Last year from January 1 till November 20, Shanghai recorded 1,479 new cases of AIDS and admitted 727 victims of the disease to hospital. The Shanghai Health Bureau reported 134 deaths from the disease. Most of the new cases were young men and the figures showed a 14.3 percent increase on the previous year. The bureau noted that 60.9 percent of the new cases had resulted from sexual activity between males, a 9 percent increase on 2011.

The vice mayor of Shanghai municipal government and the head of the Shanghai AIDS Prevention and Treatment Committee, Shen Xiaoming, told a meeting last December that one of the major reasons for the increasing number of deaths from AIDS in the city was that victims were not seeking treatment until it was too late.

"Because they are afraid of prejudice, many victims don't come to hospitals until their health has seriously deteriorated. This also means that the disease can spread more easily in the meantime."

Away from the official methods of handling the disease, Shanghai has seen the rise of community-based organizations dedicated to helping victims obtain swift and effective treatment and battle the disease and prejudice. They may be succeeding where official approaches have struggled.

At this year's annual meeting of the Shanghai Committee of the Chinese People's Political Consultative Conference (CPPCC) in January, a report to the Shanghai municipal government urged the government to provide more support to these community-based organizations working with AIDS victims.

Grass-root workers

Community-based organizations are non-profit self-funded organizations run usually by volunteers and established to assist specific welfare or social purposes. Most of the community-based AIDS organizations in Shanghai are grass-root organizations dealing with groups at risk of contacting the disease and working on prevention or treatment programs. The proposal at the CPPCC meeting was unique – it was the first time organizations like this had been acknowledged at this level. But AIDS organizations like this have been around for some time.

In 1995, Shanghai was the first city in the country to have a community-based organization that focused on AIDS prevention. By the end of 2012, the city had 40 such organizations, according to a report by the Shanghai Committee of Chinese Peasants and Workers Democratic Party.

The report said these organizations have become an effective extension of government work on AIDS prevention and they get closer to the public and especially those at risk of contracting the disease. The report pointed out that these organizations used methods of discovering and helping AIDS victims that were not available to government departments.

However, of the 40 AIDS organizations, only five have been registered with the Shanghai Civil Affairs Bureau. Another five are registered with the city's industrial and commercial administration as business organizations. The rest are not registered meaning they lack a legal identity, which can legitimize their activities. Most of these organizations have no formal articles of association and lack management systems. This has sometimes damaged their reputations and made them difficult to oversee.

The report advised the city government to ease the registration system for welfare groups like the community-based organizations and to encourage more organizations to help in AIDS prevention.

'Mission impossible'

Wu Jian wrote the report. As a disease control officer at the Huangpu District Center for Disease Control, which is responsible for AIDS prevention programs, he has been working with these community-based organizations for a long time. He told the Global Times that he thought these organizations were indispensable bridges linking official health departments to AIDS victims and those at risk of contracting the disease.

"About 10 years ago, I became aware that the number of homosexual men contracting AIDS was increasing every year. We wanted to learn more about this group so that we could introduce an effective prevention program. But this turned out to be a mission impossible. We couldn't find them or become part of their lives which made our work very difficult," Wu said.

But then Wu met some workers at community-based AIDS organizations who had close contacts with gay groups including the group known as Xinsheng. Xinsheng is one of the most prominent AIDS organizations in Shanghai. It was founded by Zheng Huang and his friends in 2004 after they got support from Oxfam Hong Kong, an independent development and relief agency.

"Our original purpose was to improve the safety of male sex workers and reduce the danger of infection for them," Zheng told the Global Times.

"In the beginning we focused on male sex workers and gay health issues as well as their rights. Many of them became infected because their 'clients' refused to use condoms. And when they became sick they were afraid of going to hospitals because of the prejudice they would encounter."

Unlike government doctors, these sex workers trust Zheng and his colleagues. "We are friends with them and they confide in us. We have convinced them to have counseling and testing at government-approved centers for their own good." He and his colleagues visit sex workers every week and through them hundreds of new cases of AIDS have been discovered and treated. The personal details of the victims remain completely confidential.

From the start Xinsheng has worked with the Shanghai Center for Disease Control. Zheng and his team accompany those who have contracted the disease to hospital and give them emotional support through their treatment.

Wu Jian said that Xinsheng helped the center link up to a hidden independent group and brought the victims to the center where they could benefit from public medical resources.

Xinsheng also provides psychological counseling and legal advice for male sex workers. Through the people they have helped they can spread their assistance to others in similar situations and deliver the same messages of care and support. "If they call us, they can talk to us as long as they like," Zheng said.

In 2007 some female sex workers asked Xinsheng for help and nowadays the organization also offers assistance to women. The government provides each patient with a 200 yuan ($32.11) subsidy for medical fees.

The shame of sex

Although prostitution is illegal, the reality is that it thrives and it is blamed for spreading AIDS throughout China. Zheng believes that the big problem is the lack of education. "Traditionally in China, it is shameful to discuss sex. Teachers and parents don't like to talk about it or discuss sex education. This means that most young Chinese have learned about sex from watching porn."

Although community-based AIDS organizations have been working effectively for some time and this has been acknowledged by authorities, it is only recently that they have been given a legal status. "Although we worked with the government for a long time, it was very difficult for us to get legal registration as a non-governmental organization (NGO)," Zheng said.

In China, to be registered as an NGO, organizations must be affiliated with a government department. "But no government departments wanted us to affiliate with them because they thought it would be risky to be involved with an organization like us and they didn't want to take the responsibility," Zheng said.

At present, most of Shanghai's community-based AIDS organizations are not officially registered. Zheng registered Xinsheng as a company with the industrial and commercial administration. "At least this way we can insure our employees," he said.

Because of the lack of a legal identity, these community-based organizations can't solicit donations and government departments prefer to invest in government-backed organizations.

Zheng said that most city community-based organizations had relied on financial support from overseas charities but with the global economic crisis worsening, this support has been reduced and most overseas financial support will end this year. He has no idea how they will cope then.

Not getting easier

AIDS prevention work in Shanghai is not getting easier. The city health authorities warn that Shanghai is at a critical stage now where the disease could spread from the high-risk groups to ordinary people. Prevention will play a crucial role which is why the proposal to the CPPCC meeting urged support for these community-based organizations as quickly as possible.

"Without a legal identity, they have no financial support and cannot work effectively," said Wu. "And without a legal identity, these organizations cannot be managed properly."

His report noted that because they lack resources these organizations have been limited to a narrow range of activities. But considering Shanghai's population and status, the city's efforts to help AIDS victims were far from satisfactory.

Wu suggested that the government properly register these organizations as soon as possible and set up a special fund to support their work.

"For AIDS prevention and treatment, the community-based organizations, the health authority and the government are playing different roles - they should be working with each other to do a better job," said He Na, a professor from the School of Public Health at Fudan University. 

China reported its first case of AIDS in 1985. By the end of June 2012, there were 474,528 AIDS and HIV-infected patients in China. Although the country's infection rate is low, it has been growing in Shanghai in recent years.