INNER MONGOLIA, North China — Wang Yanqing was certain that her daughter was going to die. Over the course of five weeks in autumn last year, she watched her 14-year-old girl Yingying — a pseudonym — become weaker by the day. Yingying had aplastic anemia, a rare disease of the bone marrow that causes severe blood cell deficiencies. She was too weak to stand, and her blood had largely lost its ability to clot, meaning that a tiny cut could become life-threatening.

Wang was powerless to help. At first, she and her husband Zhang Chen, who both work as farmers in an impoverished rural part of the Inner Mongolia Autonomous Region, had borrowed 200,000 yuan ($29,000) from local villagers to pay for Yingying’s health care. But that money was gone, and their daughter was still sick.

The family’s predicament is tragically familiar to many poverty-stricken Chinese families caring for severely ill children. Local governments provide basic health insurance to all citizens, but this only covers a portion of total medical costs and is capped at different amounts in different localities. The proportion of state-funded care tends to be significantly lower in rural and low-income areas, making it exceptionally difficult for people with rare, expensive-to-treat diseases to get the care they need.

A relative of a child diagnosed with cancer sits in the stairwell of a hospital in Beijing, July 28, 2018. Che Yicen/VCG

“Many rural families delay treatment, or even completely give their children up for dead, because they think they’ll never be able to afford the medical fees,” says Xu Weihang, director of China Rural Kids Care (CRKC), a nonprofit organization that funds additional health insurance for rural children with critical illnesses.

According to the National Health Commission, China’s universal health insurance plan currently covers more than 95 percent of the population. But the country still struggles to provide high-quality coverage to millions of people. In Horqin Right Front Banner, a rural county-like jurisdiction in the Inner Mongolia Autonomous Region where Wang and her family live, the state only covers 65 percent of medical fees; residents must pay the remaining 35 percent themselves. More than half of all families classified as “poor” in Horqin blame high medical bills for their descent into poverty, according to the county government. Improved rural health care is a pillar of President Xi Jinping’s drive to eradicate poverty in China by 2020.

Many rural families delay treatment, or even completely give their children up for dead, because they think they’ll never be able to afford the medical fees. - Xu Weihang, director of China Rural Kids Care

Since 2016, the central government has required local health bureaus to guarantee an extra level of insurance for millions of children with severe and expensive-to-treat diseases, such as leukemia. Known as “critical illness health insurance,” the idea has parallels in other countries. In the United States, for example, the state-administered Children’s Health Insurance Program (CHIP) funds care for uninsured children from families with modest incomes. But China’s critical illness insurance also suffers from a lack of funding, especially in economically struggling, rural areas.

As a result, a small but growing number of local health authorities are collaborating with social organizations like CRKC, who shoulder some of the treatment costs for kids with severely debilitating diseases.

Wang had never heard of aplastic anemia before Yingying was diagnosed with it in July last year at a specialist hospital in Tianjin, a northern city more than 600 kilometers from Horqin. Doctors told Wang that it would cost 300,000 yuan for Yingying to undergo an essential bone marrow transplant, with additional fees to follow.

Due to the complex nature of the surgery, no hospital near Horqin could perform the operation. As a result, Yingying’s family was forced to seek care in other parts of China, where the girl’s insurance coverage was even lower than in her hometown.

“That was an astronomical sum of money for us,” Wang says, speaking in hushed tones from the edge of the kang, a traditional, northern Chinese heated brick bed, on which Yingying sleeps. A sterilization cabinet and an air purifier lie near the kang, and visitors — as well as Yingying’s parents — must wear face masks at all times. “We’re just normal farmers. I’d never seen 300,000 yuan in my entire life.” In a good year, Wang adds, the family makes only 30,000 yuan.

