AIDS activists in China remain angry at what they see as the culpability and inaction of authorities in Henan Province, while government officials there remain implacably hostile to people they see as troublemakers. Nevertheless, reports Nick Young with Mian Liping (勉丽萍), things are changing in Henan, but the stand-off between government and citizen activists seems to be delaying the kind of progress that has been seen in neighbouring Anhui.

“Things haven’t changed that much in Henan,” Dr. Gao Yaojie (高耀洁) tells us. “The government has created model areas to show it’s doing something, but there are still counties that are not open (公开) and where they get nothing.”

We are sitting in the modest apartment of this 80 year old paediatrician turned activist who has received no less than four international human rights awards for her fourteen-year quest to expose the Henan AIDS epidemic—caused by “blood stations” that bought plasma from poor peasants, infecting many with HIV in the process. Gao’s living room is stacked with books and papers, and the spry old lady keeps getting up to delve among the piles, bringing back newspaper clippings and copies of letters and reports she has written. A young volunteer assistant sits at a table in the corner, addressing envelopes to send out copies of Gao’s latest book.

Gao agrees to take us to an “AIDS village” so we can see for ourselves. We arrange to meet later in a restaurant across town because, Gao says, gesturing at the tower block opposite, her home is under constant surveillance. She gets to the restaurant before us, with two sacks of second-hand clothes to distribute to the villagers.

A two-hour drive from the provincial capital of Zhenghzou, through the steamy heat of harvest time on the north China plain, brings us to Wanglou village in Shidao township of Dengfeng City (登封市石道乡王楼村). It is a poor enough place, barely accessible by a rutted, mud road that leads to a jumble of shabby, red-brick houses amidst fields strewn with plastic waste.

It turns out that Dr. Gao has not been here for several years. We have to stop for directions several times and she seems surprised when locals do not remember her. And it is hard to agree with her claim that things haven’t changed.

Villagers tell us that about 20 people from the community of 1,500 have died of AIDS, and that another 34 are ganranzhe (感染者, literally, although not very politically correctly, “infectious people,” that is, HIV positive). Thirty of them are now receiving free, anti-retroviral medication from a Centre for Disease Control (CDC) health post in the village, and those we speak to say that, after some initial side-effects, they are in fairly good health. The other four ganranzhe, we are told, do not yet need treatment.

The government-funded treatment is not effective against social stigma. Villagers say their community is locally notorious for AIDS and this makes it hard for them to find work outside. Also, their children are made to take an HIV test before being accepted into local kindergartens.

In one household we meet an AIDS widow and her three daughters: one aged 17 and 12-year-old twins. Some while back, the mother tells us, “some people” came and said they could give the family income support. They took away her ID card and household registration documents, returning them several days later with a post office savings account book. But no money had yet arrived.

The woman, who appeared to be functionally illiterate, did not understand the banking system any more than she understood who her intending benefactors were. We took the 17 year old daughter—who has just graduated from middle school and hopes to train as a kindergarten teacher—to the post office in Shidao, 15 kilometres away. When the pass book was swiped, two CNY 90 (USD 11) deposits, at monthly intervals, showed up in the account.

The money, we surmised, came from local Civil Affairs authorities, who, like the CDC, have lumbered into action in fulfilment of the national “four frees and one care” programme and provincial government pledges. China does not yet have a national policy for financial aid to families where parents have died from AIDS, but Henan is one of several provinces that have started to provide regular support. Evidently, however, local officials lack the time, the patience or the skills to communicate effectively with beneficiaries.

Ample room here, it would seem, for an NGO to provide hands-on, case-by-case advice and support, helping families to access and get the best out of resources—whether medical or financial—that the government provides.

Shallow grass roots

The area does indeed have a recently formed NGO devoted to “People Living With HIV/AIDS”—the Shaolin Guan’Ai Zhi Jia (少林关爱之家). Its Director, Li Hailiang (李海亮), lives in Wanglou village, in the largest, tidiest and most prosperous home we visited. The rooms are freshly painted, and a garage accommodates a tractor and a motorbike.

Li tells us that some 200 people in the Dengfeng administrative area have died of AIDS, and that there are around 1,000 surviving ganranzhe. Li’s group aims, he says, to help them observe medication regimes (药物依从性) and “to follow Buddhism” (念佛). It rents an office in Dengfeng City for CNY 300 (USD 38) per month, and is paying CNY 1,050 (USD 133) a year for each of eight children who have lost one or both parents to AIDS, to enable them to attend kindergarten. Li tells us he is also expecting funding support, soon, from the Guangzhou-based Guan’Ai Zhi Jia (led by UN prize-winner, Thomas Cai), to give 20 families CNY 2,000 (USD 250) each for “self-help through production” (生产自救), probably by raising sheep or pigs.

