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March 16, 2007
by Regan Hofmann
It’s a rainy March morning on Manhattan’s Lower East side, but the 36 HIV positive
Fresh graves in Henan
residents of Housing Works’ Cylar House (many of whom would otherwise be in inadequate shelters, or out on the streets without its roof over their heads) are bright with anticipation. They are about to meet one of the AIDS world’s modern heroes, an 80-year-old woman who is risking her life to help HIV positive people in China—most of whom could not even dream of a facility like Cylar House, which the U.S. Department of Housing and Urban Development has designated a “special project of national significance.” If you have AIDS in rural China, the only structure likely to be built over your head is the ritualistic triangle of dirt covering your above-ground grave.
Dr. Gao Yaojie
The Cylar residents’ honored guest is Dr. Gao Yaojie, a gynecologist and outspoken AIDS activist known for championing the exposure of government-supported blood plasma buying programs in the mid-1990s that led to the HIV infections of tens of thousands of poor Chinese farmers. She has come to the U.S. to collect a Global Leadership Award granted to her by the Vital Voices Global Partnership, an international women’s group, for her work in human rights. Since discovering firsthand the effects of her country’s HIV-contaminated blood supply in 1996, Gao has dedicated her life to producing and disseminating HIV-prevention materials and treating those already infected. She has visited more than 100 villages to treat more than 1,000 patients in the AIDS-ravaged countryside of Henan Province; she has self-published and hand-delivered prevention materials throughout the countryside of central China. As important as her work in the field are her efforts to tell the world what is happening in China. While the country is beginning to address its AIDS epidemic on a national level, tolerance for grassroots activists like Gao speaking about how local government is mishandling the spread of HIV is another matter entirely.
Gao’s efforts to publicize what she claims is an ongoing crisis—a blood-borne AIDS epidemic—have jeopardized her own health and safety; according to accounts detailed on her blog, she has been trailed and harassed as she travels to administer care and education to those affected by AIDS. She writes online that local governments pay people to tell them if and when she has traveled to a village. When she attempted to travel to the U.S. embassy in Beijing on February 1, 2007, to procure a visa for travel to America to collect her Vital Voices award, she was reportedly put under house arrest by local authorities in her hometown of Zhengzhou. Susan Stevenson, a spokesperson at the embassy, confirmed in a New York Times article that ran in the International Herald Tribune that Gao missed her appointment. In the same article, written by Jim Yardley, Gao’s friend, Hu Jia, said that Gao’s phone had been cut off. Wenchi Yu Perkins, Human Rights Program Director of Vital Voices, claimed in an interview with Radio Free China that Chinese officials placed Gao under arrest to stop her from saying something to the media that might make them look bad.
Informed that Gao would not be permitted to travel to America to collect her award, the honorary co-chairwoman of Vital Voices, former first lady, senator and current presidential candidate Hillary Rodham Clinton wrote to the Chinese president Hu Jintao and Premier Wen Jiabao. China’s ambassador to Washington, Zhou Wenzhong let Clinton know that Gao had been cleared to travel to the U.S.
Perkins says, “We wanted to honor Dr. Gao for her extraordinary contribution and courage to promote social justice and protect the rights of AIDS patients in China. Her commitment to helping the most disadvantaged AIDS patients, who often experience severe discrimination in society, is an inspiration to the whole world.” Perkins has also said that, “I think the [Chinese] government realizes that having Dr. Gao come to the U.S. to receive this prestigious award is only good for China.”
“I would rather meet Dr. Gao than any president or king,” says Housing Works president and founder Charles King. “She is a real hero.”
Down in the lobby of Cylar House, the elevator doors open, and a diminutive woman in a black pantsuit bearing a giant red Chinese symbol over her heart emerges. Gao is making her way through the state-of-the-art facility, which has a full-time medical staff that ensures that residents have access to (and comply with) the latest HIV treatments. She has just visited Cylar House’s upper floors, where she saw simple bedrooms that would be considered luxurious by Henan’s HIV-positive population, many of whom spend their last days on straw-covered floors. Gao also saw Cylar House’s art therapy center, a room whose walls are strewn with the residents’ colorful creations (she removed a paper chain of origami animals and draped it around her neck), and lounge areas accented with glowing fish tanks. As she toured the building, Gao nodded, opened her eyes wide and made exclamations of approval in Chinese. Though she doesn’t speak a word of English (she can converse in five other languages, including Russian), her reactions needed no translating.
