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I. SUMMARY

People who are HIV-positive need emotional support. Many people, when they find out they are HIV positive, suffer very much and are very sad. They have many needs—psychological, medical, and legal—but many people just stay at home for years and years.¹

Zhang, a person living with HIV and an AIDS activist

In 1985, a foreign tourist visiting southeast China became the first person in the country to be diagnosed with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS).² Nearly two decades later, China faces what could be the largest AIDS epidemic in the world. Already, the virus has cut a devastating swath across the country, affecting at least 1.5 million men, women, and children. In fact, the numbers are probably much higher³— actual infection rates remain unclear in China, because local authorities have minimized the epidemic in order to protect external investment in local economies. During the 1990s, local authorities were also complicit in the transmission of HIV to hundreds of thousands or even millions of villagers through an unsanitary but highly profitable blood collection industry. Faced with such multiple local failures on the part of provincial and county governments, Beijing’s reluctance to act decisively in the AIDS epidemic continues to cost lives and cause incalculable suffering to those living with the virus.

As AIDS activist Zhang points out, persons living with HIV in China have urgent needs for health care, legal aid, and community support. Instead, widespread discrimination by state and private actors, and the lack of redress, are forcing many people with HIV/AIDS⁴ to live like fugitives. Their voices in this report, some of teenagers, tell of not only the horror of facing a painful and certain death, but also of facing that death alone, in squalor, with no one to bring them food or change their sheets, fearful to even show their faces to neighbors because of the risk of eviction. Having been fired from jobs, evicted by landlords, or worst of all, refused care by hospitals because of their HIV status, some try to mask their pain and despair with drugs—which in turn can hasten the spread of the virus to others. Stigma and discrimination are clearly fuelling the epidemic in China. As these voices tell us, China’s leaders must take concerted action immediately, or HIV/AIDS will destroy the lives of millions more.⁵

China has the capacity to combat AIDS. Despite a severely damaged national public health system and discriminatory hospital practices, some individual doctors and nurses have made extraordinary efforts to care for people with HIV. Behind the scenes, some senior policy makers are pressing Beijing to issue increasingly progressive-sounding statements on the epidemic and to undertake serious legal reform. A handful of small-scale pilot projects on the borders, the products of collaboration between some concerned Chinese officials and international nongovernmental organizations (NGOs), show what could be done. Yet in practice, Beijing has thus far done remarkably little. While the outbreak of severe acute respiratory syndrome (SARS) in 2003 led, after a fitful start, to the full mobilization of the state to bring that deadly disease under control, the more widespread and dangerous HIV/AIDS epidemic has been treated as a lesser priority. One obvious reason for the differences in China’s treatment of AIDS and SARS is economic: SARS, an airborne disease, directly threatened the health of foreign visitors and had a visible impact on China’s trade and tourist industry. Another is the official discourse surrounding the virus, which links it with people considered “expendable” in China’s march toward modernization: injection drug users, sex workers, men who have sex with men, and ethnic minorities.

Thus many people living with HIV/AIDS in China live in a health care vacuum without hospital care, antiretroviral drugs, or counseling. In Yunnan, Human Rights Watch discovered that the door to a hospital AIDS ward was actually closed and padlocked.

This locked door may in fact be emblematic of the experience of being HIV-positive in China, which is like encountering a series of locked doors. On revealing their status (or having it revealed for them), persons living with HIV/AIDS may find themselves rejected by their families and friends, cast out of their homes, and unable to find or keep employment. If they turn to hospitals to seek assistance, some find they are refused care, and many are unable to afford care even when it is accessible. There are few NGOs that offer care or other services to people living with HIV/AIDS in China. Those individuals who dare to identify themselves to others as HIV-positive and who try to band together to form their own support groups face repression and censorship. Unable to afford medicines and lacking access to basic information about what works, some people with HIV even band together in secret to hold their own drug trials, experimenting with unregulated remedies sold by street peddlers in back alleys, in a desperate attempt to stave off the virus.

These persons are suffering without resources, treatment, health care, and support services, but their suffering is not inevitable. The state, with the support of international agencies, donors and NGOs, could address these issues in China as they have in other countries.

