Hutch News

Hutch in Uganda: Meet the head nurse of the country's sole cancer center

July 24, 2014

Editor's note: Staff writer Mary Engel and photographer Robert Hood were recently in Uganda to report on the work of Fred Hutch's Program in Global Oncology and the Uganda Cancer Institute, particularly in the area of infection-related cancers. 

Allen Naamala Mayanja

Allen Naamala Mayanja is the head nurse at the Uganda Cancer Institute.

Robert Hood / Fred Hutch

By Mary Engel

KAMPALA, UGANDA -- When Allen Naamala Mayanja was lured away from Mulago Hospital, Uganda’s largest, in 2009 to become the head nurse up the hill at the Uganda Cancer Institute, the staff awaiting her consisted of 15 professional nurses and two nursing aides.

That was the year the Uganda government stepped up funding for the UCI. Today she proudly oversees a staff of 70.

It’s an impressive increase. But then again, so is the rise in patients seeking cancer care. The UCI is the sole dedicated cancer center in a country of 36 million people. Since Sister Allen — the respectful title accorded nurses in Uganda — took over, the number of new patients seen at the UCI has doubled, to 27,000 a year. When return visits are counted, the institute sees 60,000 patients a year. 

“My nurses are so dedicated,” said Sister Allen, a dynamo who is known to set aside her considerable administrative duties and pitch in whenever needed.

Sister Allen works hard to keep her hard-working team motivated. A passionate believer in education — she started out as a midwife and now holds a master’s degree — she is always looking for opportunities for her staff to advance in their careers, going from the yellow belts worn by junior nurses to red to her own black belt.

Fred Hutch’s Program in Global Oncology, which has a research and training partnership with the UCI, helps organize on-site symposiums on research skills for nurses. Sister Allen’s dream is to give her team the opportunity to earn degrees in oncology nursing, not now offered in Uganda.

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Building hope: A shared dream becomes real

Dr. Jackson Orem and Dr. Corey Casper

Dr. Jackson Orem, left, and Dr. Corey Casper, co-directors of the Uganda Cancer Institute / Hutchinson Research Center Cancer Alliance embrace on the roof of the new outpatient clinic.

Robert Hood / Fred Hutch

By Robert Hood

KAMPALA, UGANDA -- The Uganda Cancer Institute, in partnership with Fred Hutch, is building a three-story multimillion-dollar outpatient clinic in Kampala, Uganda. In the shadow of the massive construction zone are the buildings of the current clinic, where patients and their families wait to be seen in the shade of a large courtyard tree. It’s the only cancer center for all of Uganda, a country of 36 million people. When the new clinic is completed in early 2015, it will expand its reach and allow more patients to be treated.

KAMPALA, UGANDA - Uganda Cancer Institute/Hutchinson Center Cancer Alliance

Earlier this week, the UCI arranged a tour of the soon-to-be-finished building for visitors. The tour began on the ground floor and wound through every room and floor of the building. Eventually, the tour reached the roof, and visitors mopped sweat from their brows while admiring the view. That’s when a wonderful private moment happened between two very public men.

Fred Hutch’s Dr. Corey Casper and UCI’s Dr. Jackson Orem, co-directors of the Uganda Cancer Institute /Hutchinson Research Center Cancer Alliance were standing next to each other on the rooftop deck when Casper looked over at the recently-finished UCI inpatient clinic building that stands a few hundred yards away, and he suddenly got misty-eyed as he turned to Orem.

“Look what you’ve built,” said Casper, as he reached out to his partner and friend, “This is an amazing legacy you’re creating.”

The men looked at each other. The usually reserved Orem reached out and hugged Casper as the two men laughed under the blue-gray African sky.

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New clinic

The new clinic is expected to be completed in early 2015.

Robert Hood / Fred Hutch

Dr. Corey Casper, left, and Dr. Jackson Orem

Fred Hutch's Dr. Corey Casper, left, and Dr. Jackson Orem, director of the Uganda Cancer Institute.

Robert Hood / Fred Hutch

Remembering a 'humble man' and a giant of an AIDS researcher

Isma Lubega

Isma Lubega remembers AIDS researcher Dr. Joep Lange.

Robert Hood / Fred Hutch

By Mary Engel

KAMPALA, UGANDA -- The death of Dr. Joep Lange, a giant in HIV research who was on board the Malaysia Airlines flight shot down over the Ukraine last week, sent waves of shock and sorrow around the globe. 

