Self-help groups of people living with incurable illnesses or disability provide an invaluable forum for information sharing and personal support. But although they are appearing in China, as Chang Tianle (常天乐) reports, their growth is hampered by problems of legal status and fundraising.

Ever since he can remember, Guan Tao (关涛), 34, has known he has haemophilia. But he never knew another haemophiliac until he met Chu Yuguang (储玉光) at a conference in 1999.

Unable to walk since he was nine, Guan only went to school for three months and spent most of his time at home. “I barely met or talked to anyone outside my family. That meeting was a turning point for me,” he remembers.

The two soon found they had much in common: boyhood experience as a patient, medical treatment they had been through, even the hallucinations they had while suffering extreme pain. “For the first time in my life, I felt truly understood by someone,” Guan says. “My family and doctors are caring, but they don’t suffer the pain I suffer. So it’s very hard for them to comprehend my situation.”

Guan and Chu decided to set up a website. The original idea was simple: to get to know more haemophiliacs and share their experience. A year later, they finally landed a CNY 9,100 (USD 1,100) grant from a Shanghai company that is one of three domestic producers of haemophilia’s main treatment, Factor VIII, extracted from blood plasma.

An IT engineer himself, it took Chu only five days to build the site, “Haemophilia Home of China” (血友之家). It includes medical information, stories of the members, news on haemophilia, a message board and a chat room.

The site attracts many haemophilia patients and laid the foundation for a national self-help organisation, the Haemophilia Patients Sodality of China (中国血友之家联谊会), which now has more than 3,000 members all over China. Guan alone now has contact with some 2,000 fellow haemophiliacs.

Although people with haemophilia need to take great care of themselves—and, if untreated, the illness causes disability through damage to joints—the members of the Sodality are not content to communicate only online. The organisation arranges training sessions in hospitals to educate new patients about the illness and about blood product safety, and it holds events for patients and their families to meet. Key members like Guan and Chu also refer people from distant areas to specialist hospitals and offer a helping hand to individuals in need.

In September, the Sodality held its first national meeting in Beijing, with representatives from all over the country attending a training session on how to raise funds for poor patients. Most haemophiliacs suffer from frequent, internal bleeding and require injections of Factor VIII to assist clotting. This can cost several thousand yuan a month, and some patients have to give up the treatment because they cannot afford it.

Advocacy is therefore also an important component of the organisation’s work. Through petitions, it has managed to have haemophilia included in the government’s medical insurance program, so that in several cities a high proportion of treatment costs are now covered.

However, without registered legal status, fundraising inside China is a mission impossible. Fortunately, Guan and his colleagues have established contacts with the World Federation of Haemophilia and other international charitable organisations that offer grants and medicines, including Factor VIII. At the peak year of 2004, the Sodality distributed medicine to over 400 patients nationwide.

“Sometimes the medicine we send out saves a person’s life,” Guan says.

Lack of specialist support

Although an estimated one in 10,000 people—as many as 130,000 in China altogether—have this inherited disease that prevents blood from clotting properly, only a small number of Chinese doctors in less than ten cities are able to diagnose and treat it. According to Wu Runhui (吴润晖), a haematologist at Beijing Children’s Hospital, the capital city has no more than ten doctors with specialist knowledge in this area.

The Sodality works closely with the hospitals and doctors in patient education. “In most cases, they are in a better position than doctors to explain the illness to other patients and their families,” says Wu.

With support from international organisations like the World Federation of Haemophilia, the Sodality introduces latest treatments and invites overseas doctors to China to meet and train their counterparts.

Haemophilia is incurable and patients have to depend on blood products all their life. Patients and their families usually feel frustrated or even desperate when first diagnosed with haemophilia. “With the Sodality, they find a channel to communicate with people in similar situation and try to solve the problems together. These are not things that we doctors can do for them,” Dr. Wu points out. The group, she says, also teaches families how to care for the patients.

