In the ’90s, a gynecologist named Gao Yaojie exposed the horrifying cause of an AIDS epidemic in rural China — and the ensuing cover-up — and became an enemy of the state. Now 85, she lives in New York without her family, without her friends, and without regrets.
The enormous brick fortress in West Harlem was built in the mid-1970s as a visionary housing project, a new model for an affordable, self-contained urban community. Today, on a balmy September afternoon, it is a low-income housing compound lined with security cameras, guards, and triple-locked doors. A few drunks shouting at nobody in particular linger outside. Pound for pound, though, the most dangerous person living here may just be a diminutive 85-year-old Chinese grandmother dressed in a stylish purple sweater set with black leopard spots sent by her daughter in Canada.
This is not a slum. Neither is it where you would expect to find an internationally known human-rights warrior living out her golden years. In her one-bedroom apartment, Dr. Gao Yaojie — known to many as “the AIDS Granny” — moves with great difficulty through her tidy clutter and stacks of belongings. In the small kitchen, she stirs a pot of rice and bean porridge, one of the few things she can digest. She lost most of her stomach in surgery after a suicide attempt four decades ago and suffered multiple beatings during the Cultural Revolution.
A large bed where Gao’s live-in caretaker sleeps overwhelms the living room. In Gao’s bedroom, two twin beds are piled with stacks of books, photos and quilts. Her desk is heaped with papers, medications, and yet more books. Gao’s computer is always on, often clutched to her chest as she lies working in bed.
“I left China with one thing in each hand,” Gao says to me in Chinese. “A blood-pressure cuff to monitor my high blood pressure and a USB stick with more than a thousand pictures of AIDS victims.”
Before she agreed to meet me at all, she set rules via email: There would be no discussion of China’s politics, the Communist Party’s future, or the myriad issues that concern other dissidents. These are inexorably tied to her own life, but Gao does not want to be known as a multipurpose Chinese dissident. A lifetime of looking over her shoulder for danger has left her wary. She never learned English.
“I seldom see anyone,” she says. “Many people from China are very complicated. I don’t know what kind of intentions they have. I see them as cheating to get food, drinks, and money. They don’t really do any meaningful work.”
Gao believes she is watched here, just as she was in China for so many years. Given China’s well-documented pattern of stifling critical voices abroad, it’s impossible to rule out that someone is monitoring or harassing her, even in Harlem.
Money is tight. She had a fellowship through Columbia University for her first year in the U.S. Now she gets by on private donations that cover roughly $35,000 a year in expenses, the largest of those being her rent at Riverside. She has a few teeth left and can’t afford dental work.
She spends her days in bed, sleeping, writing, researching online, and obsessively analyzing what she witnessed in China in a lifetime that bridged tremendous tumult. For hours, she clicks away on her keyboard, emailing contacts back home for information and putting final touches on her newest book. She learned to use a computer at age 69.
This will be Gao’s 27th book and the ninth to chronicle China’s AIDS epidemic, a public health catastrophe that decimated entire villages and put her on the government’s enemy list. “You wouldn’t understand the earlier books, they were too technical,” she says, flashing a near-toothless grin.
“Although I am by myself, appearing to be lonely, I am actually very busy,” she says. “I am turning 86 soon and will be gone, but I will leave these things to the future generations.”
Her unplanned journey from Henan province to Harlem began 17 years ago, six months after she retired as a gynecologist and professor at the Henan Chinese Medicine University hospital in Zhengzhou. She went from being a retired grandmother to China’s first and most famous AIDS activist, and became such a thorn in the side of the regime that she eventually fled to New York for safety, away from her family and everyone she knows.
She turns to her computer and pulls up a photo of a gravely ill woman with an incision up her abdomen. Gao did not set out to become a dissident.
“I didn’t do this because I wanted to become involved in politics,” she says. “I just saw that the AIDS patients were so miserable. They were so miserable.”
In April 1996, Gao, then 69, was called from retirement to consult on a difficult case. A 42-year-old woman, Ms. Ba, had had ovarian surgery and was not getting better: Her stomach was bloated, she had a high fever and strange lesions on her skin. She grew sicker and her doctors were stumped. After finding no routine infection or illness, Gao demanded an AIDS test for the young mother.
