer-reviewed medical journals and currently manage seven research and implementation grants. I am Principal Investigator on four of those grants. And I manage a team of around 15 people.

In doing this work, I also have developed the advocacy skills to influence health policymakers, get protocols on the national protocol list, and get chemo drugs on essential medication list, and have critical equipment included in the government’s procurement list.

COVID-19 has upended the delivery of cancer care at the Butaro Center of Excellence. The restrictions on movement, loss of livelihoods, and disruptions in travel and supply chain have all posed significant challenges for our patients to get to our facilities and for us to deliver timely care. These disruptions are life-threatening for our patients. When it became clear that we needed to figure out a solution to these challenges, as Director of Oncology, it was ultimately my responsibility to quickly adapt and ensure that our cancer patients’ care was not disrupted and that they weren’t exposed to COVID-19.

We needed a fast, proven, and safe way to reach patients with minimal human contact or cost. We decided to turn to a proven partner, Zipline. We partner with Zipline to deliver blood products to the remote MOH health facilities where we work. We asked them if they would also deliver oral chemotherapy drugs to health facilities in our patients’ communities, and they quickly agreed. In just three days, we got this partnership off the ground and ensured that none of our patients’ treatment regimens were interrupted. To date, we have served 71 cancer patients from different parts of the country. 

When I joined Butaro Cancer Center as the head of pediatric oncology, childhood cancer treatments was still very new to Rwanda, and we were using a very low intensity treatment regimen for children with Acute Lymphoblastic Leukemia, one of the most common types of childhood cancer. Our survival rate was as low as 20%, whereas in the United States, the survival rate is over 85%.  I immediately began assessing the gaps that led to this low survival rate and how we could increase it. I added more drugs to the formulary, worked with hospital leadership to make blood products more available, trained the nurses on how to manage the new drugs, and set up a research project to understand the drivers of these poor outcomes and our measure impact.

 In my first 16 months leading the program, we were able to upgrade the treatment regimen and the supportive treatment, and in 2 years, survival of children with ALL improved to around 45%. 

My colleagues and I have developed a model of cancer care that will reshape the world’s response to cancer for the poorest and most vulnerable children. We are advancing equity in global oncology care through a high-impact, multi-pronged approach to providing quality care and treatment for cancer in some of the most rural and impoverished places around the world, using proven methodologies in early detection, prevention, and treatment. We integrate this work with education and research in ways that support national ministries of health to create oncology program design for national scale, and create an evidence base to prove what’s possible globally.

Our model not only challenges assumptions of what’s possible in pediatric cancer care delivery for the poorest children, but it also challenges the widely accepted model of pediatric cancer care delivery in high-income countries, which is heavily dependent on specialists and expensive care. Elements of our model could inform global policies to reduce the cost of cancer care and make it more accessible for marginalized populations everywhere. 

Besides being conceptually innovative, we also use innovative methods in the delivery of care. For example, we utilize tele-pathology in which our pathologists utilize a slide scanner to upload the image of a biopsy sample to the cloud, and our partner pathologists in the US can read the slide as if they were sitting in our lab in Rwanda. This increases the accuracy of our results and builds the capacity of our local pathologists.

In the broadest sense at Partners In Health, our theory is that health care is a human right, and only governments can confer rights on their people. Thus, we work in collaboration with local governments to build public health systems, starting in the poorest, most remote places where the burdens of poverty and disease are greatest. Working this way ensures that meaningful change is lasting beyond PIH’s intervention and that the proverbial rising tides lift all boats— starting with the hardest-to-reach populations makes scale-up simpler in the less-difficult locations and populations.

More specifically, at the community level, we provide individual patient care tailored to patient and community needs. Cumulatively, this care informs how we design and implement clinical programs and interventions. These programs and interventions are accompanied with data collection and research to measure the impact and identify ways to improve. This data and research is published in peer-reviewed medical journals and is also shared with partners and the local government for scale-up, which we often assist with. All of these activates filter into a global advocacy platform that is locally-informed, results-based, evidence-supported, and scalable.

Undergirding this theory of change are the following key conditions:

·         Work where we are invited by public institutions for long term partnership

·         Start in the poorest, most marginalized communities, often remote and rural.

·         Invest directly in national/local public sector institutions

·         Work in close collaboration with national/local public leaders and align all work with national plans

·         Create long-term local jobs with training, fair pay, job security, and opportunities for career advancement

·         Engage international experts when needed for specific expertise that is not available locally, with explicit goal of training local experts to take on these roles over time

·         Set aspirational goals that are not restricted by limited resources and commit to finding necessary resources over time 

·         Base any program or project standards on evidence showing best outcomes rather than cost

·         Employ a patient-centered approach, clinically integrated approach at community, primary, and secondary levels.

My project currently serves 162 active pediatric oncology patients, including follow-up patients from the previous year. This year, we will serve around 140 new children, and in 5 years we will serve 700 children with cancer from Rwanda and East Africa. In addition, Butaro Cancer Center of Excellence is an innovation hub and learning center. The research and learnings we generate here help influence national pediatric oncology policy, with potential to impact every child in Rwanda who has cancer.

In the next year, our primary goals are to increase pediatric cancer survival rates, continue to scale up pediatric oncology care across Rwanda, and mitigate the impacts of COVID-19 on our patients’ access and treatment. Specifically, we plan to:

-          Implement the patient navigator program to reduce treatment abandonment.

-          Introduce social worker home visits to address barriers to care that can lead to abandonment.

-          Add more oncology drugs to the formulary.

