Annual Report 2014
By Dr. Rachel Tompa
When Fred Hutch's Dr. Corey Casper first visited the Uganda Cancer Institute (UCI) in Kampala, Uganda, he was disturbed by the arresting sight of children with the most common pediatric cancer in Uganda, Burkitt lymphoma. The disease, triggered by the Epstein-Barr virus, causes fast-growing and disfiguring tumors, usually on the jaw.
An expert in infection-related cancers, Casper understood all too well the senseless tragedy of what he saw. Burkitt lymphoma is highly curable — in the U.S., a simple chemotherapy regimen cures up to 95 percent of kids with this disease. When Casper first visited Uganda's sole cancer treatment facility in 2004, only an estimated 30 to 40 percent of Ugandan children with the cancer survived a year past diagnosis. And those were the ones who got treatment. Many do not have access to care.
When he returned to the U.S., Casper and his family sent a personal donation to the UCI for chemotherapy for Burkitt lymphoma patients, but the next time he visited it became clear the funds had not gone far enough. How could they? The facility had limited pain medications, running water and electricity. There was only one oncologist to serve the entire country.
"I realized that unless we deal with this cancer holistically, there’s no point," said Casper, who also heads Fred Hutch's Program in Global Oncology.
Casper and his Fred Hutch colleagues built a partnership with the UCI to start tackling the problem at its roots. Through the UCI/Hutchinson Center Cancer Alliance, they laid the groundwork for improving cancer research and care, from bringing Ugandan doctors to Seattle for cutting-edge oncology training to ensuring UCI nurses had enough latex gloves to administer chemotherapy. And they began planning a program to treat every Burkitt lymphoma patient at the UCI.
Later, a fortuitous chance drew Casper together with benefactors Lisa Martin and Ken Fabert, himself a practicing family physician. The couple already supported Fred Hutch research, but when Erica Sessle, at the time the managing director of the UCI/ Hutchinson Center Cancer Alliance, moved in next door to Martin and Fabert, neighborly small talk led to the next step in their giving.
"It was literally an over the backyard fence kind of thing," Fabert said. "We had a few social chats about [Sessle's work]. We said, 'How's it funded, how's it structured, what are you doing?' and one thing led to another."
Through Sessle, they met Casper and others on the Fred Hutch team. The more they learned, the more intrigued they became.
"There's a mantra in philanthropy: As much or more than institutions or organizations, you fund people," Fabert said. Martin added, "There are a lot of good people there!"
Through their family foundation, the couple made a three-year pledge to support the team's work. Their gift in combination with funding from the Burkitt Lymphoma Fund for Africa and the National Cancer Institute launched the Burkitt Lymphoma Project. Private support is integral to the researchers' comprehensive approach, Casper said. Most grants he could apply for were restricted to research, but first and foremost, the children needed treatment — treatment this funding allowed them to provide.
Although UCI researchers established combination chemotherapy's power to cure Burkitt lymphoma nearly 50 years ago, Casper's team needed to show the power of their system to overcome all barriers Ugandan children with the disease face, from awareness and diagnosis to completed treatment. The Burkitt Lymphoma Project topples these barriers by purchasing chemotherapy during shortages in government-supplied drugs, reimbursing families for transportation to and from the UCI, creating an electronic tracking system, supplying daily meals to patients, and pairing families with case managers for one-on-one assistance.
Since it began enrolling patients in 2012, the Burkitt Lymphoma Project has seen 125 children with the disease. The team is already documenting incredible changes (see story below), all of which are adding up for their patients. Now, more than 60 percent of these kids survive for a year or more past treatment, almost double the survival rate before the Fred Hutch program began.
Dr. Innocent Mutyaba is one of the Ugandan doctors who trained in oncology at Fred Hutch. Now he coordinates the Burkitt Lymphoma Project on site in Kampala, and he's pleased with their progress.
"For Burkitt, we have fantastic success stories," Mutyaba said.
To cure even more children, the team is working with Ugandan dental providers to refer suspected cases earlier, since dental problems are common early signs of Burkitt lymphoma. And they are improving diagnostic techniques, eagerly anticipating the on-site pathology lab that will be part of a new Fred Hutch/UCI facility slated to open early in 2015.
They've also set a track record to be emulated. UCI clinicians treating patients with Wilms tumor, a pediatric kidney cancer, are now implementing some of the tools the Burkitt Lymphoma Project put in place, including case managers, electronic medical records and transportation reimbursement.
Martin and Fabert have been pleased to see the immediate effect their support has had in Uganda and how far their dollars have gone to save lives there.
"The amounts of money that our grant covered aren't huge amounts," Fabert said. "It's nice to think that there are niches … where relatively modest grants can potentially have a significant impact."
Looking at the bright-eyed boy sitting on his father's lap at the Uganda Cancer Institute, it's hard to believe that 4-year-old Mike Kiragga once had a tumor on his jaw so huge he couldn't turn his head.
Kiragga had Burkitt lymphoma, one of the fastest growing cancers and the leading cause of cancer deaths in children in sub-Saharan Africa — but one that is highly curable if treated in time with chemotherapy.
But his father, Ronald Lumala, a farmer from a small village in west-central Uganda, originally had his own explanation for the mysterious swelling that first appeared in December 2012: He feared that Kiragga had been bewitched.
How else to explain a lump that kept growing and growing? No one in his village had seen anything like it, and his neighbors agreed that witchcraft was involved.
Lumala took his son to traditional healers, trading goats for care. Nothing helped. So he decided to try his village medical clinic, which referred him to Mulago Hospital, the nation's largest, in Kampala. Eventually that hospital, after doing a biopsy, sent him to the UCI.
There he met Susan Nabakooza, a UCI nurse who also works as a case manager for the Burkitt Lymphoma Project, a joint initiative of Fred Hutch and the UCI. Kiragga was admitted to the UCI and treated for his fever and pain. Once the diagnosis was confirmed, he was immediately started on chemotherapy.
It was Feb. 13, 2013. Virtually overnight, the tumor shrank by almost half.
Kiragga spent two weeks as an inpatient at the UCI, where he was closely monitored. He was given his second dose of chemotherapy, and the tumor shrank yet again. He was discharged and his father was told to return again every two weeks until the full regimen of six treatments had been completed.
Kiragga completed his cancer therapy in May 2013, and he continues to come into the UCI for follow-ups. There is no sign of the cancer.
"He never believed he would have that child back," said Nabakooza. "Now every time he sees the child, he's just so happy."
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