Gao knew from her work that AIDS had entered Henan, the heartland Chinese province. Yet her colleagues scoffed: How could a simple farmer have AIDS? China had only a handful of confirmed cases. The government said AIDS was a disease of foreigners, spread through illicit drugs and promiscuous sex.
Gao insisted on a test. The results came back; Ms. Ba had AIDS. Her husband and children tested negative, which puzzled the doctors further. The patient was not a drug addict nor a prostitute, so Gao began to investigate. She determined the source was a government blood bank — Ms. Ba’s post-surgical blood transfusion infected her with HIV. “I realized the seriousness of the problem,” Gao later wrote. “If the blood in the blood bank carried the AIDS virus, then these victims would not be a small number.”
With no treatment available, Ms. Ba died within two weeks. Her husband, Gao remembers, spread a cot on the ground in front of her tomb and slept there for weeks in mourning.
Witnessing his grief launched Gao on a relentless campaign. She began investigating AIDS in Zhengzhou and nearby villages, conducting blood tests, compiling data, and trying to educate farmers about the risks carried by blood donations and transfusions.
Over months and years, her research into the epidemic took her across much of rural China. What she found astounded her: villages with infection rates of 20, 30, 40% or more; whole communities of AIDS orphans, zero treatment options, and little awareness of what was sickening and killing a generation of farmers. Worse, the population did not know how the disease spread. The numbers of how many were infected and died remain secret, the officially released data almost universally believed to be far too low.
Gao had finally found the cause. “Even now, the government is lying, saying AIDS was transmitted because of drug use,” she says. “The government officials were very good at lying.”
The breadbasket of China, Henan is cut by the Yellow River and its seasonal, devastating floods. Through generations of extreme poverty, it developed a reputation as a place where people lie, cheat, and steal. In reality, rural Henan is not unlike Middle America, with its sweeping, open pastures, peaceful landscapes, and hardworking people. But among the poor agrarian landscape, dark and deadly ideas for amassing wealth germinate. In the early 1990s, emerging from several decades of manmade and natural disasters, floods, and famine, its best resource was people, nearly 100 million living in a China operating under the notion that “to get rich is glorious.”
Among the cruelest of these schemes was the “plasma economy,” a government-backed campaign from 1991–1995 that encouraged farmers to sell their blood. Fearing the international AIDS epidemic and viewing its own citizens as disease-free, China banned imports of foreign blood products in 1985, just as disease experts began to understand HIV and AIDS were transmitted through blood.
Modern medicine requires blood, and importantly, blood plasma, which makes albumin, an injection vital after surgery and for trauma victims. It is also used in medications for hemophilia and immune system disorders. And plasma is a big-money business — and a deeply controversial one — worldwide. Giving plasma is more time-consuming and painful than donating blood, so fewer people contribute for free, and it attracts people who need quick money: In the 1990s, inmates in United States prisons were pulled into a plasma donation schemes; today, Mexican citizens cross into the United States to border town plasma collection stations.
Though the donors of Henan got a pittance for their blood, middlemen grew relatively wealthy on what was believed to be a pure, untainted plasma supply. Plasma traders worked to convince Chinese people traditionally opposed to giving blood — thought to be the essence of life — to sell it. Villages were festooned with red sloganeering banners: “Stick out an arm, show a vein, open your hand and make a fist, 50 kuai” (at the time, about $6), “If you want a comfortable standard of living, go sell your plasma,” and “To give plasma is an honor.”
Local officials in some places went on television, telling farmers that selling plasma would maintain healthy blood pressure. (It doesn’t.) Traders pressured families, especially women. Since females bleed every month, the cracked reasoning went, they could spare a few pints for extra income.
Though some villages were spared, often thanks to foresight of skeptical local leaders, Henan’s poorest places, especially those with bad farmland, jumped into the blood trade with gusto. Henan officially had around 200 licensed blood and plasma collection stations; it had thousands of illegal ones. Collection stations were overwhelmed. Needles were reused time and again, as were medical tubes and bags. Sometimes, stations sped up the process by pooling blood, unknowingly re-injecting people with HIV-tainted red blood cells.
