HIV/AIDS: Has anything really changed in China?

On the 16th May, millions of candles will be lit around the world to commemorate those who have died as a result of the AIDS virus. The International AIDS Candlelight Memorial, started in 1983, is one of the largest grass-roots movements, in the world today. It’s organizers, the Global Health Council describe that the Candlelight Memorial as “more than just a memorial”;

It provides opportunities for leadership development, policy advocacy, partnerships, and improvement of community mobilization skills. With 33 million people living with HIV today, the Candlelight continues to serve as an important intervention for global solidarity, breaking down barriers, and giving hope to new generations.

The Chinese Ministry of Health and UNAIDS estimate that China had 560,000 to 920,000 living HIV carriers, and 97,000 to 112,000 AIDS patients by the end of 2009 (Xinhua, 2009). These are large numbers yet the spread of HIV/AIDS is a commonly underestimated and misunderstood problem, in the Middle Kingdom.

The notion that the Candlelight movement helps “solidarity”, “breaks down barriers” and “gives hope to new generations” is almost a sacrosanct notion, in China. When one looks at the literature surrounding HIV/AIDS in China, it’s rather surprising to learn that Shanghai is running a Candlelight Memorial for the 5th consecutive year. It’s surprising because China has a horrendous record of stigma and discrimination against people living with HIV/AIDS. Despite the official lifting of the ban on foreigners with HIV/AIDS, enforcement of the law appears to remain unchanged, and one has to wonder was lies behind the glitz and glamour of Shanghai’s 5th memorial. UNAIDS, the United Nations Programme on HIV/AIDS, recently released a ‘Stigma Report’ on China. If you want to see the full report, check it out . I’ve compiled a few choice cuts that exemplify the upsetting state of discrimination against people living with HIV/AIDS (PLHIV)

How PLHIV sufferers feel in China

• More than half of respondents were worried about being insulted or threatened, and almost one quarter worried about being physically attacked.
• 50.5% feel like they have/will lose friends because of their illness
• 53.7% feel like they have/will experience people distancing themselves from them
• 58.1% isolate themselves from society due to self-stigma
• Over half of women and 40% of men have considered committing suicide since being infected.

The right of confidentiality of PLHIV in China

• Almost half of respondents (49.8%), whose friends or neighbours were aware of their status, said that these people have been told about their HIV status without their consent.
• Even worse, 15.3% of respondents said that a healthcare professional had told other people without their consent!

Discrimination against PLHIV in China

• 41.7 percent of respondents report having faced some type of HIV-related discrimination.
• 12.1 percent of respondents had been refused medical care at least once since they were tested positive.
• Of female respondents who were married or who had had sexual partners since being infected, 11.9 percent had been pressurised into terminating a pregnancy by medical staff/family planning department staff.
• Of those respondents with children, 9.1 percent said that their children, who were not necessarily HIV positive themselves, had been forced to leave school because of the HIV status of their parents.

These are just a few of the shocking statistics found by the survey. I’ve never been disgusted by reading official papers (they’re rather sterile), but I have to admit this is the first. Especially the portions of the paper dealing with instances of confidentiality breaches by certain medical staff. The poor moral decisions of some Chinese doctors are reasonably well-known in the healthcare world, but this level of ignorance and disrespect completely trumps accepting ‘hong bao‘ and typical ‘antibiotics-with-everything’ practices.

Outside of the UNAIDS Stigma Report, the picture is pretty much the same, albeit with a human face.

Yanqiu Rachel Zhou’s 2007 article for Social Science & Medicine entitled; ‘‘If you get AIDS, You have to endure it alone: Understanding the social constructions of HIV/AIDS in China”, was a qualitative study of 21 PLHIV in Beijing (Zhou, 2007). While it’s always advisable to look at cold hard facts, healthcare is about people and it’s refreshing to see an anecdotal side to compliment the UNAIDS’s much more representative, but sterile, sample.

All respondents in Zhou’s study experienced feeling “awkward”, “faceless”, “ashamed”, and/or “inferior”. ‘Guo‘, one of the subjects, claimed that his wife divorced him because of the stigma of his condition:

“[My wife] didn’t accept these three words [i.e. ai zi bing, HIV/AIDS]. These words sound awful. I never thought I would get this disease, either. … When [one] hears these words, the first thing that comes to one’s mind is that you must have some immoral relationships outside [your marriage]. You get this disease only because you have promiscuous behaviours. …Not only she thinks this way, most people think this way. According to the old Beijing saying, this is a dirty disease. One’s reputation is not good if one gets it.”

