The Children of Bugando by Jimmy Maiarana

Bugando Medical Center sits on a hill overlooking the southern coast of Lake Victoria- a 26,000 square mile lake that separates Tanzania, Kenya, and Uganda. On the surface, the lake is breathtaking. Small islands are snow flaked off the shores, massive rocks sit artistically on top of one another, and at sunset the orange and yellows look like they come from a piece by Monet. But there is a catch- you can’t go in the water because it is filled with crocodiles and Schistosomiasis. As you ascend off the water, you enter Mwanza, with a population of a little less than 3 million people. Bugando is the major hospital for Mwanza, and unlike Rome, all roads do not lead to Bugando. Only one does. And on that road, every time you want to go to the hospital, there are open aired shops on both sides of the street selling caskets. Such a high percentage of people who enter the hospital, never return. One population who historically hasn’t had a great chance of leaving Bugando is pediatric oncology patients. And that is where this story begins.

In 1948 Sidney Farber became the father of chemotherapy when he used folic acid antagonists to inhibit the growth of leukemia cells in a hospital in Boston. While his patients all ended up succumbing to their disease, he revolutionized the field of oncology and since then chemotherapy has become the standard of care across most childhood tumors. I spent two years in an immunotherapy lab at the hospital that now bears his name- Dana Farber Cancer Institute – and through some conversations there (and with peds onc docs at Hasbro Children’s) I kept hearing the statistic of 90%. If you are a child in America born with cancer in 2017, your chances of survival are around 90%. This is a medical miracle. 50 years ago, this disease was a death sentence regardless of where you lived. Now there is hope… if you live in a high-income country.  However, like many statistics, life unfortunately is all about location. And if you’re born in a low or middle-income country that statistic drops to around 20%. 3 years ago, Dr. K from Duke headed over to work at Bugando and in doing so, became one of only two trained pediatric oncologists in the entire country of Tanzania. She covers the west coast; her friend covers the east. When she arrived, survival rates for pediatric patients mimicked the WHO’s statistic of 20%. In three years, she has created a cancer registry, introduced a local patient navigator to follow up with families, started an NGO that pays for therapy/labs if a family cannot afford it, and runs a hostel for the families to stay while the child is receiving treatment. With all of that, survival rates have increased from 20 to 40% in 3 short years. This is amazing in such a resource limited setting. But so much more needs to (and can be) done.

Pediatric cancers are different from adult. Survival outcomes are very favorable given two conditions. Patients must be diagnosed quickly and correctly, and treatment course must be completed.  Given these two conditions, the underlying cause of unfavorable survival outcomes for children in low income countries can be broken into two sides- patient factors and provider factors. Dr. K has erased many of the patient factors in her 3 years at Bugando. She has removed the financial barrier that led to patient abandonment and introduced a patient navigator to ensure that families return. I, a biased first year med student, entered my summer thinking that a majority of the issue rest upon the families. But, like most situations, I was quickly shown to be wrong. It doesn’t matter if you’re rich or poor, if you live in the quintessential northeast town like Providence, or along the shores of Lake Victoria on the northwest border of Tanzania. If your child has cancer, you will do whatever it takes to help them. With much of these barriers to care for the families removed, the biggest hindrance to survival now lies on the providers.

Take, for example, Nelson. Nelson is a 4-year-old boy who showed up on the inpatient floor with a mass the size of a newborn’s head arising along the left maxilla. When he arrived, the outer edge of the mass was necrotic and infected. It was so large that he couldn’t open his left eye, breathe out of his left nostril, or eat out of his mouth. When we took a history, we found that the mass had been growing for 4 weeks, and after that his mother took him to a local doctor who thought it was an abscess. Without obtaining a biopsy, they scheduled a surgery to remove the abscess. Not too long after, the mass grew back and was infected as well. With one quick look, Dr. K could say that this was Burkitt lymphoma, a highly aggressive B cell lymphoma that is strongly associated with regions heavily decimated by malaria and EBV. Dr. K wanted a biopsy to confirm the diagnosis before starting treatment. To cut down on time before treatment could begin, she also ordered the required tests to make sure the child was safe for chemo- LFTs, Uric Acid, a CBC. And then we waited….and waited…. And waited. “Waiting” in the United States for a patient who needs these tests could be a few hours. By 12 hours, someone is getting yelled at if the tests aren’t back. We waited for days. And when a biopsy wouldn’t come back we had to go chase them down. Twice, the labs were uploaded to a patient with a different medical record but similar name. Eventually, 4 days later, Nelson was diagnosed with Burkitt lymphoma based on biopsy results and we started him on a CMV (cyclophosphamide, methotrexate, vincristine) protocol, one that works very well. We would periodically return to check on Nelson and his mother, speaking what broken Swahili we could manage. Within a week the mass on his face had shrunk 60%, enough for him to see, breathe, and eat with the left side of his face. Another cycle and the tumor was expected to be gone.

While this can be labelled a success story, there are multiple system failures that, if addressed, could dramatically increase survival rates in Tanzania. The first is the surgical resection of an expected abscess without obtaining a biopsy. This delayed treatment by at least 4 weeks. The second is the delay from arrival to diagnosis and from diagnosis to treatment. A major hindrance to this is in the lack of expertise in the realm of pediatric oncology. The country has only 2 peds oncologists-neither are Tanzanian. If a doctor wants to specialize they must pay for the education. Pediatrics, and peds onc, are not lucrative enough to attract doctors. With that in mind, general practitioners must be trained or educated on some of the hallmarks of pediatric cancers. Part of the research I was conducting while in Mwanza was to survey providers and families to see if a mobile health app would be beneficial. We think it will be, and are aiming to use it to standardize treatment from providers, disseminate educational information to both providers and patients, and to update families of upcoming treatment.

In the US, there are agreed upon standards for workup, diagnosis, and treatment for every type of tumor. We don’t have that in Mwanza… yet. But we aim to. After spending a month in Africa, I think education is one of the two best assets we have as American physicians. Fellow classmate Josie Valcin says it a lot more eloquently than I ever could. After spending a day educating Haitians on some of the most common causes of diarrhea in infants, she wrote, “This is the work that I am most passionate about because I truly believe that if Haiti is to move forward, all of the knowledge and power has to be in the hands of the Haitians who live there each and every day. Remember, all of the knowledge and research you bring to a country is no good if you leave with it. I’m confident that by leaving the knowledge in the hands of the people, they’ll be able to do so much more than I could have ever done.” As we move forward in trying to cure the world of pediatric cancer deaths, our next step must be to leverage our academic assets and freely disseminate this education to doctors, health systems, and families in low income countries.

[*If any first years would like more information about potential projects for next summer, please email me at james_maiarana@brown.edu*]

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