Li’s was the last house we visited in Wanglou. We had asked other HIV positive villagers if they knew of the Guan’ Ai group, but their answers were vague. We asked Li how many Wanglou villagers participated in the group’s activities and he said just two. One reason, he suggested, is that the activities currently centre on a monthly meeting in Dengfeng City, and people are unwilling or unable to pay the travel expenses.

Evidently, the mere existence of such “grassroots” organisations does not suffice to reach people like the AIDS widow living three minutes’ walk from Li’s home.

Turbulent activists

China’s central government began several years ago to acknowledge and respond to the AIDS epidemic—having been shaken, most observers agree, by a 2003 SARS outbreak that showed the potential for public health failures to wreak economic havoc. In their dealings with bodies like the Global Fund to Fight AIDS, Tuberculosis and Malaria, national government officials have ostensibly moved some way towards accepting the international orthodoxy that civil society has a critical role to play in an effective response. But this is a hard conceptual shift to make for authorities in Henan who were globally shamed by Chinese activists, some of whom are determined to keep up the pressure.

Wan Yanhai (万延海), whose Beijing-based Zhi Ai Xing (知爱行, literally “Knowledge, Love, Action”) website repeatedly denounced profit-seeking health authorities that licensed or directly ran “blood stations,” argues that “Everywhere policy is changed by people protesting, not by think tanks reports.” (Zhi Ai Xing was originally known as Ai Zhi Xing, but altered the sequence of characters in 2004 in order to comply with new regulations on names issued by the Ministry of Industry and Commerce, under which bureaucracy the group is registered.) In Wan’s view, the national government’s change of heart on AIDS was brought about “not by Bill Clinton, not by Dr. God, not by international NGOs or media—it was by people on the ground. The energy of the action came from the need of the people on the ground.”

Blood sellers infected with HIV in Henan were, Wan says, “active in petitioning (上访), demonstrations, campaigns, occupying government offices, and this played a very important role in changing government policy.” Beijing-based activists encouraged and facilitated—or, Chinese government officials would doubtless say, instigated and stirred up—such protests by, for example, bringing groups of Henan petitioners to Beijing to make their case to central government, international aid agencies and media.

Zhi Ai Xing now employs 20 full-time staff, and its operations include pursuing compensation claims on behalf of people who contracted HIV after selling blood or receiving transfusions. The group was involved in one successful petition brought by 17 people against the Nong Ken Zongju (农垦总局), a state-owned agriculture conglomerate in Heilongjiang Province. According to one of the petitioners, a hospital under the group’s administration had paid “blood ghosts” (血鬼) CNY 160 (USD 20) a time for blood that was sold on at CNY 600 to patients needing transfusions. The 17, most of whom say they became infected after receiving transfusions, formed in 2005 a self-help group they called Black Earth (黑土地) after the region’s peaty soils. The company finally agreed a settlement of CNY 200,000 each (USD 25,000), with an additional monthly allowance of CNY 3,000 (USD 370).

This is a precedent that Henan government authorities would almost certainly find alarming, and it is hardly surprising if they regard groups such as Ai Zhi Xing as anathema. Nor have they welcomed NGOs in service provision.

Orphan fiasco

Li Dan (李丹), a young astronomy postgraduate student at the Chinese Academy of Sciences in Beijing, was once a close collaborator of Zhi Ai Xing, serving as its Administrative Director (执行主任) in 2002. He left at the end of that year because, he now says, his “ideals” (理念) differed from those of Wan Yanhai who “doesn’t know how to compromise.” Whilst recognising that “the government needs criticism to push them forward,” Li wanted to give practical assistance to families affected by the epidemic.

He turned his attention to AIDS orphans (a phrase that in China generally includes those who have lost only one parent to AIDS). He established a China AIDS Orchid Project (纳兰红日) that began to distribute small sums of money for orphans’ education and general care—starting, he says, with donations from his own university scholarship—through HIV positive people in Henan villages. But he soon “found that they were cheating.” He then supported a private orphanage in Shandong Province, which was willing to accept children from Henan, but decided the orphanage director was not to be trusted either.

