Stigma and Discrimination Fuel Spread of AIDS in China
by Elizabeth Williams
Originally published in ABC News, January 23, 2007
In recent years China has made bold strides in its response to HIV/AIDS. But until it owns up to past mistakes, encourages and supports civil society involvement, and proactively deals with the serious challenges of stigma and misinformation, cases of HIV and AIDS will continue to rise, giving truth to predictions that by 2010, China could be home to over 10 million infected with the disease.
After years of denial, China's leadership now serves as a model for the region, with Premier Wen Jiabao, President Hu Jintao and Vice Premier Madame Wu Yi all speaking out publicly and visibly on the AIDS emergency. Newly launched public service campaigns are attempting to increase awareness and slow the spread of the disease. The Beijing government has initiated bold and creative programs to provide care and treatment. Innovative efforts from civil society and members of the private sector are beginning to fill in gaps that the government cannot, and new resources from public and private donors are supporting model programs for prevention, care, and treatment.
Yet there are warning signs that all is not well, and, in fact, that worse is yet to come. While it is true that there has been a quiet emergence of non governmental organizations (NGOs) in China, the ability of these NGOS and advocates associated with them to progress and develop has been less than successful, particularly in the area of HIV/AIDS. Last year for example, two prominent AIDS activists, Wan Yan Hai and Hu Jia, were each held separately for questioning. Mr. Wan was detained in advance of a conference he was organizing to help infected people with their legal rights to treatment and non discrimination. Mr. Hu went missing after he and a group of others went on a hunger strike to protest government treatment of civil rights campaigner Yan Maodang.
As a recent article in the Economist points out, China's refusal to openly discuss and address the practice of selling (tainted) blood in Henan province is a growing issue. In most cases, peasants were encouraged by local officials to sell their blood, but were not told of the enormous risk. There is evidence that this practice continued even as doctors and officials became aware of the problem.
To date, not one official has been held accountable and there is no indication that this will change. Victims are under constant pressure to stay quiet. The international organization Human Rights Watch (HRW) has documented the level to which Henan officials repeatedly banned international and local journalists from adequately reporting on the epidemic, harassed doctors, and blocked access to the very AIDS organizations offering necessary services. For HRW, the answer to why anyone would cover up such a vast epidemic was simple: "Covering up the spread of a stigmatized disease like AIDS might help to ensure that investment continued to pour into impoverished provinces like Henan. The Henan blood scandal sent a clear message to other local officials: if you have an epidemic, cover it up, and you'll be rewarded."
In part because of a lack of transparency and accountability, stigma and discrimination continue to fuel the spread of AIDS in China, and hinder the government's ability to respond to it. This unfolds in Henan most tragically amongst the growing population of AIDS orphans.
In some villages today, over 40% of the adults either have died of AIDS or are HIV positive, leaving behind tens of thousands of children without parents. These orphans, most of whom do not have HIV/AIDS, run the risk of growing up uneducated and vulnerable. It is here that some of the most admirable and effective NGO activities are emerging. An example is the Chi Heng Foundation, which is working with local communities in Henan to put AIDS orphans back into the local education system. Collaborating with the school system, Chi Heng sponsors their education and provides support and vocational services. Because of its non-confrontational and results driven approach, Chi Heng has enrolled over 4000 children in the program. Recently the Chi-Heng Foundation has partnered with the Clinton Foundation to provide life-saving treatment to the small percentage of these children who have the disease.
Yet there are problems. The growth of the problem and the spread of AIDS have outpaced the progress made. Like many other NGOs, Chi Heng's work is impacted by lack of sustainable funding and capable human resources. But the challenges go far beyond financial and human capacity building. As hauntingly portrayed in the documentary The Blood of Yingzhou District which follows the life of Gao Jun for a year after the death of his parents, fear of infection and ostracism runs high. For Gao Jun's uncles, left with their nephew, the choices are difficult. The older uncle's dilemma: if he allows his children to play with Gao Jun, who is HIV-positive, they will be ostracized by terrified neighbors. The younger uncle's dilemma: so long as Gao Jun remains in the house, the young man may not be able to find a wife. And so they give Gao Jun off to a kind stranger, abandoning him and his care to others.
China's leaders claim to be dealing with the challenges presented in Henan. While many warn of the dangers of an independent civil society, others tentatively recognize that the government cannot deal effectively with HIV/AIDS without contributions from advocates and civic organizations. Likewise, government leaders will be the first to talk about stigma and discrimination and the need to combat it. However, until China owns up to its own mistakes, and improves open communication about both the past and present of this epidemic, it will continue to sabotage its efforts to respond to it, thus setting back its rise as a global leader in the 21st century.
Elizabeth Williams is Acting Director for the Asian Social Issues Program at Asia Society.