Locked Doors highlights the importance of protecting the rights of people living with HIV/AIDS and those at risk of contracting the disease in order to combat the epidemic. It draws on fieldwork in Yunnan province, Beijing, and Hong Kong, as well as archival research, to document human rights issues related to China’s HIV/AIDS epidemic. Rights abuses documented in this report include:

the spread of HIV through unsafe state-run blood collection centers in the 1990s; the government’s failure to provide treatment or compensation to the overwhelming majority of those who acquired HIV directly or indirectly through those blood sales; and Beijing’s failure to prosecute responsible local officials;

restrictions on freedom of expression, assembly, association and the right to information of those living with HIV/AIDS and persons seeking to help them;

arbitrary detention of injection drug users;

discrimination based on HIV status by state actors, including government hospitals, clinics and government employees;

mandatory HIV testing in state facilities and violations of patient confidentiality; and

lack of access to treatment and other issues in China’s under-funded and problem-ridden health care system.

Though the basic facts are now widely known, Beijing continues to abet the local cover-up of one of the world’s greatest HIV/AIDS scandals: the spread of HIV through unsafe blood collection practices to rural blood donors. In Henan province in the 1990s, perhaps one million people were infected with HIV through shoddy practices at blood collection centers run by the local health department as well as illegal, underground blood collection centers. Infections occurred when the blood remaining after extraction of the plasma was combined and reinjected into the original donors. The motive of local officials was financial: they were trying to take advantage of the highly profitable global demand for blood plasma. Journalists, doctors, and AIDS activists who subsequently tried to reveal the truth were harassed, expelled from the province, or detained and interrogated by police.

Chinese government documents now reveal what many, including the Joint United Nations Programme on HIV/AIDS (UNAIDS),⁶ have long suspected: Henan was justone of seven central Chinese provinces where similar blood collection practices fuelled the spread of HIV/AIDS.⁷ The sheer percentages cited in these documents indicate potentially larger HIV prevalence in China than the state has yet acknowledged.⁸ In spite of the massive human toll, the national government has ignored calls for an independent investigation, compensation, and treatment for all the victims. To date no government official has been prosecuted for the scandal.⁹ This impunity for local officials’ cover-up of the AIDS epidemic is one cause of the lack of accurate epidemiological information nationwide, and likely led directly to similar cover-ups in the SARS epidemic.

Perhaps to avoid responsibility, perhaps as part of the government’s longstanding policy of censorship, which includes the suppression of “bad” news that otherwise might cause social unrest, the state has tried to control media coverage of the AIDS epidemic. While the state now permits positive stories about government AIDS programs, and some critical stories occasionally appear in the Chinese press, other journalists who write stories unflattering to state actors have been fired or intimidated into self-censorship.¹⁰

Stigma, fear and discrimination have been common around the world in the HIV/AIDS epidemic, but in many other places — including Hong Kong — people suffering the ravages of AIDS can form independent support groups and lobby for reforms, such as antidiscrimination laws and access to treatment. With few exceptions, this is not allowed in China.

China also estimates that 260,000 children¹¹ may be orphaned by HIV/AIDS by 2010;¹² although, again, these numbers are contested — AIDS activists and NGO workers in Henan estimate that as many as a million children in that province alone are or will become orphans as a result of the blood collection disaster.¹³ Many school-age AIDS orphans were forced out of school because they could no longer afford school fees, or because they must work and care for sick parents.

Mistreatment of and misguided policies towards injection drug users have exacerbated the problem. In response to an epidemic of drug use in impoverished border regions, police officers regularly sweep the streets of “social undesirables,” such as people suspected of drug use. Public security officials have the authority to consign a suspected user without trial to a prison-like forced detoxification center.¹⁴ Psychological and moral education in the centers is militarized, consisting of rote repetition of slogans, marching in formation, and repetitive drills. Former detainees and NGO workers familiar with the centers report overcrowding, poor sanitation, and inadequate medical care. In many, detainees are required to work without pay, producing goods sold by the prison. Detainees are tested for HIV without their knowledge and, perhaps most disturbing, without being informed of the results and given appropriate counseling on care, treatment, and prevention. This means that while the state is aware that a person is HIV-positive, the infected person is not; upon release he has no reason to seek necessary medical treatment or to alter his behavior (such as the sharing of needles or use of condoms).