In June, 2003, he rented an apartment in Henan’s Shangqiu City (商丘市) and hired local women to look after a few orphans from the AIDS villages. But local schools would not enrol the children so Li sent them back to their villages and in October 2003 set up, in an abandoned mosque in Shangqiu, the residential Dongzheng (东珍) school.

Staffed with young volunteers, Dongzheng opened with just two children, but numbers soon rose to 17. Six months later, local government authorities forcibly closed the school and took the children into their care. (In December 2003, the Shangqiu Civil Affairs Bureau had already closed a similar venture created by an HIV positive Henan man, Zhu Jinzhong [朱敬忠]). The Orchid Project re-opened a “coaching class” (辅导班) in the same premises, but this lasted only 20 days. The China Islamic Association demanded the return of the mosque, so the volunteers and children moved to a nearby house. But, according to Li, government officials told local residents there was risk of infection from the school and the residents “encircled” (包围) it. Then officials persuaded relatives of the orphans to withdraw the children.

Since 2004, the Orchid Project has stepped back from efforts at direct provision and reverted to providing financial support for AIDS orphans, via a small office established in Henan’s Kaifeng City (开封市). But this too has encountered problems.

Funding initially came mainly from American Chinese reached, says Li, through “the American on-line community,” providing tuition and “living expenses” (生活费) for 388 orphans. The funding was then taken over by the Beijing-based Ai You Hua Xia Charity Foundation (爱佑华夏慈善基金会, www.hxcharity.org, China’s first private, grant-making foundation to register under new regulations introduced in 2004.) However, according to Li, after the Foundation’s Secretary General visited the Kaifeng area he decided to withdraw support. The slack was taken up by the China AIDS Orphans Fund, based in the US twin cities of Minneapolis and St. Paul, which sponsored 300 children through the Asia Foundation’s Give2Asia programme. But, in early 2007, Give2Asia froze the funding because of accounting irregularities. By the middle of the year, most of the children promised assistance were no longer receiving it. Meanwhile, letters circulated anonymously by email, claiming to be based on interviews with former project staff, accused Li of mismanagement and mistreatment of staff.

Li Dan’s adventures have been reported periodically by Chinese and international media and he received a Reebok Human Rights Award in 2005. He has been arrested and detained several times and, he says, he and his colleagues have endured harassment and severe beatings from local officials or their hired thugs. Yet for all the fame and all the beatings he readily concedes, sitting in his run-down courtyard office in Beijing, that his practical assistance to Henan AIDS orphans over the last four years has amounted to rather little.

“Big-bellied PLWHAs”

We were unable to interview government officials in Henan but a remark made by a county-level CDC worker in neighbouring Shandong Province, where the trade in blood products also led to an HIV epidemic, seemed revealing.

The ganranzhe “have big bellies,” this man told us. “At first they just wanted to stay alive and asked the government to give them medicine; but once they get medicine they want more, they want to shake off poverty and set off on the road to prosperity.” He went on to complain that an NGO had been handing out pork and eggs to people with HIV and that this stirs them to ask “Why doesn’t the government give us more?” Rural people, he lamented, just don’t understand the routine burdens and budgetary constraints of government.

The resentment evident here is all the more remarkable for the fact that, as the CDC officials in this county also told us, the provincial health authorities had known as early as 2000 that some villages had a high HIV prevalence but decided to keep this a secret. As late as 2003 they were still conducting secret surveillance by sending out health teams who asked volunteers to come forward for “Hepatitis B screening.”

Officials who knew about the unfolding tragedy but failed to act are disposed, it seems, to regard the NGOs as natural enemies; while the NGOs themselves often harbour a sense of outrage that makes it extremely hard for them to engage constructively with the authorities. Anger and resentment on both sides makes, at best, for muddled progress.

Not working together

This is not to say that NGOs have no impact on the authorities. On the contrary, just as advocacy activists helped expose the epidemic, the service delivery efforts of some groups appear to have set the Henan government’s agenda—but in ways that are perhaps unfortunate.

Provision for children whose parents have died is a case in point. Li Dan believes that his Dongzhen school and similar facilities established by other groups were forced to close because the officials were “ashamed” to be seen doing nothing while private citizens were taking a lead. In response, the Henan Civil Affairs authorities established its own network of “Sunshine” homes for AIDS orphans. Yet, even if this makes it easier to centralise the delivery of care services, taking children away from their relatives and communities and isolating them in specially designated institutions risks increasing stigma and reducing the chances of their leading relatively normal lives.

