Many of us training in the United States have encountered patients and their families from resource-limited regions of the world-families who have uprooted themselves for the chance to save the lives of their children diagnosed with cancer.
Many of us training in the United States have encountered patients and their families from resource-limited regions of the world—families who have uprooted themselves for the chance to save the lives of their children diagnosed with cancer. This will not come as a surprise when you review the cancer survival rates worldwide. The United States’ current 5-year overall survival rate for childhood cancers is 80%. Compare this with 30% for childhood cancers in Colombia, 20% for acute lymphoblastic leukemia (ALL) in Malawi, and close to 0% for most childhood cancers in Ethiopia. An estimated 100,000 children worldwide who die without treatment do so without access to palliative care.
It is estimated that 70% of the children with cancer in developing nations with cancer receive substandard care, if any care at all. The incidence and mortality of cancer in the United States has declined dramatically over the past 50 years because of increased awareness, prevention, earlier detection, and increasingly effective treatment protocols. After reading numbers like these in developing countries, it behooves us as future pediatric hematologists/oncologists to help eliminate this disparity, especially since many childhood cancers are highly curable. So how can we make the biggest difference? Sharing our knowledge effectively with the rest of the world is a great start.
Bridging the Gap
Twinning programs, developed by the St. Jude’s Children Research Hospital, have become a successful model to help bridge this gap. Twinning partners high-income countries with resource-limited institutions to share information, organizational skills, and technology. One example is the Instituto Materno Infantil de Pernambuco, a St. Jude’s partner hospital in Recife, Brazil, which showed dramatic improvements after twinning with St. Jude’s by its markedly reduced rates of abandonment of treatment, relapse, and death due to toxic effects of treatment.
Another outstanding example of well-appointed funds exists in Egypt. Through a unique fund-raising strategy via the Association of Friends of (Egypt’s) National Cancer Institute, Egypt’s Children’s Cancer Hospital 57357 (http:// beta.57357.com) opened in 2007 in El-Saida Zenab. This very modern facility has been able to change Egypt’s cancer survival rates from less than 40% to 75% to 80%.
The Cure4Kids website is a tremendous resource for oncologists all over the world (www.cure4kids.org). Many other institutions have built international initiatives, including Baylor College of Medicine, Dana Farber Cancer Institute, Children’s Hospital Los Angeles, and Georgetown University, among others.
A well-established international organization is the International Network for Cancer Treatment and Research (INCTR; www.inctr.org), which is headquartered in Brussels, Belgium, and has branches in Brazil, Canada, Egypt, France, Nepal, Cameroon, India, Tanzania, the United Kingdom, and the United States. Among its many tasks, INCTR has successfully devised lower-cost protocols for ALL and lymphoma; provided education and training for cancer treatments; and supplied supportive care, psychosocial support, and palliative care.
The International Society of Paediatric Oncology (SIOP) holds annual conferences worldwide and is an excellent medium for sharing information. The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) spans 5 continents and follows in this same vein, as does the World Child Cancer organization (www.worldchildcancer.org). Other outstanding organizations include the Asociación Hematología y Oncología Pediátrica Centro Americana (AHOPCA) and the Union for International Cancer Control (UICC).
In June 2011, Princess Dina Mired, director general of the King Hussein Cancer Foundation, delivered a keynote speech at the United Nations intended to bring awareness to noncommunicable diseases that include cancer, heart disease, diabetes, and chronic respiratory illnesses. These 4 categories of illness account for more deaths worldwide than all other causes combined. This is an example of how cancers, including pediatric cancer, are gaining recognition and how the geographic inequalities in treatment are beginning to be addressed.
On the Ground in Malawi
A close friend of mine, Nader Kim El- Mallawany, MD, is a recent pediatric hematology/oncology graduate who has been working for the past 2 years in Malawi, a country in southeast Africa that has been hit hard by the AIDS epidemic. His work there has primarily centered on patients who are HIV-positive and have Kaposi sarcoma (KS)—specifically, trying to improve the diagnostic and therapeutic approaches for these patients.
“We have about 20 to 25 children diagnosed with KS per year in our clinic, and this is probably an underrepresentation of the true numbers of children with KS in the surrounding areas, because very few clinicians are aware of the nuances of presentation of KS in children,” said El-Mallawany.
He also supports the pediatric oncology ward in the central hospital. “The most common diagnosis is Burkitt lymphoma, but certainly children present with a wide array of different diseases, including leukemia, solid tumors, Hodgkin disease, and other non-Hodgkin lymphomas,” he said.
“Because there is a paucity of subspecialists in this setting, teaching is one of the most important tools we can provide,” El-Mallawany noted. “We can significantly improve outcomes for common diagnoses by providing fundamental tools and carefully constructed protocols that are sensitive to the available resources and practical limitations that clinicians encounter.”
He finds his work in Malawi “rewarding, more so than any other work I have ever done.” He said, “Small and simple interventions can have very positive effects for the patients and their families. Yet at the same time, the work can be frustrating when you consider the limitations imposed upon us by the severe shortage of resources. Therefore, with time, you come to figure out how to bridge the gap between these 2 extremes and try to provide the most effective therapeutic approach for the patients.”
El-Mallawany encourages international outreach because “there are very few subspecialists in the region bringing knowledge and teaching to local clinicians. Our colleagues throughout the world are trying their best to overcome the challenging situations that they struggle with on a daily basis, and empowering them with the sustainable tools to carry on treating pediatric cancers will be valuable for years to come.”
So how did he make this a reality? “Ultimately, it was simply a matter of deciding to make the move and finding the right opportunity,” he stated. He said that he made this decision “understanding that in a field like oncology, we cannot expect to go somewhere that is lacking so many resources and try to deliver the exact same approach as that which we are used to in the Western world.” El- Mallawany continued, “Yet nonetheless, we can try to effect systematic changes that aim to improve the outcomes and opportunities for individual children.”
Fellows who travel to other countries to help should not expect to work only in their field. El-Mallawany noted that they will need to “be aware of the context in which healthcare programs are trying to deal with diseases like cancer. When millions of children around the world still die of easily curable illnesses like malaria, diarrhea, pneumonia, measles, tuberculosis, malnutrition, etc, we must understand that our approach as pediatricians and as hematologist/oncologists should be driven by a goal to improve child health overall.”