Help for Needy CHD Children

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  APRIL 15, 2011 was the day that the Aiyou Huaxia Charity Foundation diagnosed fraternal twins Shi Shuangming and Shi Shuanglan from Eshan County, Yuxi City, Yunnan Province with congenital heart disease (CHD). Shi Shuangming was found to have an atrial septal defect, and his younger sister Shi Shuanglan a ventricular septal defect and severe pulmonary hypertension. The twins’medical expenses thereafter plunged their family into abject poverty.
  Shuangming and Shuanglan’s father also suffered from CHD as a child. His family’s penury prevented him from having the thoracotomy necessary to treat his condition until he was 13 years old. The tardiness of this surgery resulted in Shi’s obviously stunted growth and physical development.
  Cognizant of the Shi family’s medical history and economic background, the Aiyou Huaxia Charity Foundation – the world’s largest charitable institution for needy children with CHD – undertook to give Shi Shuangming and Shi Shuanglan financial assistance.
  On April 21, the foundation supplied the children and their parents with soft sleeper train tickets to Beijing and funded the twins’ preoperative examinations at the Beijing Huaxin Hospital (No. 1 Hospital attached to Tsinghua University). Eight days later, Wu Qingyu, superintendent of the hospital and distinguished cardiologist, successfully operated on Shuangming and Shuanglan. They both made full recoveries.
  The twins thus became the 10,000th CHD patients to have benefited from the foundation’s help. By the end of March 2012, the Aiyou Huaxia Charity Foundation had helped 13,015 such children.
  Focus on Children
  The Aiyou Huaxia is China’s first national private charity foundation. Helping children has been the foundation’s focus since its establishment in December 2004. In 2006 it set up its first medical assistance project, Aiyou Tongxin, whose aim is to help poverty-stricken CHD children.
  “We have also tried to launch other projects, such as matching bone marrows, giving medical aid to AIDS orphans and carrying out cochlear implants for deaf children. Unfortunately, due to inconsistencies in practice and unsatisfactory postoperative results, none came to fruition,” said Jiang Zhaohua, deputy secretary-general of the Aiyou Huaxia Charity Foundation.
  In 2006, an investigation group organized by the Ministry of Civil Affairs visited the foundation. Impressed with its transparent accounting management, the group suggested a cooperative program between the Ministry and the foundation to help children with CHD. After consulting paediatrics experts on various congenital diseases, the foundation reached a consensus on CHD, perceiving its factors of standardized surgical procedure, high recovery rate and calculable medical expenses as most compatible with such a project.
  Around 150,000 to 200,000 infants in China are born with CHD annually, according to state health department statistics, mostly in economically undeveloped regions. The good news is that standard surgical procedures can successfully treat 99.9 percent of these patients.
  “The most common complication for children with CHD is the repeated occurrence of pneumonia. Despite the industrious labors of patients’ parents, they are unable to earn enough to pay for expensive surgical procedures because all their savings go on treating pneumonia. Many families are impoverished by this vicious circle,” Jiang said. “Children are the most vulnerable social group, but also constitute the future of our nation. There is much that our foundation can do, but we opt for the most effective and accessible action.
  “For many diseases, the earlier the treatment, the more effective the result,” Jiang added.
  


