Justice Edwin Cameron on the stigmatization of people with AIDS in China

Every once in a while my work puts me in the presence of greatness. It did so yesterday when I had the pleasure and privilege of working with South African Justice Edwin Cameron, the only public official in all of Africa to publicly state that he has AIDS. He is probably also the only openly gay official on the continent. Oxford-educated and a Rhodes Scholar, Justice Cameron’s contributions to human rights and AIDS awareness, and his personal courage, cannot be exaggerated.

Yesterday he spoke with reporters in Beijing about a recent Renmin University-UNAIDS survey [pdf file] on the attitudes of Chinese people in six cities – Kunming, Shenzhen, Shanghai, Wuhan, Zhengzhou and Beijing – toward AIDS and AIDS sufferers. The survey sampled four groups, migrant workers, blue collar workers, white collar workers and youth, and it provides some depressing if not especially surprising findings:

- More than 48% of respondents thought they could contract HIV from a mosquito bite, and over 18% by having an HIV positive person sneeze or cough on them.

- Around 83% of interviewees had never searched for information on HIV/AIDS.

- Nearly 30 % did not know how to use a condom correctly.

- Only 19 % said they would use a condom if they had sex with a new partner.

- Nearly 11% of respondents had had sex with people who were not their spouse, girlfriend or boyfriend during the past 6 months; 42% of those respondents had not used condoms.

- 30% think HIV positive children should not be allowed to study at the same schools as uninfected children.

- Nearly 65% would be unwilling to live in same household with an HIV-infected person and 48% of interviewees would be unwilling to eat with an HIV-infected person.

In other words, we haven’t made much progress since I first started writing about this topic five years ago, at least not in terms of people’s attitudes and awareness. In terms of treatment, there has been huge progress in China, including anti-discrimination laws and free retrovirals for anyone with AIDS. The government needs to do much, more, however. Justice Cameron said, for example, that while the government provides free retrovirals for treatment of AIDS, people must still pay for medications for opportunistic infections from their own pockets, which can easily impoverish them.

I don’t really know what it is about natural leaders, the way they stand out in a crowd even when silent, and the way that they make those they’re talking with feel like they are the only person in the entire world. Edwin Cameron has those qualities, and the reporters he spoke to were visibly moved when he made an urgent appeal to them to encourage HIV sufferers in China to act as activists and to speak out the way he has. That is the only way to overcome stigma, he said., noting that what makes AIDS so insidious is that in many places it remains “a silent disease.” People suffer in silence for fear of ostracism if they tell the truth. This fear discourages Chinese people from getting tested, and those who are tested seek to hide their HIV status at all costs.

“This is a tragedy,” Justice Cameron said. “The Chinese government has a good treatment program. But there is a disturbing pattern here: 35-40,000 people in China are receiving antiviral treatment but more than double that number need treatment.” And they remain silent, and will die unnecessarily, as AIDS today is fully treatable. He pointed to activists in the US in the 1980s who generated a wave of publicity and awareness that put a human face on the disease, lessening the stigmatization in America dramatically. In China and Africa, there are few such activists. That is one of the keys to ending stimatization, he said: Africa needs a Magic Johnson to tell people they do not need to be ashamed of having AIDS.

It isn’t just a matter of fearing ostracism from friends and family, however. He said that AIDS sufferers still get turned away from health clinics in China’s provincial areas. The most poignant moment came when he described to reporters how he needed a special invitation sent from the Chinese government to its consulate in South Africa for him to be permitted entry into China. He added that when he comes to the US he must undergo an even more humiliating ordeal, being tested at the airport to determine whether his AIDS is under control (I am not sure exactly what they test for).

Hu and Wen have visited hospitals and spoken out on AIDS, he said, but efforts to educate the public remain seriously inadequate. “I beg them to do more,” Justice Cameron said.

Perhaps the most controversial topic he discussed was how markedly different the AIDS epidemic is in southern and western Africa, where the level of infection is above 11 percent. This is, he explained, “a mature epidemic, meaning that everone, gay or straight, young or old, knows someone who has died of AIDS.” This is unique; no other geography on earth has seen a massive AIDS epidemic that has spread beyond the main risk groups (injection drug users, plasma donors, “MSM” – men having sex with men – and sex trade workers). It was feared back in the time when I wrote my original post that China would be like Africa, home to a massive epidemic seeping into the mainstream, heterosexual population. It appears that will not happen. Justice Cameron said no one was sure why this phenomenon occurred only in a specific section of Africa, but said the reason could be genetic. In China, the number of people infected by shoddy plasma collection has leveled off, and the levels of infection are beginning to mirror those in other countries, with MSM and injection drug users being the most affected groups.

Working with Edwin Cameron was an inspiration. It was also inspiring to see the level of interest in this topic among the Chinese media. You can se some of the articles here and here. This was the high point of my nearly two years in China, and a day I’ll never forget.

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Richard Burger is the author of Behind the Red Door: Sex in China, an exploration of China's sexual revolution and its clash with traditional Chinese values.

The Discussion: 13 Comments

Funny, I remember hearing that back in the ’80′s when the National Party government started their AIDS awareness program, the acronym was said by ANC comrades to stand for “Afrikaner Invention to Deprive us of Sex”. Dumbasses were practically encouraging the spread AIDS as an act of civil disobedience.

“What? You want us to abstain from sex?”

“Just to spite you, I’ll tell the black masses to have more sex! How do you like that?!”

