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.
As is the case for so many children in rural Uganda, the odds appeared to be stacked against 6-year-old Naula Kamondi getting the treatment she needed for Burkitt lymphoma, the most common cause of childhood cancer deaths in equatorial Africa. Yet there she was at the Uganda Cancer Institute, playing with her grandmother’s bangle bracelets after two rounds of chemotherapy had begun to shrink large tumors on both sides of her jaw.
Naula lives in an eastern Uganda village about 130 miles from Kampala, where Uganda’s only dedicated cancer hospital, is located. Distance and transportation costs in a country where the per capita income is about $500 a year are two of the main barriers to treatment. Another is a lack of awareness and knowledge about cancer, sometimes accompanied by a belief that lumps and swellings are caused by witchcraft.
Then there is the widespread reliance on traditional medicine, all aside from black magic. Even if patients also seek conventional care, waiting to see if herbal remedies work can lead to dangerous delays in treating fast-growing cancers, said Allen Naamala Mayanja, the head nurse at the UCI.
“The cancer keeps advancing,” she added.
The World Health Organization estimates that 60 percent of Ugandans seek out traditional healers as their first line of health care. In part that’s due to customs passed down through generations, but it’s also a matter of access. According to the World Bank, Uganda has one traditional healer for every 290 people. That compares with one Western-trained medical practitioner for every 10,000 people in urban areas and 50,000 people in remote regions such as Pallisa, where Naula lives in a family compound with her father, his two wives and five sisters and brothers.
In fact, Naula didn’t have to go far at all to find a traditional healer: Her father, Richard Kedi, is one.
Despite his profession, Kedi never considered treating his daughter himself. He specializes in joint pain, women’s abdominal pain, business difficulties and exorcisms, he said through an interpreter. For other problems, Kedi said that he often consults a Western-trained doctor that he knows or advises clients to go to a hospital.
So when both sides of Naula’s jaw started swelling in June and two tooth extractions didn’t help, Kedi took her to a hospital in the nearby town of Mbale. When doctors there suggested that Naula’s swelling might be cancer, he immediately brought the child to Kampala by taxi van.
His response was unusual. Even among Ugandans who have heard of cancer, a diagnosis is often seen as a death sentence. Such a belief can become self-fulfilling if it causes patients to forgo treatment.
Kedi was aware of cancer, although his family had had no personal experience with it. Specifically, he had heard that it was incurable and that the only thing to do was to bring the patient home to die. But when it came to his daughter, abandoning hope was unacceptable.
“In my stubbornness, I decided to bring the child to the hospital,” he said in Luganda, as Naula’s UCI case manager translated. “If she were to die, she would at least die in a hospital.”
Kedi and his daughter arrived in Kampala in early July. A biopsy confirmed that Naula had Burkitt lymphoma and she was admitted to the Burkitt Lymphoma Project, a joint initiative of the UCI and Fred Hutchinson Cancer Research Center. She started chemotherapy immediately.
Kedi’s quick response was crucial. A cancer of the immune system first identified in Uganda in 1958, Burkitt lymphoma is one of the fastest growing tumors. It can kill so quickly that a diagnosis is treated as an emergency, said Dr. Innocent Mutyaba, Burkitt Lymphoma Project coordinator.
Burkitt lymphoma occurs in other countries, including Latin America and, though rare, the United States, but it is most common in equatorial Africa. Dr. Denis Burkitt, the Irish surgeon and missionary who first described the cancer and helped develop one of the world’s first combination chemotherapies to treat it, mapped the cancer’s distribution and found it in areas with warm temperatures, high rainfall and high malaria rates.
In 1964, British researcher Dr. Anthony Epstein identified a new herpes virus, now called Epstein-Barr, in tumor samples provided by Burkitt. The Epstein-Barr virus has since been associated with other cancers as well, including nasopharyngeal carcinoma, a common cancer in Southeast Asia. In the United States, it is best known for causing mononucleosis.
There is now growing recognition that infections are associated with nearly one-quarter of cancer cases around the world, including cervical, liver and stomach cancers. Researchers are still seeking to understand why a virus leads to cancer in some people and in some parts of the world but not in others. For Burkitt lymphoma, researchers are investigating whether the age at which one is infected and co-infections such as malaria play roles.
In addition to studying Burkitt lymphoma, the UCI-Fred Hutch partnership has since 2012 provided a systematic, holistic treatment plan that has so far helped raise survival rates from about 30-40 percent to 64 percent. (The U.S. survival rate is around 90 percent.) The cancer is treatable with chemotherapy every two weeks for 12 weeks, but delays of even a few weeks in seeking care mean that many patients aren’t seen until the disease is in its late stages. So the project’s innovations include raising awareness through outreach to regional clinics and dental practitioners, speeding diagnosis and assigning case managers to help families navigate care. Fred Hutch is also helping train more cancer specialists to practice in Uganda.
Mariam Ndagire, a UCI nurse and Naula’s case manager, believes that these and other project efforts, including free treatment and transportation subsidies, are paying off. Her biggest frustration is families who bring their children in in time, then, after the first few chemo treatments dramatically shrink the tumor, don’t return for the rest of the regimen.
“The next time you see the child, the tumor is back, and the prognosis is worse,” she said.
But judging from what she’s seen of Naula’s family, she doesn’t think that will happen.
Kedi’s mother, Naheni Teopista, came from the town of Jinja, where she works as a fish seller, to help care for her granddaughter during the two weeks Naula spent at the UCI. She will keep Naula for the next few months in Jinja, which is closer to Kampala, to more easily return for the full six out-patient treatments.
Described by her father as a “very, very social child,” Naula, dressed in a bright T-shirt and long blue skirt, easily charmed her grandmother as well as a visiting writer and photographer.
“Now that she’s a bit better and not in pain, she’s asking about her siblings and wanting to play with all the children on the ward,” Kedi said. “We are very hopeful and very, very happy.”
Still, before Naula was discharged on July 18, Kedi had questions. He wanted to know what caused the cancer and whether hygiene played any role. He had a house with a toilet, he said—rare among mud-walled and thatched-roof homesteads—and a rack for washing dishes, and yet still his child got cancer.
In other words, like parents everywhere, he wanted to know if he’d done anything wrong.
In fact, he’d done everything right.
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Funding for the Burkitt Lymphoma Project comes from the National Cancer Institute, the Burkitt’s Lymphoma Fund for Africa, the Martin-Fabert Foundation and individual donors.
Robert Hood is a staff photographer at Fred Hutchinson Cancer Research Center. A longtime photojournalist, he's also worked at NBC News digital and msnbc.com. Reach him at firstname.lastname@example.org.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research 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.