In early 2002, the Chinese government’s official estimate of the number of people infected with HIV within its borders was 30,000. Yet, at that time, estimates by independent Chinese epidemiologists ranged in the hundreds of thousands, a claim that would be supported by the WHO in 2003. The Chinese government, prompted by increasing international awareness brought on by journalistic efforts, soon changed its estimate to one million. That tremendous leap is telling of how much suffering was silenced and ignored for years; suffering that, unfortunately, persists.

 

Entire villages decimated by HIV have been systematically hidden from the rest of China and the world. Take, for example, the province of Henan, populated by almost a hundred million people. Predominantly rural, Henan is home to some villages in which more people are infected than not. But, with these small, agriculture-focused communities there is often only a single road or phone line leading to the rest of the world—if they have one at all. They are easily forgotten, regardless of the depth of their suffering.

 

It is no coincidence that the most affected villages are in rural areas, the same areas that are afflicted by poverty and economic stagnation. For these so-called “AIDS villages,” the prevalence of the disease is rooted in its poverty.

 

The Spread of HIV in Henan

 

In the late 1980’s, China underwent rapid economic development and sought to capitalize on all available resources and labor. Blood was among those resources—it was in demand for medical treatments at hospitals and for the production of drugs; and, to the provincial government of Henan, it seemed as if there was more than enough for their residents to give.

 

Residents of Henan have historically been conservative, and the attitude towards giving blood at the time was negative—it was feared that giving blood could weaken one’s body. As blood-collection stations set up in villages across Henan, however, travelling far to reach even the most secluded of settlements. In turn, local government and health officials ensured the public that giving blood was a safe procedure. Further, the peasants would be rewarded monetarily for blood donations. Indeed it would be more profitable to donate blood than to work the fields as they had always done.

 

For most of the members of these poor communities, selling their blood was a clear choice. Another layer of persuasion, the government-sanctioned message that giving blood was good for the local community and the economy of the country as a whole, helped to bring in the people for whom monetary promises were not enough. Failure to donate eventually became a stigma in communities where donation was particularly prolific. Social factors also came into play; often, the owners who ran the blood collection stations had relatives in the village, who would then personally endorse the sale of blood to their neighbours and other friends. These factors all contributed to the incredibly high numbers of people who participated in blood-selling at its peak.

 

While there are few, if any, inherent dangers with giving blood, the poor operation and conditions of blood collection stations led to the spread and outbreak of disease. The few regulations that existed around the collection of blood were very rarely enforced. “Bloodheads”, the brokers who acted as the middlemen between the hospitals and companies that bought blood and the peasants who sold it, often operated out of converted vans, using needles that were seldom changed or even cleaned.

 

Compounding the poor sanitation was the belief that the blood being collected was free from viruses and other contagions. Individuals were screened for Hepatitis B, but not for HIV, which was assumed to be a non-issue, or for Hepatitis C, for which testing technology was unavailable. At some point, diseased blood would be introduced to the massive blood stocks being collected from an unknowing peasant. The final element that led to such high rates of infection was the reintroduction of pooled blood into the veins of those who sold it. The economic interest in blood was focused on blood plasma, which composes slightly more than half of blood’s total volume. What was leftover, a mixture of red blood cells, white blood cells, and platelets, did not hold much monetary value. That, in turn, was separated out with a centrifuge and returned intravenously, allowing for donors to produce enough blood for another sale sooner, preventing anemia, and mitigating the fear that donating blood would make one weaker.

 

This practice continued throughout the 1990’s before it finally began to be weeded out. But by then it was too late for innumerable rural communities. It has been reported that almost 45% of adults under the age of 60 in Henan donated blood at least once, and that anywhere from 10 to 20% of those donors were infected with HIV; 90% of all HIV infections in Henan are the direct result of blood donation. Henan is now home to villages that bear some of the highest localized rates of HIV infection in the world.

 

The Effects of HIV in Rural Communities

 

Poverty plays a two-fold role in how HIV has affected these communities. First, it was the greatest motivator for peasants to sell their blood in the first place. Parents would often sell blood to supplement the income they made from farming, in order to pay for school fees for their children and to make up for the loss incurred by their children studying instead of working the fields. School fees in one HIV-stricken Henan village were the top expenditure for families. Income from donating blood would also be used to expand business prospects or build more solid homes. Aside from basic needs, the money was also used for small luxuries, a way for peasants to tap into a small part of the good life heralded by China’s economic development, shown to them through television and radio.

 

The seemingly obvious connection between the exchange of blood and the contraction of disease was unknown to the blood donors because of systemic barriers introduced by their poverty. Education is often poor in rural areas; one study of a Henan village found that 15% of adults were illiterate, making it challenging and more resource-intensive to spread information about how disease spreads. Villagers are generally unaware of how HIV spread; even medical personnel, on occasion, were unfamiliar with the disease. The relationship was not immediately inferable, either, given that it usually takes several years after infection for symptoms of HIV to appear. Misinformation by officials was also a contributing factor. Some booths were run by reputable factions, such as the police or the army, that people trusted and, in turn, assumed that the procedures would be safe.