Against that, however, it must be said that communities do not always spontaneously protect vulnerable children. Li Dan found that older people and children are “often pestered for money to cover debts left by dead relatives, so are forced to go out and beg.” The Dongzhen school, he says, was intended to provide a stable setting for orphans to study.

Duan Jun (段军), a Henan native who heads the Suiping County Ganranzhe Mutual Aid Group (遂平感染者互助小组), tells of a village where in 2005 an AIDS widow with two children were forced out by neighbours who threw sand and faeces in their well. Duan and his group of fellow ganranzhe went to the village in order, he says, to “threaten” the wrongdoers. “We found lots of very poor children, one whose father had died, his mother ran off. The kid didn’t even have shoes in winter. So we started to take some children back to a house we rented in another village and supported them to go to school.”

Duan traces his HIV infection to a blood transfusion after a 1999 car crash in which his wife died. Duan was driving, and drunk. He spent the next two years feeling “extremely depressed.” He then went to Beijing where he was earning CNY 1,600 (USD 200) per month labouring in a steelworks when he began to experience recurrent fevers. In 2003, after numerous tests, he was eventually diagnosed as HIV positive. He is now taking anti-retroviral drugs supplied through the local health system but says that he often feels unwell and believes that he needs the expensive, second-line treatment that the government is unwilling to provide.

In 2006 Duan married a young HIV positive woman from Guangxi Province who he met over the internet, and during school semesters the couple now accommodate 12 children, aged 7-16 years, in a courtyard home they rent in the county town. The dormitory rooms are simple but clean and cheerful, with the walls covered by pictures the children have drawn, and a cook is employed to make lunch. The facility has been supported by donations from “a woman in Shenzhen,” “an American Chinese man” and the Taiwan Guan’Ai Zhi Jia—but the latter withdrew its support in 2006 after Duan was arrested for organising HIV positive people to petition the government. (The donor, he explains, was afraid of being associated with the action.) The loss of funding meant that they had to scale down: originally, they accommodated 18 children.

Duan is quite open about his “petitioning,” which began when the mutual aid group was established in 2005. He believes that complaining to the authorities is necessary and to some extent effective. For example, he says, the clinics set up by the CDC to provide treatment to around 1,000 ganranzhe in Suiping (out of a total population of 530,000), were originally “very bad, with dirty quilts and mosquitoes. So we took photographs and went to Beijing to show people how bad the conditions were, and afterwards the conditions improved.”

But this kind of action strains relationships with local authorities. “Communicating with government is very difficult,” Duan says, “to the point that they really don’t like you to do anything.” The day before our visit, he told us, local police had called on him to check that he was at home because that day a lot of ganranzhe had gone to Zhengzhou to petition. “If I had gone I would have been in trouble,” he says.

Despite the uneasy relationship with government, Duan says that since 2005 he and other core members of the mutual aid group have spent a lot of time with CDC staff. This has enabled the group to contact most of the HIV positive people in the county, including those newly identified by the national voluntary testing scheme. (Numbers of cases are continuing to rise in the county, according to Duan. Previously, he says, most new cases were among blood sellers or people who had received transfusions but 2006 saw new cases among pregnant women, which Duan counts as evidence of rising sexual transmission.)

With funding from the UK based HIV/AIDS Alliance the group has organized a series of training sessions with invited experts from Beijing’s You’ An hospital giving guidance on maintenance of anti-retroviral drugs, “because a lot of people in rural areas stop taking medicine either because of side effects or because they feel better.” More than 200 of the ganranzhe have so far benefited from the trainings, according to Duan, and “better quality patients” are encouraged to coach and monitor their peers. Medication observance has improved dramatically, says Duan, although peer coaching is hard to sustain without offering compensation to the coaches.

The CDC also helped to persuade schools in the county town to waive out-of- catchment fees for the children lodging in the Duan houshehold.

However, Duan remains critical of the four health posts established to offer treatment to Suiping’s HIV positive population. They are poorly equipped, he says, and staffed by barefoot doctors or recent graduates who have no knowledge or experience of treating opportunistic infections.

He would like to see “a network of Henan NGOs and a common voice,” with the capacity to compile written materials to present to government. “Cooperation is okay,” he says, “But sometimes it is also necessary to petition.”

Anhui: another country

Henan’s lingering misfortune is that other places which also suffered HIV epidemics related to the blood trade have done better at drawing together government, community and NGO efforts at HIV prevention and mitigation.

