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Transcript of interview with Li Dan

BEIJING --Li Dan, a 27-year-old AIDS activist in China, is among this year's recipients of the Reebok Human Rights Award being announced today.

Li abandoned his doctoral studies in astrophysics when he became involved with China’s AIDS activism during the late-1990s. In June 2003, he set up a school for AIDS orphans in China’s central Henan province, where a botched blood donation campaign and a cover-up by corrupt officials resulted in a massive HIV epidemic.

Though irate authorities have detained Li and his colleagues numerous times and shut down their school, Li persevered in the campaign to mobilize Chinese society and pressure the government to acknowledge the problem of AIDS, provide assistance to patients and end discrimination toward them.

The annual awards by the Canton-based Reebok Human Rights Foundation honor activists aged 30 or younger who, in Reebok's words, "against great odds and often at great personal risk, have made significant contributions to the field of human rights through nonviolent means." Li will receive a $50,000 grant to support his work.

Li spoke about his work and the importance of the award in an interview with a Globe correspondent in Beijing. Here are excerpts:

Q: What does this award mean to you and China’s grassroots AIDS movement?

A: It will have a tremendous impact. If you remember, it was in 1995 that Wang Shu Ping [a medical researcher in Henan Province] exposed the high rates of AIDS in China, but she was kicked out of her job at the hospital and the issue was mostly ignored until 2001, when Elizabeth Rosenthal of the New York Times and Pierre Haski of [the French newspaper] Liberation, broke the Henan story.

That got a lot of media attention and [Chinese Premier] Wen Jiabao even went to the Henan villages. Then SARS [Severe Acute Respiratory Syndrome] happened and that also got a lot of the media, the government and health agencies to focus on China’s public health problems. But that created a new problem, a kind of over-exposure. No doubt things have improved because of government attention, but though there is still a lot of work to be done [and] media interest in AIDS has been decaying. So one of the main conduits for putting out real information is being lost because people feel AIDS is an old story.... So I hope this award will re-focus attention on the problem and give us a chance to tell the world what’s really going on here.

Q: What exactly went wrong with the blood donation program that the Henan government ran?

A: Well for one, it was not a blood "donation" program, it was a blood sale program. Basically, the local government was getting poor farmers to sell their blood by using a lot of emotional and nationalistic publicity (“selling your blood is like loving your country”) and offering them money – not much, about RMB50 ($6) per bottle, and that was a lot for poor farmers in the mid-1990s.

But the real problem was that when the farmers donated their blood, the government would separate the person’s blood plasma from their red blood cells. The plasma they would keep and sell to pharmaceutical companies, but the red blood cells they would return to the person, mostly because it would help them donate blood more regularly. Unfortunately, the collection centers did not return each person’s blood cells to the same person. What they did is collect red blood cells in pools by blood type and give back people their type of red blood cells from that mixed pool. So even if only one HIV person’s blood cells were in the pool, everyone got the virus.

Q: What are the realities on the ground today?

Well, with media interest down, the main message is from CCTV [China’s national state-owned TV] and state-owned media that are constantly talking of how well the government is handling AIDS in Henan. Even the CEO of Phoenix TV [a Hong Kong-based independent news channel] recently said the world could learn how to tackle AIDS from the Henan government’s response.

In reality ... the true number of AIDS patients is being hidden. The government organized a survey in 2004 that said there are only 25,000 HIV-positive people in Henan. But the method they used was to only look at the 280,000 people who were registered with the (Henan) provincial government as official blood donors.... But it’s well known that since as far back as 1998 we’ve had huge numbers of people who donated blood without being officially registered as donors. I know one doctor working in Henan who estimated there are 300,000 HIV patients there, and later another doctor, Zeng Yi, estimated one million, though later he backtracked, I think under pressure. So I think the number of HIV positive patients can be anywhere between 350,000 and one million people. And in China I think there could be as many as 10 million who are HIV-positive, because the government has admitted similar blood-donation programs were being run in six other provinces.

Q: But that was in the past. Now the government says blood donation programs have been closed or fixed.

A: Yes, that’s what the government says. But when we went to Shandong province, there were six blood collection centers – I call them collection centers, not donation centers – open. When we inspected three of them they seemed very badly managed. Still, they lure farmers into coming there. For example, to make it easy for farmers from far away to come there dormitories have been built around the centers that offer rooms for just RMB 1 (12 cents) a night.

Q: What do think is behind this continuing situation?

A: Money. In China there is a lot of high profits to be made from the blood-selling business. One fact: in 1992 one blood collection operator alone, the Henan Kaifeng Medical Science Institute, said it made a profit of RMB 10 million ($1.2 million) from blood collection. That was a lot of money in 1992.

