Charity program brings hope to children with major diseases
By Ji Jing  ·  2023-05-29  ·   Source: NO.22 JUNE 1, 2023
Deer Light organizes a free clinic in Lancang Lahu Autonomous County in Yunnan Province on December 24, 2021 (COURTESY PHOTO)

Li Juan, a mother of two in Fuping County, Hebei Province, still hopes to wake up one day to find it was all just a bad dream. Three years ago, she took her 10-year-old son to Beijing to undergo major surgery—a liver transplant. Two years ago, she took her daughter to Wuhan, Hubei Province, to have the same surgery.

Li's two children were diagnosed with familial hypercholesterolemia—a rare inherited metabolic disorder that negatively alters the way the body processes cholesterol, and leads to a higher risk of coronary disease and a greater risk of early heart attack.

To help the new liver survive in their bodies, both children had to take anti-rejection medicines, or immunosuppressants, to weaken their immune system's response. They need to take these medicines for the rest of their lives.

Li was worried sick about the medical costs given the two surgeries had depleted the family's savings—not to mention the 500,000 yuan ($70,975.3) they had to borrow from relatives and friends. To make matters even worse, the medicines and regular checkups come to 60,000 yuan ($8,517) every year.

Fortunately for Li, in 2021 she was approached by a charity program that promised to partially cover her children's medical expenses every year.

This particular program, called Deer Light: A Future Without Defects, was launched in August 2021 by Alibaba Health, the flagship healthcare platform of Alibaba Group, in collaboration with the Alibaba Foundation and the March of Dimes Birth Defects Foundation of China (MDBDF), a foundation established in 2011 to reduce the rate of birth defects and promote the recovery of those born with defects. The name of the project was inspired by the mascot of Alibaba Health, a deer. The program aims to help children with birth defects from families with financial difficulties, those who have limited access to medical resources or who lack information about charity organizations. Starting from September 2022, it began to include children with acquired major diseases.

A helping hand

Birth defects affected an estimated 5.6 percent of newborns in China each year, or approximately 900,000 infants, and were the leading cause of infant mortality and a major cause of morbidity, according to an article published in 2020 in China CDC Weekly, an academic journal published in English by the country's Center for Disease Control and Prevention, citing data from a report on birth defects released by the then Ministry of Health in 2012.

After the country implemented a third-child policy in 2021, the proportion of women of advanced maternal age increased, posing new challenges to the prevention and control of birth defects. Moreover, acquired major diseases such as cancer and severe blood diseases pose increasing threats to children's health.

In recent years, the medical burdens of families of children with major diseases have been alleviated thanks to the improvement of the country's medical insurance system. However, as it costs a lot to treat children with major diseases, their families still need to shoulder huge expenses—aside from their medical insurance's partial reimbursement. As a result, a lack of financial resources leads to many patients losing out on the most effective treatment options.

In November 2021, the General Office of the State Council issued a guideline on improving medical insurance and assistance systems for major and critical diseases, requiring the establishment of a medical insurance system dominated by the government with the participation of multiple parties. It encourages charities and other nongovernmental organizations to set up major disease assistance programs as a supplement to the national medical insurance system. Alibaba Health's Deer Light program is one answer to the government's call.

However, in implementing the program, staff members realized just how much would need to be done to popularize the program among the parents of affected children.

In the past, patients would learn about assistance programs only when seeking treatment at large hospitals or through media reports. However, if they don't visit a hospital due to financial difficulties, they may be unaware their children have access to these programs. Plus, many children in China's underdeveloped regions are looked after by their grandparents, who often struggle to master new technologies, smartphones included. All these factors hinder children's chances of receiving the program's aid.

To track down more children with major diseases, Deer Light has adopted what it refers to as an "active aid model." For instance, the program teams up with doctors at local hospitals and basic-level government officials who help screen patients to see if they qualify for assistance and put up the program's posters in villages to look for those eligible.

The oldest son of Wang Yishun, a father of two in Yongshun County, Hunan Province, was one of the children with birth defects found by government workers. The young boy, who is 6 now, was born with a cleft lip and cleft palate.

To save up enough money for treatment, Wang and his wife worked endless hours. Wang had gone off to larger cities to take on different jobs here and there, and his wife was growing tobacco back home. Finally, they had made enough to pay for their son's first surgery. But due to an inadequate understanding of their little boy's physical defect and financial pressure, they decided against any follow-up surgeries to improve his speech or the appearance of his lip and nose.

In late 2021, Yongshun was included in the Deer Light program and Liu Han, an assistant to the county head who was responsible for implementing the project in the area, learned about the family's struggles during a visit to them.

Liu then told the family about the charity project and they were happy to accept its aid. And so, their boy received his second surgery at Hunan Children's Hospital in Changsha, Hunan, in February 2022. After the procedure, a smile appeared on his face, lighting up the room. The project covered more than 12,000 yuan ($1,702.9), or 80 percent, of the son's medical expenses not reimbursed by the family's medical insurance. In addition to medical costs, the program also offers subsidies for the transportation and accommodation expenses incurred while seeking medical treatment.

Free clinics are another important way for the program to find patients. Since the latter half of 2021, the project has teamed up with its partner, the MDBDF, as well as senior medical experts to provide free clinics for children with major diseases in underdeveloped counties in regions such as Sichuan, Qinghai and Shaanxi provinces.

When the doctors on free clinic duty come across children who may be seriously ill, Deer Light staff members will help them get an appointment with experts at a local hospital affiliated with the program. And if the local hospital cannot offer adequate treatment, they will help the patients find better hospitals.

Lele, a young girl from Julu County in Hebei Province, was spotted when the program was offering free clinics in the county in 2021. Lele, who is 8 now, was diagnosed with severe congenital heart disease soon after she was born and the doctors on duty realized her lips and fingers had turned blue due to a lack of oxygen in her blood. An oxygen deficiency typically means the heart isn't pumping enough oxygen-rich blood around the body. Program staff helped her family get in touch with experts at Fuwai Hospital, specializing in cardiovascular diseases, in Beijing and arranged for her to receive treatment there. The surgery was a success and Lele can be seen happily dancing around with her friends today.

Ma Li, Vice President of Alibaba Health, told Beijing Review that the program "doesn't wait online but looks for children in need of help offline." "We hope not to leave out any child in need of help and wish for them not to miss out on the golden opportunity of treatment," he said.

As of March 31, the project had carried out 37 free clinics in 31 counties across 15 provincial regions and found more than 14,000 children with congenital or acquired major diseases. More than 1,300 of whom received its aid.

(Print Edition Title: A Leading Light) 

Copyedited by Elsbeth van Paridon

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