Building Cancer Care from the Ground Up in Rwanda

In 2011, Cyprien Shyirambere was working as a pediatrician at a teaching hospital in southern Rwanda, where he occasionally saw children who had been diagnosed with cancer. There wasn’t much he could do to help them, recalls Shyirambere, who is now the director of oncology for the nongovernmental organization Partners In Health in Rwanda. Sometimes he would be able to get access to enough chemotherapy to put a child’s cancer into remission for a month, but the hospital didn’t have the resources to do much more than that. His young patients inevitably, heartbreakingly, died.

At the time, there was essentially no cancer care available anywhere in Rwanda. That meant that for most of the 11 million residents of the nation, a cancer diagnosis was almost certainly a death sentence. But that year, the government of Rwanda invited the Dana-Farber Brigham Cancer Center and Partners In Health to work together to establish a cancer center in Butaro, in Rwanda’s Northern Province. The goal from the very beginning was to create a comprehensive cancer center, which would make it the first such center in East Africa.

PIH, including its cofounder Paul Farmer, MD ’90 PhD ’90, had worked in Rwanda since 2005, contributing to progress in treating HIV, malaria, and other leading causes of premature death. But Farmer saw a gap in cancer care.

The Butaro Cancer Center of Excellence opened in 2012, and within its first year more than 1,000 patients were treated there. In the years since, the center has seen more than 18,000 patients, saved thousands of lives, built and tested key elements of robust national cancer screening and prevention programs, and trained a generation of clinicians who are proving that effective cancer care is possible anywhere.

Harvard Medicine talked with a few of the people involved in the early years of the center about their experiences helping to build an effective, sustainable cancer program.

Establishing the foundation

When Lawrence Shulman, MD ’75, first visited Rwanda in 2011, he was already a veteran of several campaigns to build new systems for treating cancer. Now the codirector of the Center for Global Oncology at the University of Pennsylvania, Shulman started his career as a medical oncologist before most hospitals, even in the United States, had oncology departments. He recalls mixing chemotherapy drugs on the desk in his office in the 1970s, when he was working at Beth Israel Hospital.

Shulman met Farmer and PIH cofounder Jim Kim, MD ’91 PhD ’93, when Farmer and Kim were interns at Brigham and Women’s Hospital. When Farmer was in Haiti in the early days of PIH, he enlisted Shulman’s help to treat cancer patients. At first, they practiced a sort of ad hoc telemedicine, with Farmer calling Shulman to talk about diagnoses and figure out how to get chemotherapy drugs delivered from Boston to rural Haiti (often by packing them in Farmer’s suitcase). Later, they worked together to help build a robust cancer program that continues today at Mirebalais Hospital.

When Shulman started working on a plan for cancer care in Rwanda, he knew it would be a challenging experience. “When we first went in 2011, we were starting from zip,” he says. “There was essentially no cancer care in the country, and if you got cancer, you died.”

There were no medical oncologists, no radiation therapy facilities, a single, part-time pathology lab, and just one CT scanner in the entire country, Shulman recalls.

PIH opened a 150-bed community hospital in Butaro in 2011 that served as a medical hub for a network of small clinics staffed by nurses. As work on the cancer center progressed, PIH put the fundamental elements of a cancer treatment system in place. General surgeons at the hospital learned to perform basic cancer surgeries, and the cancer center was staffed with an internist, general practitioners, and nurses. PIH also began to explore possibilities for integrating cancer care into the district’s health and primary care systems.

Shulman spent time on the wards at Butaro, delivering care; training the local clinical staff; working with visiting doctors, researchers, and trainees from HMS; and developing detailed instructions to support care for the most common cancer types that they could treat with the resources at hand.

“The other thing that we committed to from day one was that we would keep careful records of what we were doing so that we would know exactly what we were accomplishing, where the gaps in our care were, and where we could do better,” Shulman says.

Continuous improvement

Temidayo Fadelu became the associate director of oncology for PIH in Rwanda after completing his internal medicine residency at the University of Pennsylvania. He grew up in Nigeria and knew he wanted to help meet the rising demand for cancer care in Africa.

One of the many challenges of delivering cancer care in any setting is the capacity to be emotionally present but not let it immobilize you, says Fadelu, who is now an HMS assistant professor of medicine and an oncologist at the Dana-Farber Cancer Institute Center for Global Cancer Medicine. That was especially difficult in his early days in Butaro.

“The amount of tragedy I saw every day while I was in Butaro initially was not easy to cope with,” he says. “We need to be present with the patient in front of us so that they get what they need in that particular moment. We also need to be able to close the chapter on that patient when we go see a different patient.”

Fadelu emphasizes the importance of taking a similar in-the-moment approach to improving cancer care systems. You have to start where you are and do the best you can with the available tools and look for little ways to improve the situation quickly whenever you can, he says.

