SHANGHAI -- Hanzhang Wu says she can still vividly recall the acute pain in her stomach that began tormenting her in late June 2018. "I was thinking to myself maybe I ate too much," the 7-year-old says.
When doctors at two hospitals in Hanzhang's hometown of Wenzhou were unable to diagnose the cause of the pain, the girl's parents immediately took her on the four-hour high-speed train journey to the Shanghai Children's Medical Centre (SCMC), a leading pediatric cancer hospital in China.
Doctors at the center quickly zeroed in on the problem: small round-cell sarcomas that doctors say are rare in children and would spread quickly if not immediately treated. Specialists began treatment for rhabdomyosarcoma, a cancer of soft tissues, in the hopes that her cancer would respond.
Today, Hanzhang remains in Shanghai for treatment. Her parents are renting a one-bedroom apartment near the medical center to stay with her as the outlook seems promising.
The Wu family's experience illustrates both reasons for hope and the sobering challenges that people in China face when finding treatment for cancer afflicting children. Thanks to a shift in government spending priorities and decisions to partner with outside organizations, including from the United States, the world's most populous nation has recorded startling success over the past decade in boosting rates of diagnoses and successful treatments for pediatric cancer cases.
Despite that progress, however, major obstacles remain. China's sheer size, substantial inequality of medical resources, vast disparities in access to treatment and lack of clinical research infrastructure remain barriers to extending affordable care to all pediatric cancer patients, health care experts say.
"Many hospitals are not equipped with adequate resources to handle pediatric cancer due to lack of funding," says Dr. Jingyan Tang, director of the Pediatric Hematology and Oncology Key Laboratory, under the National Health Commission. "The size is also a problem. China has a huge floating population, which contributed to the difficulty in data collecting. We don't have good data to conduct quality research. We don't have enough support for clinical research on pediatric cancer, either. Hospital services oriented towards children are also lacking."
How China progresses in its treatment of childhood cancers will affect more than the tens of thousands of children in the country who are annually treated with some form of malignant tumors, international health experts say. The country's sample size of children with cancer is large enough that it can provide scientifically sound data on treating drug-resistant cancers that wealthy countries cannot. That data can in turn inform public health officials around the world on how to diagnose and treat childhood cancers.
Inequalities in Medical Cost Coverage
Where China is today in treating childhood cancer is the result of sustained efforts to increase medical insurance coverage. The Chinese government launched an overhaul of its health care system in 2009 with the aim of providing universal basic health coverage for its 1.4 billion people.
Although official data show that more than 95% of the public now has health insurance, the level of reimbursement from insurance is limited, especially for critical diseases such as cancer. Heavy economic burdens are subsequently placed on patients. In many families across China, illness causes poverty.
Coverage varies vastly from province to province, but The New Rural Cooperative Medical Scheme, in which local governments provide health insurance to citizens with catastrophic diseases, offers around 70% coverage of costs for patients receiving treatment in their home province. That level of coverage drops to about 50% or less, however, if patients seek treatment elsewhere, as the Wus did -- and in order to do so, some provinces require patients to get special permission.
"Compared to other developing countries, China is in a much better shape. But there's still plenty of room for improvement," says Dr. Ching-Hon Pui, head of the Oncology Department at St. Jude Children's Research Hospital in Memphis, Tennessee, a leading U.S. pediatric cancer institute and a pioneer in collaborating with Chinese hospitals in childhood cancer research.
In 2010 the Chinese government included acute lymphoblastic leukemia (ALL) -- which accounts for 80% of all leukemia cases in the country -- in the national insurance scheme and today patients with ALL are fully covered. About 15,000 new childhood cases of leukemia are annually diagnosed, according to an estimate by the National Health Commission. With an average treatment period for pediatric leukemia cases at two to three years, about 45,000 patients under 18 are receiving treatment across the country at any given time.
But insurance coverage for other childhood cancers varies among the provinces and municipalities, says Pui, who has worked with top Chinese hospitals in Beijing and Shanghai for more than two decades as director of St. Jude's China program.
The city of Shanghai, for example, provides near-full insurance coverage for all types of childhood cancers, but other cities and provinces may offer coverage only for certain types of cancer and at lower rates, Pui says. The differences in insurance coverage matters for treating a disease such as cancer in a middle-income country such as China. The standard childhood leukemia protocol at the SCMC, for example, costs anywhere from 80,000 yuan (about $11,600) to 100,000 yuan (about $14,500).
Understanding the Scale of the Challenge
One of the first challenges facing oncologists and other health care experts in China was to understand the scale of the challenge. Collecting data from clinical trials, having quality-control measures in place and being able to accurately assess outcomes are crucial to providing both accurate diagnoses and developing effective protocols for pediatric cancer treatments.
