In a special report, U.S. News & World Report traveled to four parts of the world to examine the barriers to treating children with cancer, and successful strategies that are offering pathways for hope.
Although pediatric cancers are rare, treatment increases five-year survival from 0% to more than 80%. Childhood cancer survivors have years of productive life ahead of them. Yet childhood cancer is not a top health priority in many countries, especially those with scarce resources and competing health problems. U.S. News correspondents journeyed to countries where health workers are defying these norms and saving thousands of young lives.
— U.S. News staff reporter Gaby Galvin and photojournalist Jessica Pons traveled to Yakima, Washington, where they spoke with farmworkers and their children who are battling cancer, as well as with local health care workers reaching out to the families. They also traveled to Seattle, a leading center in the United States for cancer treatment, where people at Seattle Children’s Hospital are helping migrant families navigate the U.S. health care system.
— Hong Kong-based journalist Ting Shi reports from Shanghai, a locus of a new national effort in China to reverse years of neglect and provide care for kids with cancer based on new evidence that treating childhood cancer saves lives and is cost effective. Shi also reports from Hong Kong, where a recently opened children’s hospital is providing centralized care for kids with cancer and other afflictions. Photographer Yue Wu illustrated both stories.
— Prue Clarke, a veteran journalist who for years has reported from across sub-Saharan Africa, files dispatches from both Liberia and Rwanda to show the scale of the challenge to improve cancer care in developing countries that have few resources, as well as the inspiring possibilities to dramatically improve treatment. Photojournalist Carielle Doe chronicled the cancer-care landscape in Liberia, while photographer Jacques Nkinzingabo illustrated the amazing work being done in Rwanda.
— Beirut-based writer Abby Sewell reports from both Lebanon and Jordan on the efforts to treat young refugees who have fled war only to be faced with the challenge of battling cancer. Photojournalist Natalie Naccache illustrated the work being done in Lebanon and photographer Nadia Bseiso chronicled treatment efforts in Jordan.
The decision to undertake this project comes from new research that challenges long-held assumptions, work that has the potential to reshape policy and improve childhood cancer care.
For years, perhaps decades, medical experts, health care researchers and government policymakers around the world have considered childhood cancer through the lens of a firmly held set of beliefs. Chief among those is the conviction that the number of children fighting cancer, tragic as it may be, is smaller than other illnesses striking youth. Health care experts have also believed that the burden cancer imposes on children is a fraction of what adults face.
Those beliefs were wrong.
The number of children suffering from cancer around the world — including in wealthy countries such as the United States — is far greater than previously believed. The research, carried out by Drs. Lisa Force, Nickhill Bhakta and Christina Fitzmaurice and published in Lancet Oncology in July, estimates that more than 400,000 new cases of children with cancer annually occur around the world, a figure roughly twice the amount of cases that are diagnosed.
Their research also quantifies for the first time the global scale of the burden cancer imposes on children, their families and even governments. They do so by calculating the number of years children lose because of ill health, disability or early death. That measure, called disability-adjusted life-years (DALYs), helps public health care experts assess the health of countries’ populations and in turn develop strategies to treat patients.
Force and Bhakta, who work at St. Jude Children’s Research Hospital in Memphis, Tennessee, and Fitzmaurice, who works at the University of Washington’s Institute for Health Metrics and Evaluation in Seattle, estimate that childhood cancer resulted in 11.5 million DALYs around the world in 2017, ranking second among all cancers, after those of the lung and respiratory tract, and fifth among other childhood diseases.
But they also say that figure is likely an underestimation because of a variety of factors, such as a lack of data and the use of diagnosis techniques that work well for adults but not for children.
Their research also shows that the burden of cancer disproportionately affects people in poor and middle-income countries, where resources to treat the disease are scarce. This information is especially powerful in those settings, Bhakta says. “Though it pains me as a physician to think in these terms, you have to choose which interventions are going to carry the biggest bang for the buck.”
Health care officials in China found the evidence so compelling that it launched a national childhood cancer program from scratch. “China is an incredible success story,” Bhakta says. “You’re talking about thousands of children who are getting treatment who didn’t before.”
These efforts are the latest expression of an international movement to improve childhood cancer treatment in all countries, especially in the developing world where local resources and knowledge are inadequate for the challenge. Individuals, organizations, institutions and governments are increasingly working together to establish global networks to improve diagnosis and care.
U.S. News’ reporting shows both similar and unique challenges as health care communities in countries tackle improving childhood cancer treatment. In the United States, China, Africa and the Middle East, many families lack basic literacy about cancer: what it is, its deadly threat and how to recognize it.
Just reaching treatment poses immense challenges. In Lebanon, for example, refugee families must pass through a gauntlet of checkpoints to travel from their assigned camps to clinics and hospitals in the country’s cities. In China, families living in rural provinces know that the best cancer care is available in a very few cities, such as Beijing, Shanghai and Guangzhou — and that it will cost them much more to be treated there.
In the Yakima Valley, rural parents face painful choices if their children are sick. For some, deciding to seek medical help can carry the risk of deportation, given the current political climate in the U.S. over undocumented workers. Once their child is diagnosed with cancer, farmworker parents must decide whether to give up badly needed cash earned from working in the agricultural fields to travel to Seattle for the best care, and even risk losing their job.
Paying for cancer treatment is a major hurdle in all countries. As Prue Clarke reports, “In Africa, where few people have access to affordable health care, children with cancer face a terrifying lottery, where survival depends on luck: either you find a doctor and someone able to pay for treatment, or you die.”
Maintaining follow-up care is also a challenge. Migrant workers in the U.S. must move from state to state to find work, a life that makes maintaining regular treatments for their children extremely difficult.
Yet progress is being made. In Rwanda, government officials are working with local health care workers and visiting international experts to develop a health care system that is being seen as a regional model that can offer a possible blueprint for poor, developing countries. In Lebanon and Jordan, local doctors, international organizations and civil society are working together to reach and treat young refugees, an approach that may work for others living near conflict zones.
In China, years of work to improve a database of children with cancer is paying off, increasing the number of young patients diagnosed and treated. And in Washington’s Yakima Valley, local care organizations and clinics are working with cancer treatment centers in Seattle and elsewhere to provide care.
The common theme for successfully treating childhood cancer is collaboration at the local, regional and international level. As Dr. Douglas Lowy, acting director of the U.S. National Cancer Institute, writes for U.S. News, collaboration with national and international partners is key to improving population-based cancer registries, particularly in low- and middle-income countries.
And as Dr. Carlos Rodriguez-Galindo writes in a commentary for U.S. News, that collaboration is taking place on an international scale with new urgency. Rodriguez-Galindo is executive vice president and chair of St. Jude’s Department of Global Pediatric Medicine, as well as director of St. Jude Global. In December 2018 more than 160 people from 52 countries met in Memphis to form the St. Jude Global Alliance, an international collaboration intended to improve health care around the world.
“With our global partners, bringing quality care and cures to children with cancer everywhere in the world is now possible,” Rodriguez-Galindo tells U.S. News. “We realize this won’t happen overnight; it’s a long process that will require the best of us.”
Childhood Cancer: Seeking a Better Global Solution
This special report is made possible by support from the Solutions Journalism Network, a New York-based nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems.
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The Global Effort to Find and Treat Children With Cancer originally appeared on usnews.com