Wang Yanqing (right) and her daughter, Yingying, sit on a ‘kang’ at their home in Horqin Right Front Banner, Inner Mongolia Autonomous Region, July 12, 2018. Cai Yiwen/Sixth Tone

In Chinese hospitals, it is customary for patients to pay the costs of surgery upfront and claim some of the overall fees back from their insurer afterward. To raise the initial money for Yingying’s surgery, Wang tried to sell a house that she and her husband had built in 2011 as a wedding gift for their son. But it failed to sell; in Xinlong, the family’s home village, most able-bodied people move away to look for work, and few remaining residents need extra property.

Money concerns turned Wang’s once jet-black hair gray, she says. “Every moment of every day, I was thinking about where I could get the money,” she recalls. She and her husband knocked on virtually every door in Xinlong — a village of some 1,800 households — eventually borrowing a combined 200,000 yuan from other residents at various high interest rates.

The sum still wasn’t enough to cover Yingying’s transplant. Back in Horqin, that 200,000 yuan dripped inexorably into the coffers of a local municipal hospital, as the family emptied their pockets for a series of drug prescriptions and blood transfusions just to keep Yingying alive. Finally, in September, the family brought their daughter home, despite warnings from doctors that doing so would endanger Yingying’s fragile health.

Yingying looks at a family photo taken prior to undergoing surgery and placed in her home in Horqin Right Front Banner, Inner Mongolia Autonomous Region, July 12, 2018. Cai Yiwen/Sixth Tone

“I had no energy at all,” murmurs Yingying from behind her mother. The teenager is still frail and bedridden, and usually lets Wang do most of the talking. “I was so scared,” Yingying adds. “I thought I might not make it.”

When Xu, CRKC’s director, approached the family a month after their return to Xinlong, Yingying was confined to her kang. “I still remember how she looked up at us,” Xu says. “Her eyes were filled with the desire to live.”

Founded in 2012, CRKC is currently the only organization in China funding supplementary health insurance for critically ill rural children. Although their work draws comparisons with other projects like the International Red Cross, CRKC is different because it only funds health insurance, not direct medical care. The nonprofit partners with local governments to ensure that the extra coverage is given indiscriminately to all children in a particular locale. Aside from Horqin — where the CRKC has entrusted more than 7 million yuan to local insurance companies since 2014 — 10 further counties have cooperative agreements with CRKC.

Every moment of every day, I was thinking about where I could get the money. - Wang Yanqing, Yingying’s mother

At present, CRKC predominantly relies on individual donations solicited on several Chinese online platforms, including e-commerce giant Taobao and social messaging app WeChat. But its ultimate goal is to help realize a national health insurance system that works for everybody. “China has become a strong economy. It should develop a more comprehensive health insurance coverage plan and rely less on [domestic and foreign] medical aid to help less-advantaged families,” says Wang Zhenyao, president of the Beijing-based China Philanthropy Research Institute and one of the founders of CRKC.

The model is not without its shortcomings, one of which is a lack of public awareness about local government partnerships. Wang did not know about the organization’s arrangement with the county health bureau when Yingying was diagnosed, and only found out about it after the family had taken on substantial debt.

But once the family informed the local health bureau of Yingying’s disease, things quickly fell into place. The bureau contacted the insurance company where the CRKC’s funds were held, and the company, in turn, released a sum of money to cover the vast majority of Yingying’s care. The transfer meant that the family only paid the much more manageable sum of 10,000 yuan toward her hospital bills from then on.

Furthermore, CRKC helped to secure Yingying an appointment at a top Beijing hospital where, in January, she underwent her long-awaited bone marrow transplant. The operation was a success, and her condition is now stable. CRKC funding also pays for Yingying’s imported drugs — few of which are available on the public health care system — though the family bears the fees for outpatient care.

A view of fields and mountains in Horqin Right Front Banner, Inner Mongolia Autonomous Region, July 12, 2018. Cai Yiwen/Sixth Tone

Yingying was fortunate to have been born in one of the CRKC’s current partner counties. But her family’s initial plight sheds light on the inequalities that persist in China’s health insurance system. Had Yingying been born in Beijing, the state would have covered 75 percent of all her medical fees up to a cap of 170,000 yuan, and up to 70 percent of the rest of any further expenses. Even with this level of coverage, Wang and her husband still would have been unable to afford the rest of Yingying’s care. But as nonlocal residents, the price was even higher: The family were told that the government would only cover 55 percent of Yingying’s medical fees up to a cap of 700,000 yuan.