Here in Kampala, Isma Lubega, the driver for the Uganda Cancer Institute-Hutchinson Center Cancer Alliance, felt the loss keenly. For the past four years, whenever Lange came to Uganda to work on HIV projects, which he did about four times a year, Lubega drove him.

That Lubega received a phone call from Amsterdam telling him about Lange’s death says much about the two men’s relationship.

“He was a humble man,” Lubega said simply. “I liked him.”

'Your friend has gone': Saying goodbye to Musa

Mariam Ndagire

Mariam Ndagire, a nurse and case manager at the Uganda Cancer Institute, helped care for 6-year-old Musobya Musa. After his death, she helped his mother and aunt return to their village to bury him. “You try to harden yourself, and you think you’re doing OK,” she said. “And then you lose a patient, and you’re shattered.”

Robert Hood / Fred Hutch

By Mary Engel

KAMPALA, UGANDA -- Mariam Ndagire, a nurse and case manager at the Uganda Cancer Institute, had finished her shift but was still in the office she shares with other nurses when Nawgonda Fazira found her. Fazira was crying.

“Your friend has gone,” she said.

Fazira’s son, 6-year-old Musobya Musa, died Friday evening, just shy of two days after arriving at the UCI. Ndagire was his case manager.

Earlier that day, Fazira, 20, and her aunt, Mukyala Fazira, also 20, had been in the pediatric ward, awaiting the results of a biopsy of Musa’s tumor. His hugely swollen jaw is a common symptom of Burkitt lymphoma, a cancer that is highly curable with chemotherapy. But in sub-Saharan Africa, where Burkitt lymphoma is the leading cause of childhood cancer deaths, distance and lack of money for transportation are all-too-common roadblocks to getting treatment in time and also continuing it long enough to complete the regimen.

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Roadblocks to treatment

Musobya Musa and family

Possible Burkitt lymphoma patient Musobya Musa, 6, waits with his mother, Nawgonda Fazira, and her aunt, Mukyala Fazira, for test results at the Uganda Cancer Institute in Kampala, Uganda, on July 18, 2014.

Robert Hood / Fred Hutch

By Mary Engel

KAMPALA, UGANDA — Musobya Musa almost didn’t make it to the Uganda Cancer Institute, despite how hard his mother and her aunt tried to get help for him.

The women had spent the month of March shuttling the 6-year-old boy to a local clinic near their home in a village in eastern Uganda.  Musa was running fevers, and they assumed, logically enough, that he had malaria.

In April, he had an aching tooth extracted. That’s when the swelling started. And that’s when the clinic doctors told Nawgonda Fazira that her son might have cancer and she should take him to Kampala, Uganda’s capital and largest city, for treatment.

Fazira and her aunt, Mukyala Fazira, had 40,000 Ugandan shillings, or about $15, between them. It was not enough to get to Kampala, 70 miles away. And besides, if they spent the money to get a ride in a taxi or a boda-boda — the crammed mini-buses or darting motorbikes that serve as transportation for most Ugandans — how would they pay for food?

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Ambassador of hope

Dr. Nixon Niyonzima

Dr. Nixon Niyonzima worked at the Uganda Cancer Institute before starting a doctoral program at the Fred Hutchinson Cancer Research Center. After he's finished, he plans to return to the UCI full time. Now home in Uganda for a three-week visit, he pitched in to help out.

Robert Hood / Fred Hutch

By Mary Engel

KAMPALA, UGANDA — Dr. Nixon Niyonzima is a magnet for children as he walks the grounds outside the pediatric ward of the Uganda Cancer Institute. The smallest ones hug him around the knees, taller ones swing on his arms. One shy 14-year-old girl kneels — a traditional way to show respect — and ducks her head, then reaches for his hand. He takes it, strokes her hair, and, speaking in Luganda, asks her mother how she’s doing since her treatment for Burkitt lymphoma, the most common childhood cancer in sub-Saharan Africa. From her mother’s beaming face, it’s clear she’s doing well.

Doctoring is up close and personal at the UCI, where Niyonzima worked before starting a doctoral program in molecular and cellular biology at the Fred Hutchinson Cancer Research Center and to which he plans to return full-time when he finishes his doctorate. Home for a three-week visit, he pitched in to help out.

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