Indeed, Guan and other key Sodality members are so trusted by fellow haemophiliacs that during a two-hour interview, he received three phone calls from patients asking for advice.

While freely helping others, Guan says he also gains tremendously from the group. After he finished his three-month school life, he isolated himself from society and lost his communication capacity and confidence. “By working with the group and with other people, I re-gained my confidence and abilities,” he says. Now he runs online business selling mobile phone components, which brings him around CNY 1,000 a month.

He never expected that the simple idea of a website would lead to such a large, although still “loose” (松散的) organisation. “We grow bigger and bigger without even realising it,” he says. Recently, they have started to feel that they need a strategic plan for future development. But he is not sure of the next step or ultimate goal.

Registration frustrations

Tianjin’s Yun Tingting (运婷婷) is clear about her goal. She is also the founder of a website for other people like her. She fell from her third floor home when cleaning the windows in 2000 and injured her spinal cord. She has been confined to a wheelchair ever since.

Since its launch in 2004, Yun’s online bulletin board for spinal cord injured people has attracted more than 4,000 registered users. But Yun’s ambition is not confined to the website. She also wants to do something more tangible and “meaningful:” to create a community for individuals with spinal cord injury to live and work.

“We could do small business, such as handicraft production, to support ourselves,” Yun says in a telephone interview. She is even investigating reverse mortgages as a possible funding source, since many of the injured people live with their parents, in properties the parents own but might agree to sell to provide long term security for their children.

Some friends from the website have shown interest in Yun’s idea. A woman in Guizhou wrote to her expressing her enthusiasm about the project: “If I could join this community, my parents won’t have to worry about me any more.”

But Yun feels she may have to disappoint her and other friends. Without legal status, it will be very hard to make the idea a reality.

“As a national organisation, the registration procedure is too complicated for disabled people like us,” she sighs. She hasn’t even considered fundraising or seeking any sort of external help.

Guan Tao shares her frustration. Both organisations are run by patients, with little external help. Guan says that most of the members not only suffer from illness and disability, but also financial problems. It is unrealistic, he says, to ask for contributions from them.

He has few resources of his own to draw on. He lives on a state allowance and largely relies on his parents. He never had a job until last year when he started his e-business.

Some patient groups established by doctors or hospitals receive funding support from government or pharmaceutical companies, but independent self-help groups like Guan and Yun’s organisations rarely have such opportunities.

The biggest practical support they receive is from doctors. Haemophilia Home of China invites three Beijing doctors to go online regularly and answer patient’s questions. Over the past two years, Wu Runhui has posted over 150 pages on the website, answering about 1,500 questions.

Yun Tingting also keeps close contact with a hospital in Nanjing, where doctors are willing to respond to patients’ questions through website.

Yet lack of a legal status and grim funding prospect leave the two organisations in an awkward situation. And this is common among patient-initiated self-help groups in China.

Qu Xiaowei (瞿晓炜), a mother with a six-year-old son who recently recovered from leukaemia, started a parents’ organisation in Shanghai to help families of children with leukaemia. She and five other core members spend their spare time in Shanghai Children’s Medical Centre, where more than 100 children are receiving treatment for leukaemia, to provide care and personal support for children and their families.

Experience sharing and moral support is important, she says. But when comes to financial difficulties, she feels powerless. “Of course we need cash to help impoverished children who cannot afford treatment. But [registration as a charity] is beyond our capacity,” she says.

While most patient self-help groups face such a dilemma, some have found the right track.

With strong support from the government, the Shanghai Cancer Recovery Club (上海癌症康复俱乐部) is registered as a legal entity. The club now has 8,000 members spread across 300 support groups around the city. Funding has never been a problem for them in the past 15 years. In a state-of-the-art building donated by the Shanghai Charity Foundation, the Club runs a residential cancer “recovery school” as well as a tea house, dance room and library for cancer patients.

But for younger and smaller organisations, this model is not easy to copy.

“In the end, it’s all about government policy,” Guan says.