The first time I met someone in China dying from complications of AIDS, he had never heard of the illness that had already killed thousands of his fellow citizens.
This was not the early 1980s, when the world was still stunned and stumped by the mystery virus that causes AIDS and its swift and deadly spread around the globe. It was 2007, barely more than a decade ago, in a rural village on the Chinese border with Myanmar, ground zero of China’s first AIDS epidemic. HIV, the virus that causes AIDS, first entered China from Myanmar, borne by the needles that accompanied a persistent regional heroin addiction.
That ignorance among sufferers, in parts of the country where people were most likely to have it, reflected China’s unique and complex history with AIDS, one that involved a litany of scandals and government cover-ups that have left a lasting imprint of stigma and fear about HIV and AIDS — and discrimination.
That history helps explain a puzzling aspect of the news last month that a Chinese scientist claimed to have altered the genes of twin girls: Why had He Jiankui, a researcher with Southern University of Science and Technology, chosen to edit a gene in embryos that might protect the babies from AIDS? Other simpler and far safer procedures like sperm washing already exist to protect children from the virus when their fathers carry it, as in the twin’s case.
Wan Yanhai, a former officer with China’s Ministry of Health who later became an advocate for people with HIV and AIDS in China, said it’s important to recall that in the beginning of the crisis years, China deliberately framed AIDS as a disease of foreigners.
“HIV/AIDS was used as a political weapon in the 1980s and ’90s, especially after the failure of China’s democratic movement in 1989,” Wan said in an interview. “They used all these type of issues to attack Western cultures.”
Wan, who fled China under extreme government pressure for his advocacy work, like nearly every high-profile Chinese AIDS activist, now lives in the U.S.
He points to the particular peril of a homegrown AIDS epidemic in China’s heartland, Henan province, which began with a pay-for-plasma scheme run by local governments in the 1990s. HIV got into the donor pool and the virus spread like wildfire, leading eventually to crisis-level infection rates in parts of the region. According to Wang Shuping, the doctor who exposed the crisis, the central government in Beijing knew about the problem for several months before it shut down the system. Afterward, rather than contacting and educating potential victims, the government silenced whistleblowers like Wang and tried to quiet most information about AIDS. At the same time, on the other side of the country, the epidemic spread just as quietly among drug users and sex workers.
Said Wan: “On one hand, when people first heard they were infected, they [the government] used the stigma about AIDS to silence people with AIDS. They asked people not to tell. They said if you tell, there’s a negative outcome against your family.”
Back then, China was just beginning to roll out an ambitious plan to offer free government-sponsored antiretroviral medication to everyone infected with HIV, but the biggest stumbling block proved to be a sheer lack of knowledge about the virus and syndrome among the people who needed the drugs.
Today, the Chinese government estimates that around 500,000 people in the country, 1/100th of 1 percent of the population, live with HIV, roughly 300,000 of whom receive antiretroviral therapy. Some global health organizations put the number higher, however, and there’s never been a full accounting by China of people infected during the height of the crisis two decades ago. In his talk in Hong Kong, He Jiankui said he had personal experience with villages in China that have 30 percent infection rates.
It’s unclear whether He was speaking to HIV rates from the 1990s and 2000s, when this number was not unheard of in southern villages of Henan province.
“Today you can still see some high infection rates among certain migratory populations,” said Wan. “There are some areas where more than 10 percent of the population might be infected. It’s still a serious problem.”
In a China that’s much more mobile than 20 years ago, infection rates tend to cling to certain segments of the population — such as an increase in HIV among men who have sex with men — rather than geographic areas.
In other words, suspicion and mistrust remain around China’s official statistics about AIDS decades after the crisis peaked.
China does have anti-discrimination laws on the books, but it was only last year that a court found it unlawful for a company to discriminate against an employee for infectious disease carrier status. Workplace health screenings routinely test for HIV. And social taboos about the virus remain strong, linking it to poverty and poor choices.
A 2016 report from the International Labor Organization found that despite promises from the government, China still lagged in terms of ending discrimination based on HIV status by ending measures like mandatory testing for public servants.
“China’s great progress in HIV testing is enabling people to become aware of their HIV status and access appropriate antiretroviral treatment,” the report said. “Testing, however, can also lead to unwarranted discrimination against people living with HIV/ AIDS and be counterproductive in the protection of public health.”
Xi Chen, a public health researcher at Yale School of Public Health who studies China, said, “Discrimination happens in key dimensions of life, such as employment, health care, social networking and marriage.”
In the midst of this climate, it’s perhaps easier to understand how a concerned couple, with the male infected with HIV, might be inclined to sign a consent form for what was described as an AIDS-vaccine trial. He’s offer of free IVF, in a country where the procedure costs double a monthly average salary in large cities, might also have been enticing.
Right now, because the family’s identity is concealed and He is barely talking, it’s entirely unclear just how informed the parents were and why they chose to engage in such a radical experiment.
“This is possible, that stigma and implicit discrimination may make this process easier for parents who are really uninformed,” said Xi. “However, at least informed parents should know there are alternative (also much safer and more effective) ways that we can prevent parent-to-child transmission of HIV/AIDS.”