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Seeking Compensation for AIDS: Tainted-blood Victims Join Forces with Advocates

December 21, 2012

They straggle into the city center in groups of four and five throughout the morning, impervious to the constant downpour that soaks their clothing, some using crutches to walk. By mid-morning, some 300 Chinese petitioners, hailing from every corner of Henan Province, and possibly elsewhere, have assembled in front of the Zhengzhou Civil Affairs Department, where they hope a provincial official will accept their petition for government compensation and help.

The petitioners, victims of a blood collection and sale scheme that went awry in the mid-1990s, are among some 700,000 rural Chinese who were infected with HIV/AIDS from tainted blood. The epidemic is directly connected to government bumbling and mismanagement of the blood collection and supply process. For close to 20 years, the government has turned a blind eye to the plight of these people, unwilling to take responsibility for the scandal.

They’re among the poorest and most abused segments in China’s population, with little education, few job skills, and for the most part unable to work because many are too weak. At the same time, they’re among the most savvy groups in China when it comes to organizing their activities and helping one another.

China’s HIV/AIDS victims are organizing across provincial lines, communicating with fellow patients, activists, civil society groups and supporters throughout China, via social media such as Weibo, or microblogs, the Chinese equivalent of Twitter, and chat machines such as QQ, similar to Skype. Mainly poor farmers, few have computers, but the majority have access to the Internet via smart phones. In Henan, China’s largest agricultural province, and home to the bulk of HIV/AIDS victims, patients have even established regional leaders to coordinate their work—and these leaders played a role in organizing the hundreds of petitioners who showed up in front of provincial government offices on August 27, 2012.

Just before August 27, local officials in different parts of Henan had picked up news of the planned event via monitoring of communications among the petitioners and made attempts to keep them from going to Zhengzhou for the protest. In one rural home I visited, two government officials stood outside the house to prevent one activist from leaving. The activist does not have HIV/AIDS himself, but his wife does, and so do five of his six siblings—he’s the only one in the family who has not contracted the disease. But the authorities were too late already. Anticipating he’d be stopped, the man left home several days in advance, and could not be found. He was hiding in Zhengzhou and would be among the protesters.

The HIV/AIDS victims have also gotten considerable help from Chinese non-profit groups such as Korekata AIDS Law Center, and the Aizhixing Institute, China’s first AIDS awareness  group. These civil society groups operate on funding from both domestic and foreign sources, with the most grassroots ones getting financial support from China's army of netizen donors.

Last March, Chinese and foreign researchers issued an important report titled: "China's Blood Disaster: The Way Forward." The report was jointly published by Asia Catalyst, a U.S. non-profit organization, and the Korekata AIDS Law Center in Beijing. It documents the urgent grounds for compensation and the failure of existing channels, such as the judicial and petitioning systems. Korekata's researchers visited remote villages to interview 30 victims of the tainted-blood disaster and studied the dossiers of another 30 victims.

The government estimates that 700,000 people on the mainland today are living with HIV/AIDS, with 65,100 of those infected through tainted blood sales and transfusions. Li Dan the founder of Korekata, however, puts the number of people infected by tainted blood alone at one million. Only 100,000, or just 10 per cent of those infected, are still alive, he says.

Ye Haiyan, also known by her web handle Liumang Yan (流氓燕, "Hooligan Sparrow"), is based in Guangxi Province but appears to be everywhere. Although she started out as an advocate for sex workers, she has also been actively working with HIV/AIDS victims. I met her with a 12-year-old AIDS patient in Beijing in July 2012, and a few days later ran into her again with several other patients and young volunteers. In July, she had just returned from sex worker conferences in the United States and India. In August, she was in Zhengzhou meeting with AIDS petitioners.

AIDS activist and victim, Liu Ximei, with volunteer Wen Dao. Beijing, July 7, 2012. Photo Credit: Paul J. Mooney.

Liu Ximei is one of the AIDS victims Ye has helped. Liu, who got infected via a tainted blood transfusion following a farm accident when she was just 10, told me she was hopeless and on the verge of committing suicide when she unexpectedly met Ye at an AIDS conference a few years ago. Ye turned her life around, introducing the young woman to artist-cum-activist Ai Weiwei, who presented her with a brand-new laptop. Ye taught Liu how to use social media and provided emotional support for the young woman, who was ostracized by fellow villagers and her own family, after it became known she had AIDS. Liu, who now advocates on behalf of AIDS victims, with the help of young student volunteers, also runs a hostel for poor AIDS patients in her county seat in Henan.

Liu and Ye have joined forces with two recent university graduates from Henan Province, Wen Dao and Cao Xiaodong. In summer 2012, the students used their money to fund a hostel near the Henan Infectious Diseases Hospital in Zhengzhou so that poor HIV/AIDS victims have a place to stay when they come to the capital for medical care. In a few months, they changed locations four times, being driven out by landlords or local police after they found out the purpose of the hostel. Unfazed, they are continuing to search for new locations.

Paul Mooney (慕亦仁) is an American freelance journalist and has reported on China, Taiwan, and Hong Kong since 1985. At various times, he has been on staff at Newsweek, the Far Eastern Economic Review, and the South China Morning Post. He has lived in Beijing since 1994.

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