Children, cancer, and courage

By Flavia Nassaka

Uganda’s only pediatric oncologist speaks out on her challenges and how the clinic could turn around treatment

Barely five minutes into the interview, Dr.  Joyce Balagadde Kambugu checks her watch.  It’s 5pm when most office workers’ retire but she has another appointment in the next couple of minutes.  She is the only pediatric oncologist – a doctor who has specialised in treating cancers in children – in the country

“It’s a lot of work,” says the neat looking woman with short-cropped treated hair, well-polished nails, and easy smile.

While the word ‘busy’ characterises most of her days,March 07 was extraordinary. A new state of the art children’s outpatient clinic was officially opened at the Uganda Cancer Institute (UCI) and as the head of Pediatric Oncology service, Balagadde was tasked with taking visitors around the new clinic which they say is so far among the best equipped cancer clinics in the East African region.

The clinic, with its new yellow and white painted walls and furnishing, stretches from part of ground floor, to the first and second floors of the Fred Hutch Cancer Center, a new block opened in 2015.

Apart from the waiting area which is decorated with bright colored wall hangings and a big flat screen TV, the clinic has four outpatient doctor’s consultation rooms, an emergency room, a chemical mixing area, phlebotomy (blood drawing) area, and an infusion area.

About $10 million was spent to put up the facility. This includes procuring all the equipment in the clinic. About $2m was got from the United States Agency for International Development and about $1m from the government. The rest of the money was paid by Fred Hutchison Cancer Research Center, based in Seattle, Washington that has partnered with Institute to provide better treatment and cut cancer deaths in Uganda.

Balagadde seems excited about the new clinic.

“Infusion was previously given on a small chair but we now have nice chairs that can even be flattened during chemotherapy,” she says as she shows me around the Infusion area.“Previously, we’ve had to use emergency trolleys where cannulas and masks are for adults,” she adds, smiling again, even though her tired look remains.

As happens with every unit at Mulago, Uganda’s oldest government hospital, the clinic is already buzzing with children hanging around the infusion area seen with cannulas around their tiny wrists. On a daily basis, Balagadde says, 35 to 40 children report to the institute with different forms cancers. Burkitts lymphoma which affects the circulatory system is the most common, followed by leukemia and Kaposi Sarcoma among the HIV-infected children. While some are admitted to the children’s ward on the fourth floor, most are treated as outpatients. As of now, doctors say, 8 in 10 children diagnosed with the disease die. With better care 80% of them could live.

“All these cancers are curable but patients arrive late. Even here when they arrive, we are overwhelmed by the numbers,I am the only pediatric oncologist,” she says.

Balagadde says most pediatricians generally want to work with happy kids, not with the seemingly hopeless situation of having to look at sick kids and being unable to do anything about it.She was no different.

“It had never crossed my mind that I would end up in cancer treatment,” she says.

With encouragement, Balagadde in 2009 suddenly found herself joining the institute. Her idea was “to give it a try”.  She stayed. In 2011, she got training opportunity to become the institute’s pediatric oncologist.Currently, she works with one pediatrician, two medical officers, six nurses and one counselor.

With such a team and lack of other resources, Balagadde says they have had to do without adolescent service where they have to exclusively handle cases of those between the age of 12 and 18. As a result, some children are catered for under the adult service.They also have to plan their time meticulously. On Monday, they handle leukemia cases, Tuesday solid tumors like kidney, Wednesday is for re-visits for those who have cured or still on treatment, Thursday is for lymphomas and Friday is for emergencies.

Hope for change

Dr. Jackson Orem, the Executive Director at the Uganda Cancer Institute says, for a long time,people assumed cancer only affects adults. This could have partly been the reason why many did not choose to specialize in childhood cancers. For now, the institute receives 350 to 400 cases of cancer in children below 15 years on average per year and the number may increase ever since the institute was chosen by members of the East African Community to be the region’s center of excellence for cancer treatment and research.

With the functioning of the clinic, Orem says these ugly statistics are going to be reversed.

“This means an evolution of specific care targeting children with cancer,” he says.“With dedicated service, there will be better care and better outcome.”

Orem says children are different and need to be treated differently. He says the Institute needs to get the other non-specialist pediatrician doctors working in childhood cancer department to super specialize in oncology.

Already, he promises a specific vote within the Institute’s annual budget to be allocated to the children’s clinic and ward.

From this budget and other resources from partners, a pediatric oncologist fellowship programme is being organised and will start in August. It will be manned by a team of international trainers. With this, they hope more doctors will be equipped with knowledge of handling children. After this training programme, Orem says the institute will come up with its own training programme such that physicians interested in cancer will be trained from time to time.