Time to recognize that AIDS is a disease, not a shame

By Chinese media Writer Bai Xu

BEIJING, Dec. 1 (Chinese media) -- Reported to be China's longest-surviving AIDS patient, 40-year-old Meng Lin -- who uses apseudonym -- can be seen as an expert on changing public attitude toward the deadly disease.

"The general situation is improving, encouraging more HIV carriers to step out of the shadows and join the national campaignto curb the spread of AIDS," said Meng.

He sounded hoarse and tired, a situation that the founder of the "Ark of Love," an organization for HIV carriers, explained wasdue to a busy schedule ahead of the annual World AIDS Day.

Meng's tone turned bitter when asked about the stigma of the disease.

One story he told was about a woman who goes by the pseudonym of Xiao Hong, who went to a renowned hospital in Beijing earlier this year for a kidney disorder.

The unidentified hospital suggested surgery, but when it learned that Xiao was an HIV carrier, it turned her down. She tried two other hospitals, both of which also rejected her.

Her husband, who was also HIV-infected, became so angry that heeven considered committing suicide in public as a protest. Xiao said bitterly that she wished the doctors themselves would be infected.

PERSISTING STIGMA

In China, the first group of AIDS patients were mostly poor farmers, who got infected with the HIV virus when they sold blood to unlicensed operators, dubbed "blood heads," in the early 1990s.

The "blood heads" had a deadly practice: they pooled all the donated blood, spun it through a centrifuge to separate the plasma,then pumped the residue back into the donors' bodies in the beliefthat the practice was safe -- and cheap.

Since it can take a decade for an HIV infection to cause symptoms, it was years before most of the infected learned of their fate. They spread the infection to their families, either through sexual contact or by mother-to-child transmission to unborn children.

People in China didn't and often still don't know what type of contact does or doesn't spread HIV and so prejudice persists, eventhough overt discrimination against HIV carriers was outlawed in China 10 years ago.

A report in September by UNAIDS, which polled some 6,000 students, white- and blue-collar workers and migrant workers, found that more than two-thirds wouldn't live in the same household with an HIV carrier and nearly half were reluctant to eat with such people.

The study found that 48 percent of the interviewees still believe that a mosquito bite can transmit HIV, while 18 percent thought they could contract HIV by having an infected person sneeze or cough on them.

The other cause of stigma is bias. People, and on many occasions the media, associate HIV primarily with frowned-upon activities such as intravenous drug use, prostitution or homosexuality.

The UNAIDS report shows that more than 30 percent of the interviewees from six cities in China thought people with HIV/AIDSdeserved the disease because of their sexual or drug-related conduct.

THEY NEVER EXPECTED IT

When I visited the HIV-infected in Shanxi and Jilin provinces, the words I frequently heard were "I didn't expect that I could beinfected ... I thought the virus something just for those 'bad people'."

Xia Shuqing, an HIV carrier in Soudengzhan Township, Jilin, recalled her despair facing isolation. "I am not afraid of death -- after all, sooner or later I am going to die. Better to die early, less humiliation," she said.

Facing prejudice, just 10 percent of those who suspected they were infected were willing to be tested, while the majority deliberately kept themselves in the dark, said Zhang Lei, a program officer with the UN Children's Fund who has worked in the field of HIV-AIDS for years.

Zhang vividly remembered a phone call she received from a womanon the verge of hysteria.

"She said she had betrayed her husband once and had sex with anAmerican-Chinese, and she claimed that she had developed symptoms of AIDS, and sores also appeared on her sons' bodies," Zhang recalled.

The caller, whom Zhang considered well-educated, wept, yelled and screamed.

"I don't know whether she got a test after all and if she was really infected, but the case is by no means exceptional," she said.

HOPING FOR TOLERANCE

To check the spread of the deadly virus, we have to check our attitude. Just as Meng Lin said, "it is merely a disease. Why couldn't we call a disease a disease?" There are ways everyone canhelp.

Government officials need to acknowledge that the existence of HIV/AIDS might be a tragedy, but it is not a shame.

Indeed, the Chinese government has made great progress over theyears, as can be seen from President Hu Jintao shaking hands with the infected to the tour of Wu Yi, then health minister, to an AIDS village.

It can also be seen in the "four exempt and one care" policy drawn up in 2003 to ensure the HIV-infected in rural areas get free medicine and regular check-ups, and in the annual census by the Ministry of Health of the HIV-infected, which stood at 700,000last year.

But in some intermediate-level governments, officials still consider the disease an obstacle to development, or perhaps their own careers.

As Meng Lin said: "I am afraid of AIDS day." In November, journalists vied to interview him and his friends; the rest of theyear, HIV carriers are largely forgotten by the media.

And it's one thing for media reports to warn people about drug abuse and unprotected sex. But it would be better for reporters tofocus on the real physical and mental problems of the infected, and to urge society to treat them and their families better.

The public has a role, too: it can treat the infected as friends. This doesn't mean sympathy or mercy, which they don't need. They are just like you and me.

There are many ways to become infected. Many people may sell blood to send their children to school, have blood transfusions during operations, or have sex with those they love before urging their partners to take an HIV test. The infected people are just less fortunate.

In Chinese there is an aphorism: "Treat others the way that youwould like to be treated." Why hurt those who are already less fortunate?

I have many hopes, and I believe that there might be many people who share those hopes.

I hope that in the future, the uninfected won't be afraid to mix with the infected; that job-seekers will be judged by their ability and not their HIV status.

I hope that patients don't have to fear seeking treatment at hospitals.

I hope that vegetable suppliers can tell customers, without shame, that the mushrooms they are selling were grown in the "AIDSvillage" of Shangcai by a group of unlucky yet unyielding farmers,without having to worry if the customers would reject their goods.

I hope that HIV-infected children can play with their classmates as friends, can study together and help each other.

It may seem like a dream now, but I hope it is not far away.