-          Start implementation of a “shared clinic” in partnership with MOH colleagues from the Rwanda Cancer Center to improve communication around radiotherapy patients.

-          Advocate with the public health insurance scheme to include elements of cancer care in their coverage.

-          Establish a quarterly cancer symposium with all stakeholders from MOH hospitals to increase collaboration.

-          Conduct a review and revision of the national oncology protocol with the cancer symposium.

In the next five years, in addition to the goals above, our longer-term goals are to continue to help other PIH sites expand their pediatric oncology services and expand Butaro Cancer Center.

1. Foremost is the challenge of adequate funding. Our operational budget represents what we can feasibly accomplish with the resources available. However, we have significant aspirations, and the available resources do not match those aspirations.
2. Our space is limited, so pediatric oncology patients stay on the same ward as the children with general illnesses. We do our best to limit cross-infection, but this does expose our already immuno-compromised oncology patients to potential illnesses. 
3. We have limited laboratory and imaging capacity. We rely heavily on teaching hospitals in the capital city for CT scans and MRIs, which are the standards for diagnosis and staging of childhood malignancies.
4. Certain childhood cancers require expensive interventions, including expensive drugs and isolation for supportive care.
5. Because cancer care is still relatively new in Rwanda, we must address cultural norms and misconceptions that lead to delays in health-seeking behavior. For example, believing cancer is incurable, some patients do not seek care. Some families also seek care from traditional healers first. 
6. Most of our patients are extremely impoverished, and this has a significant impact on their ability to seek, find, and complete care.
7. COVID-19 has caused travel restrictions, which have led to missed appointments and delayed care. Many patients have also lost their incomes and their ability to pay for their public health insurance, and it has also disrupted supply chain related to cancer care.

1. Our teams in Rwanda and Boston work diligently to identify support for Butaro Cancer Center, both funding and in-kind donations. 
2. We have an ambitious plan to fund the expansion of Butaro District Hospital in two phases over the next five years.
3. With the expansion of Butaro Cancer Center, we hope to invest in better imaging capacity, including space, equipment, and staffing. We also hope to upgrade our laboratory capacity to include a microbiology department.
4. Once our infrastructure and staffing improve, we can revise our formulary to include the necessary drugs to treat even the most complicated diseases. We will also continue to advocate with pharmaceutical companies to make these drugs more affordable. 
5. We plan to work with our vast network of Community Health Workers to build awareness of early signs of childhood cancer and increase the health seeking behavior amongst our population.
6. We have created an innovative patient navigator program to help patients and their families manage their cancer journey. This program provides patients with advocates who do home visits and connect them with psychosocial support and financial resources.
7. We partnered with Rwanda Military Hospital in Kigali to set up an infusion center to serve cancer patients in Kigali, minimizing travel for many patients. We also sent PIH cars to pick up patients from their homes and provided lodging and food for patients.

Ministry of Health of Rwanda

Dana Farber Cancer Institute

Boston Children’s Hospital

Brigham and Women’s Hospital

Partners In Health/Inshuti Mu Buzima is a non-profit organization. We partner with the Government of Rwanda (GOR) and Rwandan Ministry of Health (MOH) to strengthen the public health system’s ability to deliver high quality, dignified health care to all Rwandans. Working in the public sector ensures the sustainability of our investments because we help build local capacity and lasting public institutions. It also exemplifies our belief that health care is a human right. As an NGO, we are not in a position to guarantee that right, but governments are.

Butaro Cancer Center is a public facility, owned and operated by the MOH. Many of the employees advancing our work in pediatric oncology—benefitting from training, mentorship, and capacity-building opportunities—are MOH employees. In this way, our goal is to ensure that the breakthroughs we make in pediatric oncology care happen in the context of public health care and that they, first and foremost, serve the poorest children in Rwanda.

Partners In Health/Inshuti Mu Buzima relies on international public and private grants and donations to fund our operations. We use these grants to purchase the medicines, equipment, and supplies needed to provide cancer care; to pay the salaries of our oncology staff; and to fund the operations of the cancer center. 

In addition, as described above, the Rwandan MOH contributes to the financial sustainability of this work through the ongoing funding of the operation of Butaro District Hospital, where the Butaro Cancer Center of Excellence is housed. We rely on this public facility and the publicly funded health care workers to collaboratively operate our program.

In the last fiscal year (July 1, 2019- June 30, 2020), the Kipnes Family Foundation provided $688,000 towards costs, including radiation, specialist salaries, and chemotherapy drugs, as a part of a larger grant they provide PIH. Another private family foundation donated $20,000 toward medication and pathology reagents. These two grants will be renewed in fiscal year 2021.

I seek to raise a minimum of $506,000 in grants to support the operation of the oncology program at Partners In Health Rwanda in fiscal year 2021, which is the foundation of my work to improve pediatric cancer survival and create a scalable, replicable model for low-resource settings.

In addition, over the next three years, Partners In Health in Rwanda seeks to expand Butaro District Hospital, where the Cancer Center is housed. The Cancer Center has outgrown the space we are using in Butaro Hospital, negatively impacting both the cancer patients and the other hospital patients. my team and I seek to raise support to expand the hospital, creating a new space for the Butaro Cancer Center of Excellence. In total, we seek an estimated $5 million for this expansion project. Once completed, the new Butaro Cancer Center of Excellence space will amplify our ability to improve childhood cancer survival rates; conduct and publish research for the global community; and host local, regional, and international trainings for partners interested in expanding and replicating our model.

The estimated expense budget allocated for the Oncology Program for the upcoming fiscal year is $1,093,388.