For example, when the center first opened there were no pathologists, so clinicians sent whole biopsy samples to Boston for processing. Over time, staff in Butaro traveled to Brigham and Women’s and Dana-Farber for training. Once they learned to process biopsies, they were able to send images of the prepared samples for review instead of whole samples. And now, with two histopathologists on site, 90 percent of samples are read in Butaro.

Fadelu still runs a weekly tumor board — either in person or remotely — with the team in Butaro, discussing patients and samples to help with tricky diagnoses and continue to train clinicians at the center.

Progress through research

In the months before the Butaro Cancer Center opened, Lydia Pace was already in Rwanda helping to treat patients with cancer at Butaro Hospital. Pace, now an HMS associate professor of medicine at Brigham and Women’s, started working at Butaro Hospital in 2011, after finishing her residency.

During her time in Rwanda, Pace helped identify gaps that were leading to a startling number of diagnoses of advanced breast cancer in young women. Through her research, she discovered that many women, community health workers, and clinicians weren’t aware of the early signs of cancer or how to respond to them. Many women also worried that treatment might be unaffordable and that even when the care was free, the time required could prevent them from working.

One of her early research projects found that women faced 15-month delays from the onset of breast cancer symptoms to diagnosis. “It was the longest documented delay in the literature anywhere in the world,” Pace says. That research helped secure funding for a pilot project to improve early detection. “Working with this team taught me that research can be a powerful tool for bringing understanding of an issue and helping direct resources to solutions,” Pace says.

The goal of the research was always to try to improve care. For one project, Pace and her colleagues created a strategy for building capacity for early breast cancer diagnosis in a country with no mammography machines and very few radiologists. Pace recruited a group of breast radiologists from Brigham and Women’s to train general practitioners, nurses, and nurse midwives in Rwanda to use ultrasound for breast cancer diagnosis. They established regular breast clinics staffed with trained clinicians and saw dramatic increases in patients seeking care and earlier cancer diagnoses, even without specialist radiologists or oncologists on site. Pace notes that the breast cancer early diagnosis program has now been scaled up by the Rwandan government to include 60 percent of Rwanda’s districts.

Essential health workers

In 2009, when Emmanuel Kamanzi gave up a prestigious job at the University of Rwanda to work for PIH at a rural hospital in southeastern Rwanda, his friends asked him why he would leave his comfortable life in the city to live in a place with no internet and no running water.

“I wanted to be there because I thought it was the best place to work on the root causes of health disparities,” Kamanzi says. “I realized that I was driven by a passion for helping people.”

In 2010, Kamanzi moved to northern Rwanda to oversee PIH’s projects there, including the construction of the cancer center and an oncology support center with housing and spaces for families to cook. Before long, demand for treatment outgrew the space available at the center, and Kamanzi managed the construction of the new Ambulatory Cancer Center.

Kamanzi says that instead of hiring skilled workers from Kigali to do the work, PIH hired master builders from the capital to train workers in Butaro. These workers have used their newfound skills to help build the growing community, and in their own way, each is making Rwanda a healthier place. “We’re all essential health workers,” he says.

More recently, Kamanzi decided to return to school and is now a student in the HMS master of medical science in global health delivery program, where his mentors include Lydia Pace. For his thesis project, Kamanzi plans to conduct a formative study to adapt new World Health Organization guidelines for patient navigation programs for the current clinical and social context in Rwanda.

The work continues

About 70 percent of the 10 million deaths worldwide from cancer each year occur in low- and middle-income countries like Rwanda, and both the number of deaths from cancer and the percentage occurring in these countries are expected to increase. In the years since its founding, Butaro Cancer Center has transformed the diagnosis and treatment of cancer in Rwanda and become a much-needed model for delivering cancer care in a resource-limited setting.

Still, many challenges remain, including potentially fatal delays in diagnosis and treatment, high costs for necessary drugs, and a lack of specialist surgeons. As an example of both the progress that has been made and the work that remains, Shulman points out that the survival rate for Hodgkin’s lymphoma in Rwanda is now up to 50 percent, a dramatic improvement over the years before the Butaro Cancer Center opened, and work continues to improve results. But, he adds, “in the U.S., it’s 90 percent.”

This is also a precarious time for global health efforts that depend on funding from the U.S. government. The National Institutes of Health has provided crucial funding for pilot programs, research, and training for some of the work at Butaro. Rwanda’s health initiatives have received funding from USAID programs and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), among others. Some of these programs have already been cut, and others are in jeopardy.

Shyirambere has seen the benefits of the years of work firsthand. Not long after he first arrived in Butaro, in 2014, a child he knew from his time in southern Rwanda developed cancer and came to Butaro Cancer Center. The child had B-cell acute lymphoblastic leukemia, a common cancer with a high survival rate when treated, and received treatment in Butaro for 32 months. On a recent visit to the south, Shyirambere ran into the child’s father and learned that the boy was doing well.

“Every human being deserves dignified health care,” Shyirambere says. “Where you were born should not determine whether you live or die.”

Jake Miller is a science writer in the HMS Office of Communications and External Relations.