 

The intersection between gender and class also played in a key role in changing how HIV affected these communities. Given that males would eventually carry on the family name, which is of great importance in rural communities in China, many families would have two children if the first was a girl, a legal practice under Chinese law. This increased the amount of money needed to support a family, driving more families to turn to blood donation.

 

Once a large proportion of the population was infected, poverty continued to play a role in the suffering of these people. It has greatly disrupted the family structure. In most farming communities, the typical family unit consists of a single child and his or her parents and grandparents. Grandparents have historically relied on their children to support them in their old age, filial piety being a central tenet of Chinese culture. However, the peasants who are currently parents to young children or teenagers are the same ones who were encouraged to sell their blood. Therefore, it is this intermediate generation that bears the highest number of debilitating diseases, physical pain, and death. This has rendered many middle-aged parents unable to work; and as such, the older generation—grandparents who previously thought they could rely on their younger children for support—are now forced to support two younger generations, working their farm into old age.

 

Even if parents do continue to work, their decreased physical strength and stamina inevitably means that they will produce less, earning less money with which they can provide for their families. There are also large costs associated with medicine and other treatments. To meet these short-term needs, families are often forced to sell their land and livestock, further reducing future income. Stigma also operates against those suffering from HIV, with food and livestock being harder to sell to neighbouring villages because of a baseless fear of contamination. In many cases, parents die regardless of money spent on medicine and care, leaving behind orphans with few resources with which they can work and attempt to rebuild their own futures.

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The devastation of communities is also attributable to the fact that most HIV infections occurred in a relatively short time frame. As a result, the onset of AIDS, and then death, occurs for large groups of individuals at the same time. When such huge proportions of these villages are sick, there is no one else individuals can rely on to nurse them back to health or lend them money. Villages become incapable of handling the epidemic on their own.

 

The inaccessibility of education that initially led to infection continues to spread and harm residents of these disease-struck villages. HIV continues to spread, even though blood collecting practices have stopped, because sexual education is poor. Many peasants are still unaware of how HIV can be transmitted, other than blood transfusion, and the price of condoms is prohibitive for many who are already struggling just to feed themselves. Fear also plays an important role. Seeing friends and family die slowly and painfully undoubtedly provokes a visceral reaction in residents who know that they may be infected themselves. The extent of that fear may prevent them from getting themselves tested for HIV.

 

The Chinese government instituted a policy called “Four Frees, One Care” more than a decade ago, promising, among other things, free drugs and counselling. But the barrier of education has mitigated a great amount of the potential benefit of this policy. Even though many rural inhabitants now have access to antiretroviral drugs, they are not always used properly. Doctors oftentimes are unable to accurately diagnose HIV and to prescribe a suitable drug regimen for patients, and many patients only take their drugs intermittently—which actually only leads to resistance to the drugs, making future applications even less effective. Some patients stop using the drugs altogether because of the side effects, without truly understanding the inevitable consequence. But they lose faith in the drugs after they failed to show immediate results.

 

Selling blood initially promised riches, but now, more than a decade later, it has produced the exact opposite—thousands of families across Henan have been left even poorer than before and experienced deep loss. Even worse, it has stripped away hope, as future generations inherit nothing but poverty and debt.

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AIDS Orphans and Children

 

Scores of parents have died, leaving behind children who have no capability to make a living for themselves. At the same time, the magnitude and scale of disease in villages exploited by blood collectors often means that even extended family have died or become too weak to take care of a child. The One Child Policy of China also makes older siblings a rare occurrence, leaving many children with no support network to rely on. In some cases, living relatives do take care of these orphans, but oftentimes they are sent to live in orphanages or group homes.

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Children orphaned by AIDS have access to less food, money, and medical attention than their peers within the same community. Many of them, having been impoverished from a young age, are severely stunted in their physical growth, and constantly suffer from hunger. Children living in state-provided care, such as orphanages, actually tend to fare better than those that live with relatives. Usually relatives are not as well equipped to take on the burden of caring for an extra child, and the government allowance for AIDS orphans, provided under the “Four Frees, One Care” policy, is lower if they live with a relative than if they live in an orphanage. Relatives are often struggling to provide for themselves before having to take care of additional children.

 

Stigma against HIV persists even when it is commonplace, affecting AIDS orphans in particular. Children have been prevented from attending school if their parents were affected, regardless of the child’s own HIV status. It has also made adoption of AIDS orphans by non-family members incredibly rare, based on a fear that the child may infect others.

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Dreams of a better future are elusive for these children, most of whom are forced to work instead of go to school, and who also bear emotional scars from witnessing the suffering and death of their parents. AIDS orphans not only have fewer material goods, but also less life satisfaction, less desire to study, and a higher propensity for depression.

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Furthermore, there are children who have HIV themselves. While the Chinese government freely provided drugs and information campaigns to help prevent the transmission of HIV from mother to child, institutional barriers prevented them from being completely effective. These children are often not told they are carriers.