Another problem is that the low-level officials who ran this scheme in the early and mid-1990s and made money off it are now all senior provincial officers, like mayors. So they are stopping any real inquiries or exposes that could jeopardize their careers.

Q: What first prompted your own interventions?

A: As a college student I’d volunteered to help with AIDS education after I saw a pirated copy of “Philadelphia”. Our plan then was to make a Chinese “Philadelphia” and we began to look for someone who had faced such AIDS-related discrimination. Youths can be so idealistic and simple. At that time the first person in China revealed to have AIDS was Mr. Song Pengfei, and we began to work with him. He had tried to go back to his village in Shanxi but the villagers had stoned him. So he was very depressed. We’d just talk to him, counsel him, and play with him on the field to show people they didn’t need to shun him. At first even my father was worried, but then people began to understand.

In June 2003 I set up my own organization – a school for AIDS orphans in Henan. I worked with a local mosque in Shang Qiu village (and) by October we were up to 23 children and using the media to draw donations. But many provincial officials were upset with that. I think it upset their desire to project a certain image and attract foreign investment. Frankly I think they were also a little disturbed that the school was in a mosque, which somehow added a political dimension to the situation. So just when we began to raise the money to register our school as an official one, they shut us down.

It was very disheartening, I’ll tell you. Opening it had been such a challenge. At first there was debate within the community about whether we should have the school, and than too in a mosque. But eventually they decided the tenets of Islam demanded providing assistance, especially to orphans as the Prophet Mohammad was also an orphan. You see, the orphans had committed no crime. And let me clarify these weren’t children with HIV. They were just children of people whose parents had died of AIDS. And yet they faced so much discrimination. No local school would take them. People were afraid of the children and avoided interaction with them.

Q: Was that because of the lack of awareness?

A: Yes, but more than lack of information these people were victims of misinformation. The concept of AIDS was introduced to China in the 1980s but the government purposely presented it as a terrible disease caused far away from China in corrupt Western societies by drug use and indiscriminate sex. In that way they spread fear instead of information. So it didn’t matter to locals that the people around them with AIDS were just victims of a chaotic blood collection campaign.

Q: But that’s changed now.

A: Yes, but the damage is done. Also the government lied so much even when there was SARS that they now have a credibility problem. So now even when they run good AIDS campaigns – they have these posters of (basketball player) Yao Ming and other heroes telling people they can’t get infected from touching AIDS patients etc. - a lot of people don’t believe it.

Q: When did the trouble with the government start?

A: At first I was praised. I was a member of the Communist Party’s youth league and in 2002 I was titled an excellent member. But then I was becoming restless working with just one person when I knew there were at least 300,000 people who were HIV positive in China at the time. So when the Henan problem was exposed I went there – and was totally shocked. The distress was unbelievable. People were suffering and dying without care, and yet they were afraid to speak up. So we decided to make a list of them – we shot videotapes of them all with the names and details and gave it to the Beijing government and press.

Q: What are you focused on now? How will you use this award in your work?

A: There is so much pain and suffering that my main aim is now to build a community center where HIV-positive people can get support and help as they try to support themselves. While a lot of social work is done at a superficial level, mostly people just need love to help them cope. If there is love there is a desire to help, and then if we provide the support systems we can develop ways to facilitate mutual assistance and help people make a living. A farmer who is bed-ridden cannot work, but his neighbor can help him.

Q: Will you rebuild the school?

A: Yes, but later because right now the government won’t allow it. The award worth $50,000 spread over two years and I will divide it more or less equally between the center and doing an investigation of AIDS in Henan and all of China. This money is a truly unique opportunity for us. It’s hard to get donations from Chinese society because people don’t want to support controversial programs, and money from foreign sources is also like ‘hot money’ because it creates problems for us with authorities. So with this money and the media attention I hope AIDS in China will get with this award we have a new chance – a new chance to reach out to people otherwise being rejected, and give them the medicines, love and aid to live – and yes also die, with dignity.

It seems like a lot of problems that we face in trying to provide services to people affected by HIV/AIDS come back to a basic problem in education and culture. In China, people really don’t have the idea that it is good to help people just for the sake of helping them. In our center, along with working on issues of stigma and discrimination, we also want to help develop this concept of helping others and working to change China into a more just country. Right now the immediate need we see is helping these children who have lost their parents to AIDS. But our ultimate goal is to help transform the Chinese countryside. There are at least 800 million people living in the countryside, and most of these people have no opportunity to realize any potential. They spend all their time and energy just surviving. We want to be part of a transformation of China, where individuals, including those from the countryside, have opportunities....

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