Chinese national law and local regulations permit mandatory testing of many categories of people, in contradiction of international standards prohibiting non-consensual medical procedures.¹⁵ Employees at hospitals also admit they routinely test for HIV without the consent of those tested. NGO workers and others report that state facilities sometimes inform employers and family members of a person’s HIV status, increasing the person’s vulnerability to discrimination, and making many others less likely to test for HIV voluntarily.¹⁶

There have been a number of successful lawsuits by individuals against hospitals for illnesses acquired because of contaminated blood supplies, yet many hospitals remain unwilling to accept responsibility for the safety of their blood supplies. Some now require patients to sign waivers releasing the hospital from liability in case of the transmission of HIV or other diseases.

People living with HIV/AIDS also face many forms of discrimination in their daily lives. Perhaps most perverse is that some people with HIV/AIDS report being refused admission to hospitals by health care workers because of their HIV-positive status. Some were refused after unknowingly testing positive for HIV; others were refused categorically when hospitals actually locked their HIV/AIDS wards and barred all HIV-positive persons.

Other discriminatory measures are part of Chinese law. While national laws on marriage have recently been reformed, local regulations in many regions still allow authorities to refuse permission to marry to those with HIV/AIDS. People living with HIV/AIDS also face the threat of eviction by their families or villages or, in cities, by their landlords or neighbors. As there is no legal protection or recourse for victims of discrimination, these unredressed acts of discrimination also add to the stigma associated with AIDS. The fact that Chinese laws permit quarantine for testing or treatment also serves to reinforce the social stigma surrounding HIV/AIDS. Such laws effectively disseminate inaccurate information about the virus - that is, the idea that HIV can be transmitted through casual contact.

In the decades after the 1949 revolution, China made enormous strides in public health. The national health care system was a central benefit of the Communist Party’s cradle to grave protection of workers as part of its “iron rice bowl” employment policy. The dismantling of this system during the transition to a market economy has limited access to health care generally. It has had serious implications for both prevention and treatment of persons living with HIV/AIDS, whether for opportunistic infections or for provision of antiretroviral drugs. The spiraling cost of doctor’s examinations, hospital beds, diagnostic tests, and drugs, and the profit-driven nature of these services, has made appropriate medical care inaccessible to most people with HIV/AIDS. Weaknesses in the public health care system have driven many living with the disease into an unpredictable world of backstreet clinics and unregulated, experimental remedies.

The combined effect of all these forms of public and private stigma and discrimination is to drive many people living with HIV/AIDS underground. Some flee from place to place with the constant threat of exposure as “carriers” of the “plague.” Unable to gain access to state services because they lack city residence permits, they are barely able to scrape together the means to purchase the vials of remedies sold by unscrupulous doctors and even street hucksters to “cure AIDS” until, finally, they huddle alone on their beds in rented rooms to wait for death.

“They call, they get tested, and they hide,” said Han, who runs a small-scale, local counseling service. “The life of an AIDS sufferer ... is a very lonely one.” ¹⁷

While the current picture is bleak, China does have the capacity to change its approach to HIV/AIDS, a capacity it began to display during some moments of the SARS epidemic in 2003. Given China’s high degree of control over state-run media, the country could combat social stigma and coordinate a national response to HIV/AIDS. China's government regularly demonstrates its ability get its message out about other topics, such as the banned religious group Falun Gong, its one-child policy, or its policy on SARS.

The SARS epidemic has shown both the old face of the Chinese political system, and a potentially new face. Beijing’s dark side was exemplified by its initial cover-up of the epidemic, and by its knee-jerk resorting to draconian measures developed during the AIDS epidemic, such as the jailing of “intentional transmitters.”¹⁸ But by firing the Minister of Health, the mayor of Beijing, and more than 100 health officials for covering up and under-reporting SARS infection rates, China has established new standards of public accountability. Recent statements that the Ministry of Health is drafting regulations to mandate accountability for officials who cover-up HIV/AIDS are very promising, provided they have the status of law and are strictly enforced.¹⁹ The challenge for China is to maintain and apply these standards to those who have been complicit in the spread of HIV, those who have covered up the AIDS epidemic, and to state actors who discriminate against people with HIV/AIDS.

Some national policies show sensitivity to the rights of people affected by HIV/AIDS, such as the national HIV/AIDS action plan.²⁰ The principles expressed in these policies could be codified in law and enforced by an independent equal rights commission, as they are in Hong Kong. Some areas of the country have already developed pilot projects and local regulations that respect and protect some key rights of people affected by HIV/AIDS, such as Suzhou.²¹ These could serve as models for larger projects in areas with even larger numbers of people with HIV/AIDS. Officials in some areas, such as Yunnan, have shown more tolerance for independent NGO activity on HIV/AIDS. This could be emulated in other regions of the country, as could some of Yunnan’s successful pilot programs. People living with HIV/AIDS in Hong Kong also point out that Hong Kong’s positive experiences with subsidized treatment, its vibrant NGO community, and its antidiscrimination ordinance could be studied in mainland China. Hong Kong AIDS NGOs have initiated pilot projects on the mainland, which could be expanded.