The system became a perfect delivery vehicle for HIV. Thousands upon thousands of the farmers who sold plasma to supplement meager earnings left with a viral bomb that developed into AIDS. In the years before education and life-extending antiretroviral drugs, it was a death sentence.
As Gao made her discoveries, another doctor, Wang Shuping, was finding the epidemic further south in Henan. Both tried to get provincial health officials to act, to warn people about the risk of AIDS via blood donations and transfusions, and to shut down the system. Both say their bosses and government officials told them to keep quiet.
For several years, Gao, Wang, and other doctors spoke out, but the scandal was hushed up. When people started getting sick and dying en masse, the epidemic became harder to hide.
As soon as she began making her discoveries, Gao started giving public lectures, printing AIDS education pamphlets for villagers, and speaking to the press. Still, local officials managed to keep the news contained for a few years.
By 1999, some brave Chinese investigative reporters started writing about the plasma economy and AIDS epidemic. In 2000, international media seized on the story, and Gao became a favorite media subject, seemingly unafraid, always willing to provide detailed statics and talk about what she had found in the hidden epidemic.
Gao and the other doctors finally convinced China to ban plasma-for-cash programs and shut down unlicensed blood collection centers, but the damage was already done to thousands infected with HIV and hepatitis. (And despite the reforms, smaller illegal plasma operations still continued to pop up in rural villages.) This was not without pushback: Gao was threatened, blocked from speaking, had her own photos of AIDS victims confiscated, and believes her phone was tapped for years. Then there were the young men who followed her everywhere, forcing her to sneak out to do her work in rural areas under cover of night.
Gao continued to work to educate rural people about the disease and push for legal rights for victims. She inspired dozens of young volunteers, like the activist Hu Jia, to travel to Henan to donate money, food, and clothing over the years. But as the government tightened its controls and increased threats, volunteers stopped going. Gao, targeted more than most, kept sneaking in. She traveled undercover, visiting families and orphans and passing out her pamphlets.
Her charity embarrassed local officials who weren’t doing the job, and several became enraged. In one particular AIDS village, Gao learned the mayor had put a 500 yuan ($82) bounty on her head. Any villager who caught her in town and told police would get the huge sum. In all the years she visited, donated, and brought journalists in to investigate, Gao says, “they didn’t even try to catch me, they didn’t want to turn me in.”
Gao focused her attention, and her own family’s bank account, on the AIDS orphans, chastising the government to admit what had happened and make reparations. For that she became a target, as did those who accepted her gifts. Local officials wanted credit for helping AIDS victims, though according to her, most did very little.
“I gave them money,” she says, nodding toward a photo of a young woman. “She sold blood at age 16 and died at 22. I gave her 100 kuai ($16). If you gave them money and other things, they had to say it came from the government; they would have to thank the Communist Party.”
China has never provided a full accounting of the infection rate and death toll from the plasma disaster in Henan and surrounding provinces. Low estimates say 50,000 people contracted the virus through selling blood; many more sources put the number at at least 1 million. Another million may have contracted HIV through transfusions of the contaminated blood. Gao believes as many as 10 million people might have been infected, but she is alone in that high estimate.
China recently acknowledged AIDS is its leading cause of death among infectious diseases. In 2011, a joint U.N.–Chinese government report estimated 780,000 people in China are living with HIV, just 6.6% of them infected via the plasma trade, in Henan and three surrounding provinces. The real numbers are subject to debate and almost certainly higher, say global health experts. That figure also includes China’s original, larger AIDS epidemic that entered from Burma into Yunnan province along the drug trade route in 1989, about which the government has been much more open. There is no way to trace how many of China’s acknowledged AIDS cases are linked to the Henan plasma disaster. This is not an accident.
“You understand the situation?” Gao asks. “One thing is lying and the other is cheating. Fraud. From top to bottom, you cannot believe in government officials at any level. Cheating, lying, and fraud are what they do.”