Making a major impact in your country, improving the lives of countless people. Few ever have the opportunity. Dr. Nixon Niyonzima, a young Ugandan physician, is one such individual. In a country of 36 million people, he will soon be one of only a dozen practicing oncologists, waging war on a preventable form of cancer that is uniquely deadly for the African country.
Eleven years ago, Fred Hutchinson Cancer Research Center started a relationship with the Uganda Cancer Institute, aimed at helping the country fight the disease, where it kills over 20,000 people annually. Cancer is a global problem, but in Uganda, 60 percent of reported cancer cases are actually preventable. To respond, Fred Hutch launched an ongoing training program to create more Ugandan cancer specialists. To date, 12 have been trained. 11 have returned to the country, leaving Niyonzima as the sole physician still in Seattle.
For Niyonzima, this fight is personal. His first encounter with cancer was at eight years old, when his mother died from the disease. The Uganda Cancer Institute (UCI), armed with only one full-time oncologist until 2008, was once the sole place in Uganda and five surrounding countries where cancer patients could seek treatment. The emotional toll Niyonzima endured, watching his mother travel hundreds of miles for chemotherapy, planted the seed for him to pursue a medical career.
“I was thinking of actually doing infectious diseases, but when I completed medical school… my mentor at Duke was doing oncology,” he says. “He encouraged me to join [the Uganda Cancer Institute] and do research projects there.”
The heart of his research centers on Burkitt’s lymphoma — most common in children, and the first form of cancer found to be caused by a virus. The disease infects an estimated 600 Ugandans a year. It's far more rare in the U.S., but the biggest difference between this country and Uganda is the survival rate. Here, complete remission hovers around 90 percent. Before the Hutch started its work in Uganda, 70 percent of children died within one year of their diagnosis. Currently the survival rate is 55 percent a year after the disease is contracted.
Of upmost priority in the Hutch-UCI partnership is increasing the number of oncologists, an effort of which Niyonzima is a central part. He is three years into his five-year doctoral program at Fred Hutch, studying cancer at a molecular level. Between semesters every summer, he returns home. But he anticipates the day he can live in Uganda once more, meeting with patients, running research laboratories, and mentoring other physicians and medical staff in his country.
Even with his help, the ranks Niyonzima will join are overwhelmed. Capacity for these doctors, as well as the patients that need their help, is limited. Until this year, the infrastructure to change this didn't exist. This past May, Fred Hutch and UCI opened a state-of-the-art, three-story, 28,000 square-foot building to expand research, medical staff training and outpatient facilities of the existing UCI. With additional help from the Ugandan government, there will be more healthcare workers and proper laboratory equipment to study how infections evolve into cancer, and develop more effective treatments. Currently, there are over 20 ongoing research projects that are housed within the building.
“Being at the cutting edge of research is very exciting in its own right,” Niyonzima said in an interview. “It opens people to new opportunities and ideas. It’s exciting to be able to discover something. Also to offer hope to your patients — research does that.”
The reasons behind the country's cancer fatality rate – among the highest in the world – comes down to a number of reasons. Cancer is little understood in Uganda — some tribal languages don’t have a word for it. Many believe that their diseases will either go away on their own, or nothing can be done.
For instance, children with Burkitt’s lymphoma characteristically develop swellings around their jaw or other facial bone. And after just one cycle of treatment, these swellings and tumors shrink tremendously. Many Ugandan patients thus believe they’re cured, and forgo follow-up hospital visits. But a patient actually needs six treatment cycles to put their body into long-term remission, or else there’s a good chance for relapse of the disease.
“When working [at UCI], one of the things that really touched me was that we weren’t able to diagnose patients accurately most of the time,” Niyonzima said. “I wanted to improve the diagnoses at the UCI and make things better.”
A Ugandan physician encounters three main challenges to correctly diagnose a type of cancer: lack of equipment, lack of trained personnel, and cost. Many times tests are done in private labs or tissue samples are sent to South Africa, India, and even South Lake Union. By allowing doctors to keep tests in-country, Niyonzima is hopeful the new facility will make things more efficient and affordable.
The affordability of getting care is a major issue in Uganda. Half of the patients the UCI sees make roughly $200 a year, while 30 percent make no money at all. As Niyonzima’s own mother had to endure over 20 years ago, many patients are forced to travel over 200 miles by bus or van until they can see a doctor. Many of them can’t afford these transportation costs, which constitute of a bus ticket that ranges from $10-$30 depending on the length of the trip.
Prior to the partnership, the Ugandan government would cover the costs for doctor visits, hospital stays, and the first round of chemotherapy. But for a treatment plan of six courses, the costs to the patient can be upwards of several hundred dollars.
Additional out-of-pocket costs are incurred when patients need laboratory tests, medicine, supportive care, and food and laundry services that can accompany an overnight hospital stay. So when patients do make it through the doors, tumor conditions are severe enough to warrant the inflicted costs and trip. Unfortunately by that point, 90 percent of those cases are too advanced for care.
In partnership with the National Cancer Institute and the Seattle-based Burkitt’s Lymphoma Fund for Africa and the Martin-Fabert Foundation, Fred Hutch’s work in Uganda now allows patients to return to UCI every two weeks, as needed, for free. The UCI also set up satellite clinics in different regions of the country to reduce the distance that people have to travel. And on the prevention side of things, Fred Hutch is exploring potential vaccine candidates for Burkitt’s lymphoma, much how the HPV vaccine works against future cervical cancer infections.
Fred Hutch’s aid will certainly raise the bar for patient care in Uganda, but as Niyonzima warns, it’s not without its share of ongoing challenges. The number of oncologists have increased, but it’s still not enough to effectively tackle the overwhelming numbers of patients at the door in a short amount of time. 20,000 patients enter UCI’s doors annually, and a doctor may treat up to 50 patients a day. “You still have patients waiting the whole day, sometimes into the next day, to see an oncologist,” he said. “You may get seen at 6 p.m. when you came in at 6 a.m. But at least you’ll get seen now.”
Homesickness pulls Niyonzima back to Uganda. When he returns, the majority of his time will be spent heading research teams, and bridging new diagnostic developments from the bench to bedside.
“For me, the most memorable patients are the children. If they’re not in pain, they’re playing with you, laughing with you, running around you… but the sad part about treating cancer is that eventually you lose some.
“But you have those very few that survive, and they remember you. So when I go back to Uganda, I always meet some of my former patients and it actually turns into a joyous occasion.”
All photos courtesy of Fred Hutchinson Cancer Research Center