There have been some small signs of change in China’s discriminatory local regulations. In September 2002 the city of Suzhou passed regulations barring discrimination based on HIV status. In June 2003 Sichuan province began considering regulations that would reverse earlier discriminatory laws and permit people living with HIV/ AIDS to marry. In August 2003 Chinese media publicized the marriage of two people with HIV/AIDS in Sichuan.²² Individual, high-profile marriages such as this one could be translated into systemic change in Sichuan and elsewhere.

Another hopeful sign is China’s 2003 application to the Global Fund to Fight AIDS, Tuberculosis and Malaria (or “the Global Fund”), which acknowledges some facts for the first time. In the application, China’s government admits the spread of HIV through unsafe blood collection centers in seven provinces, including Henan. The application admits that it is “not uncommon” for hospitals to turn away AIDS patients. It states that “stigma has hampered the social and political response” to HIV/AIDS.

Perhaps most important, as an implicit statement that the provision of better medical care is in China’s national interest, the application states that a government survey shows that catastrophic illness, such as AIDS, is a major cause of poverty in China. The application states several times that the hardest-hit areas are rural and poor with a weak infrastructure and health care system, asserting

One of the major challenges in assuring the service delivery of HIV/AIDS care and treatment in a rural setting is the dysfunctional state of the existing rural health service across China, especially in those poor areas.²³

China has asked the Global Fund to support a plan to bring care and treatment, including antiretroviral drugs, to 50,000 persons living with HIV/AIDS across the seven provinces. The move also signals a potential growing openness by Chinese leaders to proposals for universal care and treatment for people with AIDS.

It is unclear if the Global Fund application represents a new and more enlightened view of the HIV/AIDS problem by Beijing, the views of a minority in China’s public health system, or mere rhetoric in a grant proposal. The test will be whether China ends its discriminatory laws and practices, tolerates public discussion and debate on the subject of HIV/AIDS, allows independent support and advocacy groups to form, provides treatment and compensation to blood scandal victims, and treats HIV/AIDS as a genuine public health crisis requiring a serious and coordinated response, rather than an embarrassment to hide. Moreover, official corruption is a serious hindrance to effective delivery of funds and care to rural persons affected by HIV/AIDS. In Henan, allegations of misuse of funds intended for AIDS care has led to a number of protests and demonstrations.²⁴ The grant proposal fails to propose how to address this problem.

In October 2002 U.N. Secretary-General Kofi Annan made a visit to China, where he issued a plea for action against the AIDS epidemic. Speaking at Zhejiang University, Annan said:

There is no time to lose if China is to prevent a massive further spread of HIV/AIDS. China is facing a decisive moment.²⁵

Much time has already been lost since Annan’s plea. It is time for the Chinese government to make the fight against AIDS a central and unambiguous plank of public policy, one that embraces people living with HIV/AIDS as victims of an illness rather than the objects of public scorn. The full weight of the Chinese public health system, from public education campaigns to appropriate treatment, must be activated, for the sake of sufferers and of Chinese society as a whole.

As one Hong Kong resident living with HIV/AIDS observed, China has far greater economic resources today than it did when the first case of HIV/AIDS was diagnosed in 1985. New cities, such as Shenzhen, have sprung up in the midst of rice fields. Beijing has become a global metropolis. Kunming, where research for this report was done, has transformed itself from a sleepy backwater into a bustling cluster of new hotels and businesses, its streets clogged with daily traffic jams. China’s economic wealth is greater than ever before. With or without assistance from the Global Fund, this emerging political and economic superpower is capable of doing more.

Since 2002 China’s leaders have emphasized the need for the international community to assist in the fight against AIDS. Another great resource in the fight has been left untapped by China: the expertise and leadership of people living with HIV. In other countries, people living with HIV/AIDS have been great allies and often leaders in the struggle against the epidemic. Instead of driving them underground, the state should guarantee their basic rights so that they can come forward and help to lead the fight against HIV/AIDS.