  Pinpointing Deserving Children
  There are three ways of mitigating economic pressure on families in China stemming from children’s serious illnesses. First, substantial medical expenditures are proportionally reimbursed by the new rural cooperative medical service or social medical insurance system. If the residual payments are still too high, families can apply for medical assistance from the civil affairs department. If the balance to pay is still beyond a family’s means, it can apply for relevant relief funds from charitable institutions. Unfortunately not everyone is aware of these alternatives.
  To pinpoint children most in need, the Aiyou Huaxia Charity Foundation has employed various social resources, including basic level governments, branch offices of philanthropic foundations and grassroots organizations. Results have proven these to be effective in rapidly spreading publicity and gathering information. The foundation now helps children from all over the country.
  Once enough application forms are received from a certain area, foundation volunteers and doctors from designated hospitals go there to give volunteer medical consultations and screenings. Large-scale volunteer medical consultations are held every few months and small consultations more or less every month.
  Screenings generally take place in consulting rooms at county hospitals, equipped with a bed and a table on which to place B ultrasound diagnostic apparatus. Owing to limited space and the high number of consultations, all physicians other than the one operating the equipment work on their feet.
  Doctors inform parents about the type of CHD their child has and the relevant treatment. Volunteers verify information on children who stand to benefit from surgery to confirm that they are eligible for financial assistance.
  The parents of all patients, particularly those in remote rural areas, are so desperate to see urban-based doctors that they willingly set out before dawn and take several modes of transport to designated hospitals. Doctors and volunteers work right through until they have seen the last patient. No matter how late they finish, the team then goes on to the next hospital to prepare for the second day’s work. To save costs, it works in several counties of each area visited.
  “In general, we choose populous areas to promote our project. By using a selected spot to promote our work throughout the entire area, we hope to encourage more organizations in local and surrounding districts to focus on helping these children,” Jiang Zhaohua said.
  The project now has a clear, easy-to-follow operational procedure. A patient’s information is first gathered and verified. The foundation transfers funds for children eligible for financial assistance to the account of the designated hospital. To avoid risk of misappropriations, the aided family does not receive any funds. Each quarter or half-year the foundation assesses the designated hospitals. They are rated according to the accuracy rate of preoperative examinations, surgery success rate, expense control and project implementation. The foundation terminates cooperation with low-ranking hospitals, so perpetuating the virtuous circle between the project and hospitals with whom it cooperates.
  The foundation has so far established cooperative relationships with 36 hospitals regarded as authoritative in cardiomyopathy treatment, and entrusted each of them to receive aid applications.
  In 2010, CHD was included into the comprehensive arrangement of new rural cooperative medical service and the reimbursement ratio accordingly increased. As a result, the foundation can now help children with complicated CHD. The foundation also adjusts the rules of implementation according to specific circumstances in different provinces.
  “Taking into account actual costs of surgery, the reimbursement ratio and a family’s economic conditions, we provide each with aid ranging from RMB 10,000 to 40,000. We also mobilize other resources to help families that cannot afford the balance of medical costs,” Jiang Zhaohua said.
  Although the foundation has treated more than 10,000 patients, Jiang is still sorrowful. “Children die of CHD every day. At volunteer medical consultations some families are overjoyed to know that their children can be cured through surgery, while others cry because of delays. These mixed scenarios remind us of the cruelty of life and urgency of aid,” Jiang said.
  Every Donation Counts
  Some people regard the year 2011 as a watershed for China’s philanthropy. Owing to a handful of charity organizations’ misuse use of donations, however, the entire charity industry now faces the need for “credit reconstruction.”
  As China has no lack of wealthy citizens, it is not difficult for foundations to raise funds. The main issues are how these funds are used, and to make every donation count.
  The foundation received donations of around RMB 53.07 million in 2010 and RMB 69.74 million in 2011, according to the Aiyou Huaxia annual report. Since its founding in 2004, Aiyou Huaxia has raised more than RMB 200 million in donations.
  In 2011, the foundation passed the annual assessment of the Ministry of Civil Affairs, which gave it an AAAA grade – the highest possible for a private foundation.
  Financial outsourcing, nil project management costs and traceable donations have helped Aiyou Huaxia to win public trust, but queries nonetheless still arise.
  Some people say that the foundation does not charge management fees because it has a number of rich entrepreneurs on its executive council. This is because people in China still do not grasp the concept of philanthropy, according to chairman of the executive council Wang Bing. “We must first set up a mechanism that eliminates all uncertain factors. Only after philanthropy achieves stable development, and volunteers are replaced with paid employees can we consider charging management fees,”Wang said.
  The foundation hopes to build a platform for various resources and to motivate support for public charities in all social sectors.
  In 2011, based on the mature operation of the CHD project, the foundation set up two new projects – help for patients with leukemia, and for orphans and disabled children.
  “We hope to establish a replicable aid model that grassroots organizations can learn from and through which we can promote the development of philanthropy as national policy,”Jiang said. “To operate a charity requires not only passion but also positive guidance that impels a virtuous circle. Philanthropy needs a rational, professional approach.”
  

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