Now downstairs to address Cylar’s residents in a community meeting, Gao peers intently through big, black-rimmed spectacles, at the people crowding into the common area. Despite language barriers and the fact that this is her first time outside China, she looks perfectly at home as she is shepherded to the front of the room by King, who himself lives at Cylar House. She settles into her seat between her translators, Crystal Gao (no relation) who has traveled from Henan to help with translating Gao’s heavy Henan dialect in Mandarin, and Perkins, who will move the words from Mandarin to English. Gao looks out at the audience of people—white, black, young, old, men, women—who make Cylar their home. King introduces Gao, telling the audience that she was among the first to confront the burgeoning AIDS epidemic in China. The crowd applauds her wildly. In response, Gao bows repeatedly, alternately waving two small splayed hands, palms out, as if to say, “Enough, enough.” Smiling broadly, she applauds the people who applaud her.
A patient suffers alone
Gao speaks in loud bursts of Mandarin with a fierce determination, repeatedly stabbing the inside of her elbow with a crooked forefinger. As Perkins translates, it seems as though Gao is relaying her story of becoming an AIDS activist for the first time—and in a way she is. She has never had such a large and rapt western audience. She tells how she’s nearly single handedly fighting an epidemic that stemmed from the sharing of needles when blood was drawn from impoverished local farmers in Henan—farmers who, again and again, some on a monthly basis,
Farmers selling blood
sold their serum for quick cash, unaware of the dangers of infection. Many times, the serum was injected back into a patient’s bloodstream after the red blood cells had been separated from the plasma. “Most Chinese who have HIV live in China’s villages,” Gao says. “Most of the farmers dying of HIV are too poor to afford medical care. They have no idea how to prevent HIV infection. To this day, they don’t know what kind of illness they have. In the villages of the Zhumadian district, the people call AIDS ‘the strange disease.’ In Zhoukou, they call it ‘the nameless fever.” As she talks, heads around the room nod, and alternately, shake in disbelief.
Gao, who is HIV-negative, first encountered AIDS in a 42-year-old woman named Ba who came into Gao’s clinic in 1996 with strange symptoms. Called to Ba’s bedside to diagnose her distended abdomen, high fever and the strange purple stripes running down her body, Gao at first had no idea how to explain the woman’s condition; Gao had never seen AIDS firsthand. The stripes made Gao think of Karposi’s Sarcoma. Despite being told by a local hospital that only foreigners get AIDS, Gao did a blood test and discovered that Ba was HIV positive. The woman had received a transfusion of HIV-tainted blood from a national blood bank when she’d been operated on for a uterine tumor (Gao specializes in ovarian gynecology and gynecological cancers but did not perform Ba’s surgery).
No one else in Ba’s family was HIV positive. Gao was surprised to learn that Ba hadn’t transmitted the virus to her husband—or vice versa. This made Gao wonder about the source of the infection and whether the disease, which she knew to be contagious, was preventable. She wondered if Ba had received HIV from the national blood supply, and if so how many others might be affected. She began moving about the countryside, only to discover that Ba’s was far from an isolated case.
Proof of injection sites
That fall, Gao began writing and printing AIDS prevention materials at her own expense. Gao had little money. Using her own pension funds and small donations from the Henan Museum of Culture and History and the Song Qingling Foundation, she produced 800 copies of a newsletter, “Knowledge of HIV Prevention,” which she distributed on December 1, 1996. World AIDS Day, to people at Zhengzhou’s long-distance bus stations, asking them to take copies to people in their local villages.
Since the mid-’90s, Gao has distributed more than 15 issues and 530,000 copies of her newsletter. She has also self-published a book, Prevention of AIDS and Sexually Transmitted Diseases. Three hundred thousand copies of it have made their way to the people of China. She lives only slightly more comfortably than they do; she has no heat in the winter. She has received additional funds from other humanitarian awards and from speaking engagements—all in all, about 1 millions RMBs, about $130,000 U.S. dollars—but has given nearly every penny of it back to her cause. Why is she so selfless? “All the money I’ve gotten is for AIDS, not me,” she says. “Many people don’t understand me,” she tells her listeners at Cylar House. “They say I am wasting my time.”
King opens the floor to questions. Hands jut up in the air.
“What can we do for you?” asks one resident. She stares at the man who posed the question, surprised and grateful for his inquiry. Then her hands move rapidly, her finger pokes at her elbow again and she punctuates her words with emphatic thrusts of her clenched fist. Perkins translates: “Dr. Gao says the best way to help her is to tell the world about what is happening in China.”