Then there are travel and accommodation fees to consider. Beijing is around 640 kilometers from Horqin — a 38-hour round trip on the train that Yingying and one of her parents now undertake every two weeks. Around the time of their daughter’s operation, Wang and her husband spent four months in a small, run-down apartment in the capital. The rent cost 7,000 yuan a month — much more than the 400 yuan a month typical for similar apartments in Horqin.

The country needs to consider driving fundraising from the provincial or even national level, in order to broaden access to good health insurance. - Cai Jingnan, policy expert

To address the issue, this year CRKC started paying families a maximum of 50,000 yuan toward all living costs accrued during a child’s treatment. “Without CRKC, Yingying would not be alive today,” Wang says.

Liu Yanqing, the government official in charge of Horqin’s rural health insurance scheme, is glad that CRKC has relieved some of the burden on local authorities. “They respond flexibly to families facing different problems — something to which government policy finds it hard to adapt,” he says.

But Liu knows that the philanthropy of nonstate organizations like CRKC is not a viable solution to Horqin’s chronic health care gap. Like many rural counties, the Horqin government generates lower revenues than its urban counterparts. This means that less money is earmarked for health care, leading to patchy insurance coverage.

Sometimes, the county also falls victim to questionable policymaking at the regional and national levels. Last year, for example, officials rallying behind a national poverty alleviation campaign ordered the local health bureau to cover 90 percent of treatment fees for low-income patients with critical illnesses — a welcome relief for poor families, but a far greater proportion than the county government used to cover. Horqin followed the directive to the letter and is now in arrears, according to Liu.

A teenager suffering from bone cancer hugs his mother at a hospital in Xiaogan, Hubei province, April 9, 2015. Ma Luyao/VCG

One suggested long-term solution is to make insurance less local. “In rural regions, especially in less-developed central and western provinces, health insurance funding is clearly insufficient to cover everyone with a critical illness,” says Cai Jiangnan, director of the Center for Healthcare Management and Policy at the China Europe International Business School in Shanghai. “In the future, the country needs to consider driving fundraising from the provincial or even national level, in order to broaden access to good health insurance.”

Cai is quick to emphasize that public hospitals must stop chasing money-guzzling insurance payouts that fund unnecessary treatments. In China, some doctors earn a commission on the medicines they prescribe, while others are encouraged to overtreat patients to pump up profits for their hospitals. Cai says that this money would be better spent on critical illness treatments.

Yingying’s family is not out of the woods yet: Her parents still need to pay back their debts to their fellow villagers. But Wang takes inspiration from her daughter’s fortitude in the face of adversity. Although the girl suffered the pain of bone marrow surgery and a number of drug-induced side effects, she always retained her poise. “She never made a sound, even when she was in great pain, and she never complained,” Wang says.

Yingying poses for a photo at her home in Horqin Right Front Banner, Inner Mongolia Autonomous Region, July 12, 2018. Cai Yiwen/Sixth Tone

Gradually, Yingying is regaining some of her former vitality. Although she takes immunosuppressants that leave her vulnerable to infections, she is now well enough to make the occasional visit to her relatives’ homes across town. Sometimes, when she hears a catchy tune, she even dances along for a few minutes — but remains careful not to exhaust herself.

These small moments of normality are very moving for a family who expected to lose Yingying less than a year ago. Now, Wang says with tears in her eyes, “I finally have hope that she’ll live.”

Editor: Matthew Walsh.

(Header image: Yingying walks along a road in Xinlong Village, Horqin Right Front Banner, Inner Mongolia Autonomous Region, July 12, 2018. Cai Yiwen/Sixth Tone)