In China, however, as in many developing countries, cancer research priorities are skewed toward adults. Developing standards for childhood cancer registration are arduous, complex tasks that few hospitals in the country can perform, says Tang, the director of the Pediatric Hematology and Oncology Key Laboratory under the National Health Commission. One consequence of historically weak data collection: "We don't know what the exact incidence rate of childhood cancer is in China."
That began to change in December 2017, when, while inspecting hospitals in Wuhan, a provincial capital city in central China, Premier Li Keqiang found many young cancer patients going back and forth between their poorer hometowns and bigger cities for treatment. He asked the national health authorities to prioritize treatment on childhood leukemia, and select designated hospitals in all provinces for that purpose.
In October 2018 China rolled out its first national childhood cancer registry -- the China Children's Cancer Registry -- initiated by the government at the long-running suggestion of pediatric oncologists.
The registry, led by the SCMC, requires nearly 600 designated hospitals across China to register all newly diagnosed pediatric leukemia cases, including demographic data, information on disease subtypes and treatment outcome. The registry has also recorded patients diagnosed between 2015 and 2017. The first group of results showed 11,000 newly diagnosed cases in 2018, but Dr. Shuhong Shen at the SCMC, who manages the registry, estimated the real number could be 14,000.
Only 50% of the designated hospitals have reported childhood leukemia patients. "Many of these designated hospitals are not up to par by our professional standards," Shen says. For example, he says, there are no more than 10 hospitals in all of China that can accurately measure the key clinical diagnostics called minimal residual disease (MRD) -- the number of cancer cells that remain in the body after treatment and a main factor for relapse.
As a result, parents with the financial means will still try to place their children in better hospitals in bigger cities. Around 85% of patients in Shanghai Children's Medical Centre are not Shanghai locals, according to Fen Zhou, the head nurse. The hospital, which has a pediatric cancer staff of 114, receives an average of 700 patients per year, at an average physician-to-patient ratio of 1 to 8 during regular hours. But during off-hours from 4:30 p.m. to 8 a.m., only two nurses look after 42 patients.
Better Care -- for Those Who Can Afford It
Hanzhang's parents did not hesitate to seek medical care outside of their native coastal Zhejiang province, even though they knew it would mean far greater personal expenses.
"There are only three places in China that we can trust to treat childhood cancer, and they're Beijing, Shanghai and Guangzhou," says Feng Wu, Hanzhang's father. Feng Wu's wife, Huanhuan Xue, agrees, adding that "even the Provincial Children's Hospital, the best in Zhejiang, often refers patients over to Shanghai."
After being diagnosed last July, Hanzhang began a 10-cycle chemotherapy regimen. The tumors, 18 centimeters (7 inches) at diagnosis, disappeared after six cycles. The chemotherapy course lasted for eight months, until March before Hanzhang was transferred to a cooperative hospital near the SCMC for radiation therapy to reduce the likelihood of relapse. Hanzhang completed her therapy in June and now shows no signs of the cancer.
Hanzhang's parents have taken unpaid leaves from their jobs -- Feng is a product quality control analyst and Huanhuan is a music teacher -- to stay in Shanghai and focus on Hanzhang's illness.
The couple have a combined annual income of 300,000 yuan, or about $44,000, and are paying 4,000 yuan a month to rent an apartment near the SCMC. They have spent about 560,000 yuan during the past few months, including 400,000 yuan in medical fees. Less than 40% of those fees can be covered by their health insurance.
"We could get a higher percentage (of costs) covered if she'd been treated locally," Wu says. "We bought commercial health insurance for ourselves because we thought the adults are the pillar of the family and we should safeguard our health first to be able to provide for the kid."
Feng continues: "We'd never thought this scenario could have happened. Who would have thought to buy insurance of major diseases for a little kid like her? So when it happened it's like (the) sky crashing down."
A High-Risk Patient, a High-Risk Gamble
Daili Dang had to travel farther than the Wu family to obtain quality care after her 1-year-old daughter, Shuling He, developed a fever around the Chinese Lunar New Year in February. Dang flew her daughter from their home in Gansu, a poor province in Northwest China, to Shanghai after days were wasted bouncing between different hospitals in the provincial capital city of Lanzhou, including receiving a misdiagnosis from the city's best hospital.
After consulting with local physicians in Gansu province and searching on their own for information, Dang and her husband found SCMC, arriving there seven days after their daughter first showed fever. Doctors there diagnosed Shuling with acute myeloid leukemia. A six-cycle treatment of chemotherapy is now being carried out, with bone marrow stem cell transplants suggested since Shuling is categorized as a high-risk patient.