Other quotes from the study include:

While people with other incurable or infectious diseases are visited by their families when they are hospitalized, it is not always the case for [the respondents]. ‘‘I think only people living with HIV/AIDS can understand such pain.’’ Guo commented: ‘‘If I had cancer, I could tell people about that. But if you get AIDS, you cannot tell anyone about it. You have to endure it alone.’’
…
Jing became extremely cautious after hearing of his friend’s experience of being mistreated by a dentist: when the man disclosed his HIV serostatus when he went to have teeth removed, the dentist promptly put down all his instruments and left. Han’s story of being rejected for surgery by a hospital was also well known among [PLHIV] and increased their nervousness about disclosure.
…
Despite his knowledge about HIV transmission, for instance, Yu had not dared to kiss or hug his daughter since his diagnosis 7 years before, and he washed his hands so much they looked blanched.
…

At least publicly, Chinese authorities do recognize these problems. Deputy Health Minister; Dr. Huang Jiefu said that the government will work harder to remove the stigma and discrimination against PLHIV, but admitted that it would be “difficult”. As mentioned in Zhou’s (2007) report, there are many misconceptions about the virus. Huang stated that:

The biggest obstacle is that there is not enough education or publicity about AIDS. Society does not know enough about the disease, and people think you can get it just from touch, talking, shaking hands or eating together. That is a huge problem.

Huang (Reuters, 2009)

Huang is correct. The widespread ignorance regarding HIV/AIDS will be extremely difficult to overcome. Being misinformed is an excuse for the masses, but there’s much more to the China’s problems with HIV/AIDS awareness. For one thing, high levels of discrimination are reported amongst medical staff (26%), government officials (35.3%) and teachers (36.2%) (from the UNAIDS Stigma Index report). These people set the example for the rest of society.

As Kathleens5 (an upscale restaurant in the centre of Shanghai) holds the 5th Candlelight Memorial, complete with a cocktail party, charity auction and gala dinner one starts to think that it will take more than a grass-roots movement/corporate event at a fancy restaurant to bring about an environment in which Chinese HIV/AIDS sufferers feel safe to call their home.

UNAIDS, in cooperation with Chinese NBA star Yao Ming and the Ministry of Health, have launched an anti-stigma video campaign (UNAIDS, 2009b) to educate the masses. In order to really change things, however, much more is needed in the field of sex education. It’s unpleasant to suggest such a laissez-faire approach, but I think that time is the best cure for China, in this case . HIV/AIDS is still a relatively new disease (especially in China) and China’s sex education programs were late in addressing basic fundamentals about sexually transmitted diseases, contraception and non-traditional lifestyles. Entire generations have grown up knowing little about the most basic facts about safe sex. I believe that the only way Chinese society will come to accept HIV/AIDS is when the younger, more modern generations grow up and have children of their own.

So for now, AIDS awareness is likely to help somewhat. In the cities, where Candlelight Memorials and video campaigns take place, there is definitely an attempt to remove the stigma of HIV/AIDS and improve the well-being of those who suffer from the illness. These methods will likely resonate with China’s youth, who partake in more contemporary sex education and help reinforce the message. On the other hand, discrimination is so deeply ingrained in China’s society that I think time will have to take its course and the older generations, without comprehensive sex education and ‘less traditional’ values, will be much more slow to adapt to the changing opinions of HIV/AIDS in the country.

References

Global Health Council (2010) http://www.globalhealth.org/

Huang, J. (2009) China AIDS sufferers face widespread discrimination: UN. Reuters. http://www.reuters.com/article/idUSTRE5AQ0GR20091127

International AIDS Candlelight Memorial (2010) http://www.candlelightmemorial.org/

Kathleens5 (2010) Candlelight Memorial Remembrance Day. http://charity.kathleens5.com/

UNAIDS (2009) The China Sigma Index Report http://www.unaids.org/en/KnowledgeCentre/Resources/FeatureStories/archive/2009/20091127_stigma.asp

UNAIDS (2009b) UNAIDS Executive Director, Yao Ming and Government launch campaign against discrimination in China http://www.unaids.org/en/KnowledgeCentre/Resources/FeatureStories/archive/2009/20091127_stigma.asp

Xinhua News (2009) Wen encourages HIV/AIDS sufferers. http://www.china.org.cn/china/2009-12/02/content_18990412.htm

Zhou, Y.R. (2007) ‘‘If you get AIDS, You have to endure it alone’’: Understanding the social constructions of HIV/AIDS in China . Social Science & Medicine, 65, pp. 284-295.