Miriam Sevy was a force of nature. That is how Dr. Steve Kussick, president of the board for the all-volunteer, Seattle-based Burkitt’s Lymphoma Fund for Africa, remembers the nonprofit’s founder.
A financial consultant with a passion for community service, Sevy started BLFA after a trip to western Kenya in 2009 arranged by the global health organization PATH. She had gone to learn about malaria prevention, but while there, she encountered a hospital ward of children with rapidly growing, painful tumors in their jaws or abdomens. The tumors were caused by Burkitt lymphoma, the leading cause of pediatric cancer deaths in equatorial Africa. Yet this form of non-Hodgkin lymphoma is highly curable if treated in time with common chemotherapy — treatment that is out of reach for many in this poor and largely rural region.
Sevy later said that she had thought of her own son and how she would feel if he were on that ward. Within a few short months of returning to Seattle, she founded BLFA to fund programs — including one in collaboration with Fred Hutchinson Cancer Research Center — to diagnose and treat children with Burkitt lymphoma in East Africa.
Hewing to that mission has been up to Kussick and the rest of the board of directors since Sevy’s death in 2015 of liver disease at age 64.
It turns out that Sevy chose her board well.
“It’s a great mission because it’s a curable disease,” said Kussick, who became BLFA board president in spring 2015. “The cure rate in America is over 90 percent. What we’re trying to do is give these kids the same chance that our kids would have.”
As the associate medical director of PhenoPath, a physician-owned pathology practice and reference laboratory in Seattle, Kussick understands the urgency of that mission more than most.
“As a hematopathologist, I typically diagnose 10 or more blood-related cancers a day,” he said. “Of all the cancers that I diagnose, the most aggressive is Burkitt lymphoma. It’s legendary. Those tumors can double in size in as little as 24 hours.”
One of the first programs BFLA funded was the Burkitt Lymphoma Project, a joint initiative of Fred Hutch Global Oncology and the Uganda Cancer Institute, or UCI, started by Fred Hutch infectious disease physician and researcher Dr. Corey Casper. Because there are many reasons for not getting treatment in time or at all — including a lack of knowledge about a jaw tumor that’s often mistaken at first for a toothache — the project takes a holistic approach to getting children into care. Among its innovations are raising awareness of the cancer and its treatment; providing transportation subsidies for families who can ill afford a trip to the UCI in Kampala; assigning case managers to help families navigate an unfamiliar health care system; offering healthy daily meals for pediatric patients; and covering drugs that are ordinarily provided by the government during shortages.
One of the first people that Sevy recruited for the BLFA board was Ned Palmer, a retired municipal finance expert and a leader on numerous nonprofit boards. Still a member and treasurer of the board today, Palmer recalled that early grant.
“We issued a request for proposals in 2010. One of the [responses] was from the Hutch — making sure that patients had transportation and other support,” he said. “I am amazed and encouraged that we had a role in helping the Hutch do what it does so well.”
Palmer’s initial interest in East Africa was personal: A friend from his undergraduate days — so close that he was a member of Palmer’s wedding party — was from Kenya. Palmer had been planning a trip there in 2009 to visit this old friend when Sevy, whom he knew from their mutual work in finance, contacted him about her new passion.
“She came back [from Africa] with a burning desire to make a difference in treating these kids,” he said. “She was very persuasive. It kind of snowballed from there, in the best sense of the word.”
Today, due to the Burkitt Lymphoma Project’s comprehensive approach, just 8 percent of confirmed Burkitt lymphoma patients lose contact with treatment providers, compared with 32 percent before the project was implemented. One-year survival rates, once 30 to 40 percent, have risen to 51 percent. Data is now available to guide further improvements, and the project is sustained by other funding.
For Kussick, the force of nature called in 2013. By then, the Burkitt Lymphoma Project had been up and running for a year. Sevy knew that one of the gaps it had identified was difficulty getting rapid and reliable diagnoses. That was Kussick’s specialty.
At Sevy’s urging, he accompanied some BLFA board members and Seattle-area Rotarians on a reconnaissance trip to Uganda to assess pathologic practices and diagnostic expertise. The UCI-Hutch alliance had just broken ground for a state-of-the-art UCI-Fred Hutch Cancer Centre to house laboratories, outpatient clinics and training facilities. After that trip, Kussick joined the BFLA board, and with PhenoPath generously donating his time, he has become heavily involved in advising on how to improve diagnosis of Burkitt lymphoma at the Uganda facility and at clinics in western Kenya.
Previously, the type of diagnostic staining test used did not easily distinguish between Burkitt lymphoma and other common childhood cancers, hindering efforts to start patients on the right treatment. From the start of the UCI-Fred Hutch project, tumor samples from about half of the patients with suspected Burkitt lymphoma have been sent to two different pathology laboratories as a way to improve diagnostic accuracy. However, in practice, the two labs disagreed on diagnosis in more than a third of the cases that they reviewed.
Over the last year, the team introduced a limited immunohistochemistry panel of disease markers to more reliably diagnose the cancer. The Fred Hutch-UCI collaboration is working on establishing a histopathology lab in the now completed UCI-Fred Hutch Cancer Centre over the next three years that would be able to run a full panel of diagnostic biomarkers.
“It may be that the single biggest predictor of survival is whether you have the right diagnosis,” said Dr. Suzanne McGoldrick, the Seattle-based Burkitt Lymphoma Project manager.
Most recently, the BLFA made a new, $100,000 grant to the UCI-Fred Hutch program to help not just diagnose but to stage Burkitt lymphoma by adding additional tests, including CT scans, and assessing involvement of the cerebrospinal fluid and bone marrow. Knowing the stage, or extent of the disease spread, can help physicians make better treatment choices. The Uganda institute has a CT scanner but before now lacked the resources to pay for bone marrow biopsies, which require anesthesia and especially large needles. Kussick hopes to recruit pathologists to volunteer to review the results, which can be digitally transmitted.
The commitment inspired by the BLFA founder lives on.
“This was a true founder-driven organization. Miriam decided what she wanted to do, and she convinced us. She was the proverbial force of nature,” Kussick said. “We’ve got some traction. Fred Hutch is a great partner. For me, as a hematopathologist, it’s intellectually interesting. And this is a nice way to give back. For the $600 you can treat these kids for, we can give them a pretty full life.”
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Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.