Stem cell transplants can help improve the survival rate by 30% for the high-risk group, doctors at the SCMC told Dang. "This is kind of a gamble, but (I) am willing to take." Dang says. The SCMC has China's biggest center for stem cell transplantation, with 10 bone marrow transplant units.
Gansu province covers 80% to 90% of medical fees for patients who are treated in the province. But for the parents of children such as Shuling who opt for cross-province treatment, the maximum coverage by insurance is 50%, Dang says.
In order to seek treatment outside of Gansu, Shuling's parents first needed to apply for an out-of-province treatment card in the provincial Social Security department, which "could be quite difficult if you don't have 'guanxi'," says Dang, using the Mandarin word for the social networks and relationships people in China use to facilitate dealings. Luckily, her husband is a civil servant. "Such a card could be difficult to obtain, and we got ours because my husband used his work connections."
For people struggling with poverty, cancer treatment for a child may be a luxury they can't afford. For Shuling, the inpatient service fees incurred between late February and the end of April was around 60,000 yuan. Dang, whose monthly salary is a little over 3,000 yuan (about $437), rented a flat in Shanghai at more than 4,000 yuan per month, like the Wu family did, and estimates the entire cost of her daughter's treatment, including out-of-pocket medical expenditures not covered by insurance, at over 300,000 yuan -- even more if they opt for stem cell transplantation.
"I'm under massive financial burden, and simply couldn't gather such a huge amount of money all at once," she says. "I had been running around to borrow; if I could sell off my flat fast enough I would."
China's Struggles May Help Other Countries
The National Children's Medical Center, which will host China's first pediatric blood oncology unit, was approved by the central government in 2017 and will start construction in the suburbs of Shanghai later this year, aiming for completion in 2022. Modeled after the U.S. National Cancer Institute-designated cancer centers, the new hospital aims to pursue children-oriented clinical care and research, with cancer treatment as a focus.
Still, more needs to be done to improve China's pediatric clinical research infrastructure, says Dr. Tang, the SCMC's oncologist who is director the Pediatric Hematology and Oncology Key Laboratory under the National Health Commission. "I don't think any mainland Chinese hospital is equipped with clinical data managers," she says. "We simply can't afford those professional posts."
The VIVA China Children's Cancer Foundation, a nongovernmental organization established in 2014 in Hong Kong by Singaporean lawyer Jennifer Yeo, currently collaborates with more than 20 Chinese hospitals to provide funding for research, data management and data safety monitoring, and helping with medical personnel training.
Still, China's experience in pediatric cancer treatment will have global impacts, according to Pui of St. Jude, who was described by former health minister Zhu Chen as the doctor who "introduced the most advanced leukemia treatment protocols to China."
With current cure rates for childhood acute lymphoblastic leukemia approaching 90% in many high-income countries, it has become increasingly difficult to study the remaining drug-resistant subtypes because of the small number of patients. The survival rate for ALL patients in China is at 70% to 80%, according to the latest government estimate. Carefully designed trials in China can provide unique opportunities to address challenging questions that may affect efforts to improve cure rates worldwide, Pui says.
The next stage for Pui's team at St. Jude and top pediatric oncologists in mainland China and Hong Kong is to develop research and standard treatment protocols for other types of childhood cancer, such as brain tumors and neuroblastoma. "We hope to help improve outcomes for an estimated of 50,000 children diagnosed with cancer in China per year in the coming years," he says.
For Hanzhang, the Wenzhou girl who's battling what she pronounces with precision as "undifferentiated small round cell sarcomas," the past year is an episode in her life she hopes to leave behind.
"I'll be just like other kids when I've fully recovered," says the girl, who's wearing a pink hat that matches her pink coat. She confesses one of the most painful moments for her was to have her head shaved. She "was embarrassed to death," she gushes, "but dad also shaved his head to show support, and that helped!"
Hanzhang resolutely rules out the prospect of becoming a doctor in the future, despite being able to rattle off a string of medical terms she knows by heart. "It's an exhausting job," she says. "I'd like to make a lot of money and buy a big villa."
Childhood Cancer: Seeking a Better Global Solution
This story has been supported by the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems, http://solutionsjournalism.org.
Ting Shi is a Hong Kong-based journalist and teaches at the University of Hong Kong's Journalism and Media Studies Centre. She's been writing and reporting about China and Asia for more than 15 years, previously as a senior correspondent with Bloomberg News, and as China Editor at South China Morning Post. She can be followed on Twitter @tshinflux.