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Stigma Surrounding HIV

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Misinformation about HIV was one of the largest contributors to the eventual spread of the disease in Henan. At the time at which blood collection stations were introduced, it was generally thought that HIV was a foreign disease linked to immoral or abnormal sexual conduct, or capitalism. On that basis, it was believed, at least by the general public, that China was at no risk of the disease. In fact, importing blood products was banned in China, leading to the necessity of local blood collection stations. As the practice became increasingly popular, it became difficult to ensure that every station was met health standards.

 

The stigma that HIV was the product of sexual immorality meant that villagers felt no danger of contracting it. It also further prevented proper education about HIV—the massive negative perceptions surrounding it led the government to be anything but open with research and statistics about HIV in China.

 

Role of Government

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Government action has played a substantial role in every step of the creation and persistence of AIDS villages. The government has been incredibly dynamic and has shown major ideological shifts throughout the stances they have adopted on HIV in China and in Henan in particular.

 

The stigma that surrounded HIV, a product of both the culture and government of China, was instrumental in the policy decisions that led to proliferation of blood collection stations. The fact that the misinformation surrounding HIV was officially recognized and endorsed by the state goes great lengths towards explaining why rural villagers held those beliefs as well. This effect was echoed in the efforts of local officials to promote blood collection, which powerful institutions often supported. Some individual officials personally profited from the sale of villagers’ blood.

 

This stigma has not been completely resolved, and it is undoubtedly more convenient to blame the plight of HIV in China on the immoral actions of individuals than on the failures of the government. Even as the Chinese government becomes more open with discussing HIV, it largely focuses on cases spread by contact with prostitutes, illicit drugs, or homosexual sex.

 

While at the very beginning of the lucrative blood collection trade the connection between blood transfusion and HIV was not well known, it should be noted that the presence of HIV was known to Henan authorities by 1995, and that blood collection—even state-endorsed blood collection—continued for some years after that. Information was actively suppressed, and activists who attempted to spread knowledge of HIV and sexual health were prevented from doing so. When the correlation between HIV and blood donation became too strong to ignore, and it was finally shut down by the government, residents were not always told why the blood collection centers were closed.

 

There have also been extensive government cover-ups of what happened in Henan in the 1980s and 1990s. The government at the local, state, and federal level has been denied involvement, contradicting civilian accounts. In refusing to acknowledge their own role in the spread of HIV in Henan, the government has yet to punish any officials or doctors who were involved with the proliferation of blood collection stations. Families have received no direct compensation for the crimes that have been committed against them—they have access to the same AIDS-related care that all sufferers of HIV have, ignoring the unique circumstances of their infection.

 

Officials have systematically denied claims against them, which is surprisingly easy to do when most of the affected villages are largely uneducated, have few pathways to the outside world, and lack economic capital. One protester said: “To them we are like bubbles. They know if they turn away and ignore us, we will soon pop and be gone.” It is notoriously difficult for citizens to engage with their government when, realistically, without outside aid they carry little political impetus.

 

Outside aid, however, is systematically denied. Officials have also denied humanitarian aid from numerous NGOs, refusing to allow outsiders into villages ravaged by HIV. They have also obstructed research on HIV. Some claim that these are efforts made to ensure that no data is released that would contradict official statements surrounding the state of HIV in China.

 

Information is also tightly controlled, with journalists often being turned away from villages, with explicit instructions being given out to locals not to take part in interviews. Surveillance is widespread and powerful. Books on the subject of HIV in Henan are banned, and protestors are regularly escorted away from government buildings or detained. It should be noted presently that all Chinese sources used in writing this article write that the high rates of HIV in Henan are due to illegal blood collection booths operating independently of the government.

 

As international pressures mount, China has begun to have more public discussions about the state of HIV throughout the country. Unfortunately for the people of Henan, local officials have yet to be held to the same level of accountability, and they continue to lack the ability to effect change on their own. While some widely publicized villages, such as Wenlou, have received greater funding and medical help as a result of international attention, villages that have yet to be featured so widely continue to suffer silently.

 

There are grave impacts of the oppression by the government beyond the direct harms of ignorance and denial of resources. The constant mistreatment of the people of Henan has undoubtedly left them feeling disenfranchised. They trusted the officials’ promises of safety, and received a debilitating disease instead. This could partially explain why many AIDS orphans are not properly registered with the government or why many people receiving free antiretroviral drugs fail to use them, believing them to be useless of harmful.

 

Recent Advances

 

While AIDS villages are, without a doubt, a tragedy, there have been some efforts made to relieve the suffering within them, both for the people infected with HIV and their family and friends who suffer by extension.

 

To combat people infected with HIV refusing to take their drugs, the central and provincial governments have hired individuals living in AIDS villages to personally spectate others take their medicine to ensure they are doing so correctly and routinely. By hiring someone already in the community, they allow the patients being watched to feel more comfortable, mitigating the disenfranchisement they may feel.

 

Advances have also been made towards cooperating with other institutions. Most of the information in this article was obtained thanks to the hard work of journalists, and while many of them had to covertly enter affected cities, some of them have been allowed by the government to see them openly. In general, the prevalence of security and secrecy has gone down; while the Chinese government maintains its lack of responsibility for what happened in Henan, NGOs have slowly been allowed to establish a greater presence in AIDS villages, as long as they don’t seek to spread or obtain information that could contest the country’s official statements.

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