The New York Times broke the story of tainted blood and shared needles and the resultant spread of AIDS in Henan in 2001. Since then, accounts in the international media, or, rather, a lack of them, have led many around the world to believe that China’s AIDS epidemic is well under control. But while the national Chinese government has recently made overtures toward addressing the problem of AIDS, its work does not yet reach into rural areas. In April 2006, the Ministry of Public Health drafted the “Program for Reforming the Blood Plasma Collection Stations”—an endeavor designed to privatize the government-run collection stations. By separating the buyers and sellers of blood products, the Ministry hoped to end opportunities for undo influence between collection stations and the government-run hospitals purchasing their products. But according to Gao, this process is not complete. United Nations officials were permitted into China in 2006. Though the Chinese government claims a current HIV-infected populace of approximately 650,000 people, the UN estimates that by 2010, there will be more than 10 million people infected in China (the Henan province alone has a population of 100 million).
According to Gao, the scene is even more dire today than it was in the early ’90s. “The nature of the AIDS epidemic is quite different in China than in the West. The official reason that there’s so much AIDS in China is because of IV drug use and sex, but it’s actually more from blood transfusions,” she says. Even today? “The No. 1 reason for HIV infection in China is blood transfusions,” she insists. “[though] there is now also transmission through sex and drug use.” Gao claims that AIDS is still being spread through government-run blood stations in Shandong and other provinces, as well as through government-run hospitals throughout the country. “It’s illegal to sell blood in China today, but it is still happening,” she says. Two recently released films “Three Needles” and this year’s Oscar-winning documentary “Blood of the Yingzhou District” chronicle the phenomena.
China’s communist government has become willing, especially lately, to address the subject of AIDS. The Clinton Foundation and the Bill and Melinda Gates Foundation visited China to talk AIDS in ’06, and a L’Oreal-sponsored HIV-awareness and prevention campaign was recently launched nationwide. The Chinese government has also begun conducting medical research for AIDS and offers a free drug program. But according to Gao, there is allegedly still little work being done where it’s most needed—deep in the countryside where people have no knowledge of the HIV virus or how it leads to AIDS.
“It’s partly because of the official propaganda that there’s discrimination and stigma. The government’s been saying all along that HIV transmissions come from sex and drug use and that [the disease] is immoral, because they don’t want to acknowledge the blood scandal. China is very conservative and doesn’t want to be embarrassed,” says Gao. She has been collecting cases about recent infections resulting from blood given at hospitals in Henan, using pseudonyms for the more than 40 cases she has uncovered within the last few years. She maintains that these modern-day cases are but the tip of the iceberg in an ongoing blood-borne AIDS epidemic stemming from local government’s disregard of laws and regulations put into place to protect the country’s blood supply. In the China Business Herald, Yan Lieshan writes that Gao calls for the government to focus on “blood collection, transfusion and blood products, and not on pushing for virtue and self-control on the part of high risk groups, and wide distribution of condoms.” The same article reports on a notice dated January 22, 2007, and posted on the door of a Lianshan blood plasma collection station of the Baiyi of Guangdong province that read: “This company announced that plasma collection ends tomorrow, collection times will be announced later.”
The spreading HIV epidemic in China is also apparently a problem of economics. In China, there is great socio-economic disparity between those who live in the cities and those who try to eke out a living from the land in the rural provinces. Many farmers are too poor to eat. Selling blood products is extremely profitable. “With China being short of blood, how can illegal blood be controlled?" Gao wrote on her blog. “A poor person sells 800 cc of blood for 50 RMB, so how can the ‘blood head’ [an illegal vendor of blood] give up the tremendous profits that can be reaped?”
After her talk, Gao poses for a photo session in Cylar House’s garden, which is filled with a tall stand of bamboo. She stands and smiles with all who gather around her. Buried beneath her in the garden are the ashes of the center’s namesake and King’s former partner, Keith Cylar. It seems appropriate that Gao would stand above the resting place of another prominent AIDS activist, the man for whom Housing Works has named its own set of honorees, an international group who will receive their awards on April 12.
The tour moves on from Cylar House to another Housing Works wonderwork—its Used Book Café in Soho. A two-story movie set of a used bookstore with dark wood shelves, lyrical swerves of stairs and and bright coffee table book covers everywhere, the cafe—like HW’s other revenue stream, its thrift stores—sends a steady stream of cash to fund the agency’s work. The self-made publisher Gao seems awed by the endless rows of books as she sits down to lunch.