October 31, 2008 @ 5:39 pm | Comment

You can always stop blogging about politics and keep blogging about this sort of thing. The mainstream media doesn’t report on this sort of story – presumably its neither interesting nor salable enough. I had never heard of Edwin Cameron before at least.

October 31, 2008 @ 6:30 pm | Comment

Thanks, Trevelyan – unfortunately, posts like this (long, serious and about a topic most of us prefer not to deal with) don’t seem to generate a lot of interest. They should. This story is something of a metaphor for China, which is still rife with superstition and lack of education, and where breaking people out of established modes of thinking is painfully difficult.

November 1, 2008 @ 12:49 am | Comment

My math is a little off, but

” Nearly 30 % did not know how to use a condom correctly.

- Only 19 % said they would use a condom if they had sex with a new partner.”

so 70% know how to use a condom, but only 19% would actually use it?

So what about the other 51% who knows how to use a condom but refuse to use it.

November 1, 2008 @ 3:20 am | Comment

Only 11% cheating in the past 6 months is fairly good, I think in Africa it’s closer to 80% and in Europe 40-60%.

Earlier estimates of the rate the disease will spread were overestimated, but still more resources are needed to shield vulnerable subgroups from infection.

November 1, 2008 @ 4:20 am | Comment

Richard, thanks for posting this article. Public health and education issues are everyone’s concern. Everyone can do their part to make a difference. First with educating themselves and modifying their own behavior. Then by reaching out to others to educate, help fund research and by individual support of those afflicted with HIV/AIDS. Remember the Obama’s taking an AIDS test in Africa? That’s the kind of stuff I’m talking about. One doesn’t need to be famous to make a difference. Just having open and honest discussion with friends at a social gathering can do wonders.

November 1, 2008 @ 5:47 am | Comment

Tree sitter, everywhere there are many, many people who know exactly how to use a condom but then don’t use one. Especially now, when people are less terrified because AIDS is no longer a fatal disease.

November 1, 2008 @ 10:59 am | Comment

Joseph’s evil comment is gone.

Richard

November 1, 2008 @ 1:42 pm | Comment

@joseph

That is an insult.

God loves gay people.

November 1, 2008 @ 1:44 pm | Comment

As said before, thank you for this comment. I agree with you that this is the usual subject that people prefer to sweep under the carpet. I really hope one day we’ll deal with HIV the way we deal with Gonorrhea now, but sadly, we are not there. So we have to keep fighting to make the people aware of this silent dark plague.

I’ve just watched an interesting movie about the Seattle riots linked to the 1999 WTO meeting. One of the key characters was a doctor from Médecins Sans Frontières. At one point he made a speech about AIDS and the non availability of treatment in poor countries, because of patent issues, and yes it brought tears to my eyes. It’s unacceptable and it must end now. This stigma is unreasonable and unjustified.

The good news is that, he actually made a statement that was heard. But so far, not much progress.

The world is sick.

November 2, 2008 @ 1:25 am | Comment

Fantastic post, man. I also had never heard of this amazing human being. Thanks for letting me know about him.

I was in the Peace Corps in Kenya in the mid 1980s and then the AIDS rates were already amazing. Stories of whole villages wiped out in the lake region, high schools with infection rates of 16-20%, prostitution wiped out in some areas because the girls all died, etc.

I don’t think Africans are an especially vulnerable population genetically (that doesn’t make sense at all), the way South and Central Americans were to outside diseases in the conquistador era. I think the problem is that when you look at risk factors for aids like the ability of women to control when and with whom they have sex, whether they use condoms, presence of an existing STD, etc, Africans score high on all those. The incidence of AIDS there just reflects the poor health and medical infrastructure, etc, that fill Africa with such suffering.

Michael

November 3, 2008 @ 1:25 pm | Comment

Michael, that is a topic loaded with landmines. There could be other factors in Africa, such as already depressed immune systems due to the environment – no one knows. But there’s never been an outbreak anywhere else in the world among the mainstream heterosexual population. The genetic explanation might simply be the best we have, but the proof isn’t in yet. Some diseases are more fatal and/or frequent among black people. There could be a number of co-factors, from diet to environment to genetics.

I remember the warnings in 2002 that by 2010 there would be 10 million AIDS sufferers in China, based on the presumption it would follow Africa’s model. From the aforementioned survey:

As of the end of 2007, there were approximately 700,000 people living with HIV in China. It is estimated that 85,000 of them have developed AIDS. In 2007, approximately 50,000 new infections occurred and there were an estimated 20,000 AIDS related deaths. Sexual transmission is now the most common way of HIV infections in China.

It hasn’t been as bleak as we expected, but it’s still a serious problem. Let’s hope people like Justice Cameron continue to raise awareness levels.

November 3, 2008 @ 5:53 pm | Comment

Michael is right – it’s a big deal to say you’ve got AIDS and are gay too. The guy is very brave in that respect, though I guess the best thing to do in that situation is be honest rather than try to pretend you don’t have it. Thanks for writing on this, richard.

The condition is still taboo in China, which I think leads to the lack of awareness about how you can develop it. The government needs to grasp the nettle and deal with it, as well as this issue of people being turned away from clinics.

+++

So what about the other 51% who knows how to use a condom but refuse to use it.

treesiter, they prefer to use methods of contraception that don’t reduce their enjoyment of sex – or don’t bother with any. Out of ignorance, a feeling of invulnerability, recklessness, etc. Who knows?

November 3, 2008 @ 10:57 pm | Comment

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