Jacinta, an eight-year-old girl from southwestern Kenya, started complaining of a toothache three months ago. After the tooth was pulled, the swelling did not stop. Jacinta was taken to a health center where the clinical officer diagnosed a bacterial infection and prescribed antibiotics. Following treatment, the swelling in her jaw only continued to grow rapidly. Two months later Jacinta’s mother, a single mother with two other children and no reliable income, managed to take her daughter to a district hospital. There, the tumor was properly diagnosed as Burkitt’s lymphoma, and because no treatment was available at the district level, she was referred to the Provincial General Hospital of Nyanza, in Kisumu.
Burkitt’s lymphoma is an aggressive cancer that accounts for more than half of all childhood cancers in equatorial Africa. It is a rare disease everywhere else. The disease is related to the Epstein-Barr virus (EBV), the first virus to be associated with human cancer, and current research has suggested that malaria may also play a role in the development of Burkitt’s lymphoma. Research is underway around the shore of Lake Victoria in East Africa, where Jacinta lives and where the burden of malaria and Burkitt’s lymphoma is high.
With limited resources at home, Jacinta never made it to the oncology ward at the Provincial Hospital in Kisumu. Instead, someone in her village told Jacinta’s mother about a place called Shirati, across the border in Tanzania, where her daughter might be able to get help. Despite any assurances that making the journey would yield any results, she decided to go, leaving her other two young children at home in the care of a relative.
When Jacinta and her mother arrived at Shirati they were directed to Sota, a small village down the road, where the Shirati Education and Development Foundation (SHED) is located. A new partner, SHED had just received its first container of medical supplies from Direct Relief when we visited. Under the guidance of Dr. Esther Kawira, a resident of Shirati for over 25 years and a regional expert in Burkitt’s lymphoma, SHED has made available specialized chemotherapy treatment at the small health dispensary Dr. Kawira runs.
The treatment regimen for Burkitt’s lymphoma is six doses of chemotherapy given every two weeks, which takes at least a month and a half for care. This is long time to stay under in-patient care, especially if it means lost wages for the parent who accompanies the child. Also, the cost of travel back and forth to the clinic is often prohibitive. Once they leave, patients may never come back, which can lead to a relapse requiring more expensive treatment that is even more difficult to source. At SHED Foundation, the chemotherapy is donated and can be administered at no charge to the patient. This is unusual in this region, where the patient must purchase the drugs and bring them to the hospital (which, at several hundred dollars a course, almost never happens); the hospital has to cover the bill, which is a huge challenge for resource-strapped facilities; or, most likely, the patient goes without treatment.
With adequate therapy, Burkitt’s lymphoma has a high cure rate. In developed countries, 90 percent of children with the disease are cured. For countries in sub-Saharan Africa, the disease has been a low priority, given the high prevalence of other illnesses that affect more children and are cheaper to treat. With limited disease-management capacity and treatment available, the mortality rate for Burkitt’s lymphoma in Africa remains high.
When a child is put on treatment, as Jacinta was at SHED Foundation, the improvement is remarkable, even after just one course of chemotherapy. As quickly as the tumor grows, it shrinks away faster. This almost instant visible change which occurs in many cases is incredibly hopeful for the child, their family, and the healthcare providers overseeing their care. During our visit at SHED, Dr. Kawira asked us to take a photo of Jacinta, which we left with her when we departed. She in turn sent us a photo that a group of medical students had taken just two weeks before, when Jacinta first arrived at the clinic. The transformation is incredible. Jacinta’s mother said to Dr. Kawira when she arrived, “She used to be beautiful.” Dr. Kawira had replied, “She will be beautiful again.”