Her simple meal of noodles and tea tells a story of its own. In 1967, when Gao was 39, the Red Guards entered her OB/GYN clinic and ordered her to march with them in the Cultural Revolution. Unwilling to leave the mothers she treated and babies she delivered behind, she was beaten apparently to death and left in the hospital’s morgue. She hid among the dead, and spent the better part of the next year hiding in the morgue. As a result of the injuries from her assault and eating substandard rations, much of her stomach had to be surgically removed. To this day, Gao can eat only small portions of hot food.
Throughout lunch, Gao welcomes a slew of admirers who wish to pay her respects listening as a string of strangers tell the tale of how he or she came to be infected, and, in many cases, how Housing Works gave them a new lease on life. She meets Deborah Small of New York City and Gracia Violeta Ross Quiroga of Paz, Bolivia, two of this year’s four Cylar Award winners, and shares a moment with others recognized for similarly heroic work. After an exhausting several hours, she retires to her hotel. Later, she thinks of visiting the Statue of Liberty, but, ultimately, decides not to go as she fears she may get unwanted recognition. Though she has been granted permission to visit the U.S., she knows what the Chinese government thinks of her work—and that has led her to be cautious.
Several days later, Gao speaks with me at her New York hotel. She comes to the lobby and sits drinking her hot water and glancing intermittently at the TV as she feverishly tries to convey her story through two layers of translators.
On a rickety laptop, she shows me photos that she has taken in her travels to see the sick and dying throughout Henan: People withered and terrified, their bodies
Another AIDS casualty
covered with boils and lesions evoking early ’80s American media coverage of AIDS. Entire villages of people dressed all in white—the color of mourning in China—as they file out to the fields to bury another fallen AIDS patient. Children clutching pictures of their deceased parents to their chests. As she goes through each image, she indicates which of the subjects are dead (most of them) and who is still living (a few who somehow escaped infection; of these, a disproportionate number are small children). Orphans could soon be a large problem in Henan. Most people are too poor to feed themselves; feeding someone else’s child is just not an option. But those who are born HIV positive rarely survive for long. And the healthy often migrate to cities when they are barely teenagers to try to support themselves by working in factories. There are few orphanages in rural China.
The Vital Voices award is not the first Gao has received honoring her for her tenacious fight. In 2001 she was given the Jonathan Mann Award for Health and Human Rights. In 2003 she was awarded the Ramon Magsaysay Award for Public Service in
Manila, Philippines. And in 2003, China Central Television named her one of the “Ten People Who Touched China.” However, Vital Voices’ honor is the first the Chinese government has permitted her to receive in person.
Initially, when invited to the U.S., Gao had been pressured by local officials to sign a statement indicating that she was “unable to travel due to poor health.” New York Times reporter Jim Yardley wrote a story last month about her detention and how the government may have influenced her correspondence. Then came the letter from Clinton. Not long after, a photo appeared in the Henan Daily newspaper as well as other Chinese media showing Gao being visited in her apartment by Henan Province Vice Party Secretary Chen Quanguo, Henan Vice Governor Wang Jumei and Henan Province Communist Party Organization department head Ye Dongsong. They were shown presenting her with a bouquet of flowers and best wishes for the Chinese New Year. Gao’s house arrest reflects a historic pattern of harassment, especially in Henan, by local Chinese governments desperate to control grassroots activists who continue to beat the drum about the government’s role in the spread of HIV through the national blood supply. Wan Yanhai, another prominent AIDS activist, was detained in Henan and thereby prevented from holding attending an AIDS conference in Beijing.
Gao, outspoken and defiant of authority since her relatively privileged childhood (one of 12 children, she was raised by an aunt and uncle who were connected to the Qing Dynasty), is not afraid of being silenced.
As our interview winds down, I tell her that I need to go. With a determined frown, she grabs my hand and shakes my arm, pointing back to the computer. She is clearly not finished telling me her tale. We scour still more pictures, as she relays the fate of each individual shown. Suddenly, she pauses and stares outside. It is snowing—a wild little bluster of flakes tossed in every direction—and she smiles with childlike wonderment, allowing herself a moment with nature before returning to the tragedy of humanity.
“Are you afraid?” I ask.
“I am not afraid,” she says. She pauses, frowns, then speaks again. “If I compromise my principles, beliefs and values,” she says, “I will be an
Dr. Gao with a patient
embarrassment to heaven and to earth.” As if worried that something will be lost in translation, she stands and raises her tiny hands first skyward, then down to herdoll-like feet, to pat the ground. Then she defiantly barks out a final sentence. “You need to live for other people,” she says, “not for yourself.”
Photograph of Dr. Gao (second from the top) by Anna Moller. All others courtesy of Dr. Gao.