On International Childhood Cancer Day, it’s important to remember that global support, research, and treatment are vital to ensuring that children in developing countries have the same chance at survival as their peers in the U.S. Physicians such as Dr. Leslie Lehmann from Dana-Farber/Boston Children’s Cancer and Blood Disorders Center travel all over the world to deliver expert, curative care to young patients with cancer. Here is her story.
Rwanda is a tiny country in central Africa with much beauty but few resources. The genocide in 1994 that killed nearly a million people also devastated the health care system. Many people do not receive basic health care services and cancer care was nonexistent. It was impossible to even tell how common cancer was – people would die from a mass, or from bleeding, or infection without ever having a diagnosis.
The country has over 11 million people with not a single physician trained in caring for people with cancer. It’s a very sad situation.
This is beginning to change a bit. Through the Partners in Health (PIH) organization, I became part of a U.S.– Rwandan team led by Sara Stulac, PIH’s director of pediatrics, assembled at the Rwinkwavu hospital with the goal of providing consistent quality care to children with cancer. Sara had lived in Rwanda working at this rural PIH- sponsored hospital for six years. I went to Rwanda with Kathleen Houlahan, a pediatric oncology nurse and nurse director of the Jimmy Fund Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and Dr. Larry Shulman, medical oncologist and chief medical officer of Dana-Farber, who is Senior Oncology Adviser for PIH and leads Dana-Farber/Brigham and Women’s Cancer Center efforts in Rwanda.
After spending time on the pediatric wards and talking to the medical team there we came up with a “twinning” strategy for patients with a suspected or proven cancer diagnosis. At Rwinkwavu Hospital, there are American-trained pediatricians who work with and mentor Rwandan-trained generalists and nursing staff. This “on the ground” team is supervised through weekly phone calls from a U.S-based pediatric oncologist – myself. We review all details of the patient’s care, from chemotherapy doses to supportive care for nausea. The twinning team approach leverages in-country medical and nursing resources and adds the long-distance supervision and expertise of Dana-Farber/Boston Children’s specialists in pediatric cancers.
So far, we’ve had some success with this approach; although the outcomes aren’t as good as they would be in Boston, this approach has cured some children using local resources. Last December, we gave a presentation about 10 of the children at the American Society of Hematology’s annual meeting. Five patients are long term survivors, two are in remission and currently receiving chemotherapy, and three died.
In Boston, we’d expect an 80 percent cure rate, so we want to move closer to that goal in Rwanda. Many of the hurdles are logistical: Some kids went too long between courses of treatment because it was hard for them to get to the hospital. Others weren’t diagnosed early enough for optimal outcomes. Some died of infections.
We do have a wonderful success story of a 13-year-old boy, Sibo Tuyishimire, whom we treated at Rwinkwavu for Hodgkin lymphoma. He’s from a farming village in Rwanda. After he was treated, the cancer came back, but we managed to fly him to Boston last fall for a bone marrow transplant at Children’s Hospital Boston. He stayed with a family in Concord while he was here,and learned to love American food and music. Now he’s back in Rwanda and doing well.
Hear more about Sibo, and the state of cancer care in Rwanda, in this WBUR story.
One of the Rwandan physicians we work with, Alain Uwumugambi, is interested in blood cancers but has no specialized training in this area. Thanks to support from the American Society of Hematology, he came to DF/CHCC in December to observe hospital rounds and to attend the annual hematology meeting. In May he’s coming back for a month to study adult and pediatric hematology and pathology. It will help him manage a wide variety of hematology problems in a country with no hematologists as well as share his specialty knowledge with other physicians.
Also in April, we’re having a country-wide cancer training session in Rwanda. We’ll be emphasizing earlier diagnosis and writing standardized protocols for the common treatable diseases.
Although it’s only a beginning, I’m gratified that our program is making a difference. Not just for the children we treat – but for the whole country. People all over Rwanda are hearing that cancer isn’t a death sentence and that cure is possible. As patients and health care providers hear these stories, we hope that they will seek treatment earlier and that country’s ability to provide care for these patients will continue to grow.