In the United States, less than one in five children diagnosed with cancer will die. In Uganda, only one in five children diagnosed with cancer will survive. The percentage of children with cancer who are actually diagnosed is unknown because access to care remains limited.
“The prognosis for cancer should not be based on where you live,” Howard Weinstein, MD, said.
“We honestly do not know how much cancer we have in Southwest Uganda because we believe that most children die in their community before they are diagnosed,” Barnabas Atwiine, MB ChB, MMed., said. “We believe that we see a small fraction of the children with cancer.”
Dr. Atwiine, who recently completed the East Africa Pediatric Hematology-Oncology Fellowship at the Ugandan Cancer Institute in the capital city of Kampala, leads the pediatric oncology program at Mbarara Regional Referral Hospital (MRRH), a partner of the Mass General Center for Global Health. He is one of 17 Pediatric Oncologists in the country of over 44 million, and the only one practicing in the Southwest Region.
Dr. Atwiine is hopeful that the success Uganda has seen in HIV outcomes can be replicated in childhood cancer given the proper resources. Mass General is working with Dr. Atwiine and MRRH to achieve this goal. Dr. Weinstein, the Mass General for Children Chief of Hematology-Oncology for over 20 years, has been instrumental in the growth of the program in Mbarara over the past four years, making multiple annual visits to provide guidance and training.
At the time of his first visit in 2015, MRRH was in the early stages of developing the pediatric oncology program. Children with cancer were treated in the general pediatric ward, often by necessity sharing space with patients with infectious diseases. “Our initial goal was to try to create a better environment, a clinic and a ward that would really be separate from the general ward,” Dr. Weinstein said.
5K Uganda Color Run for Cancer
Around this time, Wellesley, Massachusetts teenager James Mooney visited MRRH with his parents who had supported projects at the Ugandan hospital through the Mass General Center for Global Health. James was so moved by the visit that he started the 5K Uganda Color Run for Cancer, an annual fundraiser that has “changed the whole face of pediatric cancer at this institution,” according to Dr. Atwiine.
Now in its fifth year, the color run has raised thousands of dollars which have been used to hire nurses, build a beautiful new pediatric oncology ward and purchase medication.
“The color run is really a very creative way to bring awareness to the community about pediatric cancer,” Dr. Weinstein, a two-time color run participant, said. “It’s become an annual event that people are looking forward to and I think it’s really just the beginning.”
The Right Leader
Dr. Atwiine was a pediatrician at MRRH who had always been interested in hematology and oncology. When the Uganda Cancer Institute created the Pediatric Hematology-Oncology Fellowship Program in 2016, he applied and was accepted. Upon completion, Dr. Atwiine returned to MRRH to run the pediatric oncology program.
“Dr. Barnabas has been a real leader in bringing together a team that can care for children with cancer,” Dr. Weinstein said of his Ugandan colleague. “He’s a very skilled, caring and compassionate physician and he’s just creating a wonderful environment to really help these kids.”
“Each day we learn something new,” Imelda Busingye, RN, an MRRH pediatric oncology nurse says of working with Dr. Atwiine. “During the ward rounds he has taken an extra effort when seeing patients to teach us.”
Busingye also credits the MGH Global Nursing Fellowship, which has sent MGH nurses to MRRH to work with their Ugandan counterparts, with helping her feel comfortable working in the pediatric oncology unit. “It’s been a great experience working with the MGH nursing fellows,” Busingye said.
Dr. Weinstein and other Mass General colleagues provide frequent support for their Ugandan colleagues both during visits to Uganda and remotely. Tumor boards and biweekly video conference calls between the teams allow for discussion and advising on issues from new cases to operational needs.
“This partnership is really enriching to MGH and together we believe that we are making a real difference in the lives of children and their families,” said Louise Ivers, MD, MPH, DTM&H, Executive Director of the Center for Global Health, the entity at MGH that oversees the partnership.
Although medical resources in Mbarara are far fewer than in Boston, Dr. Weinstein is optimistic. “That gap is slowly narrowing and I think we’re really going to make tremendous progress in the next couple of years,” he said.
Despite having the key elements of a successful department in place, support is still needed to sustain progress. “Philanthropy remains a real key as far as making any headway going forward,” Dr. Weinstein said.
Dr. Ivers echoes this fact. “Our patients can’t pay us and we never ask them to, so philanthropy really allows us the freedom to focus on the care of the patient.”
The Pediatric Oncology Clinic at MRRH is a welcoming space for children. Large, colorful paintings of friendly wildlife and inspirational messages adorn the walls.
Mary Natweeta, a young mother from a village roughly 30 miles from MRRH, is eager to share her son’s experience in Dr. Atwiine’s care.
“His breathing was not good, and he had a cough. I was so worried about my child. But then we came and he had a biopsy here. Now he is eating and drinking and enjoying. Currently the boy is fine,” she says, her face communicating relief unique to a mother. “Now I have hope my child will be fine. I appreciate it for sure.”
“For me the greatest tragedy of cancer is children who die without anyone suspecting that they have cancer,” Dr. Atwiine says. “The whole aim of this unit is to give every child a chance. A chance at diagnosis, a chance at treatment and a chance at a cure.”