In this respect, driving across the province’s southern border into neighbouring Anhui is like entering a different country. The counties under the administration of Fuyang City (阜阳市), just across the border, are also poor by national standards. A third of the area’s population of 9.37 million have left in search of work, and for some rural families selling blood was once a regular source of income. But in the “AIDS villages” here, carefully painted prevention and care slogans have displaced the family planning propaganda that typically adorns walls across rural China: “Take care of life, Prevent AIDS” (关爱生命，预防艾滋);“No need to fear AIDS, it can be prevented and treated” (艾滋病不可怕，防治它有办法) “Helping AIDS patients is helping ourselves” (帮助艾滋病人就是帮助我们自己). This comes too late for the hundreds, perhaps thousands, of blood-sellers who have already died, but shows how openly the epidemic is now acknowledged.

In 2006 the provincial government approved an AIDS prevention and control strategy, including “four ones and three lines” (四个一，三条线), that is ahead of national practice. The “four ones” require that every village affected by the epidemic should have at least one tarred road and one clinic, and that every family should have its own house and water supply. The “three lines” stipulate that the Civil Affairs authorities will provide a monthly subsidy to all families where parents have died (CNY 60 where one parent has died, CNY 100 for those who have lost both), and to all people of retirement age who the epidemic has left with no children to support them (CNY 100); and that each affected family will be entitled to free treatment, to the value of CNY 600 per month, in the village clinics. During the three days we spent visiting communities in the area it appeared that these are not just empty pledges but are being delivered.

Anhui authorities have also been open to cooperation with international organisations. We travelled to outlying villages with two locally recruited staff from the Hong Kong based Chi Heng Foundation (智行基金会), delivering food parcels to affected families, which the Foundation also provides with financial support. This seemed a carefully targeted and smoothly-run operation, with detailed record keeping. The Chi Heng staff, who were cordially received, clearly knew the families quite well and spent time with each, chatting and listening to their news. The villages were tidy and most families seemed, if not exactly prosperous, at least to be making ends meet. But there were also scenes of considerable pathos, such as the barely furnished single-room home shared by two teenage boys.

Save the Children UK has been working in the area since 2005 with a programme that includes the creation of village-level children’s activity centres and libraries, micro-loan schemes and income generation projects. The work has been funded mainly by the Hong Kong based Kadoorie Charitable Foundation.

Although the programme channels some financial support to individual families, the emphasis here is on facilities that benefit entire communities. The activity centres offer recreational and informal learning opportunities (with the assistance of volunteers from higher education institutions in Fuyang) for all children, with those who have lost parents to AIDS playing alongside less unfortunate peers. A micro-loan facility serves families that have HIV positive members alongside families that do not. A village workshop that produces plaster ceiling mouldings employs HIV positive workers but also counts on the managerial and marketing skills of a local entrepreneur.

Save the Children has tried to promote local ownership of the work it initiates by creating management committees (comprising, in the case of the children’s activities centres, under-18 year olds) or free-standing organisations (such as the Jieshou Self-Help Association [界首市砖集镇艾滋病生产自救自助协会], a membership organisation that runs the loan projects and also now works with Heifer Project International), and by working closely with local entities such as the Li Xin County Charity Association (利辛县慈善协会).

Another major priority is to engage with as many government partners as possible. International development organisations often aim at a “multi-sectoral approach” in China, but Save the Children has the advantage of comparatively long experience, having been working in the HIV/AIDS field in other provinces since 1995, and in other fields in Anhui since 1992. Work in Fuyang began in 2005 with a study tour for local government officials, including a vice-governor of Fuyang, to Ruili Prefecture (瑞丽自治州) in Yunnan, where Save the Children had for several years piloted a similar, “holistic” model that was finally turned over to local government agencies and NGOs.

Since then, Fuyang officials have been “eager and active” partners, according to He Yao (何瑶), who manages Save the Children’s Fuyang programme and whose association with Save the Children began more than a dozen years ago when she was working as a care assistant in a Civil Affairs orphanage in Anhui’s Guangde County (广德县). Fuyang’s recent AIDS response, and provincial policy elaborated in 2006, she notes, embraces many of the principles that Save the Children has tried to promote. “It is too big to claim that this resulted from our project,” she says, “But we feel that we certainly influenced it.”

It is always dangerous to declare success. Anhui may have many warts and much suffering in dark corners beyond the villages we visited. But, on the surface, at least, something is certainly happening here that has not yet happened in fractious Henan.

This report is based on interviews in Beijing and field visits to Shandong, Henan and Anhui in June 2007.