Education key to reducing stigma

Shanghai Qing Ai Health Promotion Center / Ti Gong

Xiaotian (not his real name), a 28-year-old from central China’s Hubei Province, has been Down Under studying and enjoying the laid-back Aussie lifestyle in Sydney — sun, sand and seafood. But it all came crashing down this July when he found out he has HIV.

“I felt sad, desperate, suicidal,” he recalls. “It seemed like the end of the world for me — it felt shameful, like really bad luck.”

Xiaotian hasn’t told any of his friends or family about his situation. “I don’t want them to pity me,” he says.

Although HIV can affect anyone, regardless of gender, sexuality, education level or class, Xiaotian comes from one of the groups most affected by HIV back here in China: men who have sex with men.

According to official statistics, China currently has around 718,000 people carrying the HIV virus. That number looks tiny when you compare it with the country’s huge population of over 1.3 billion, putting the figure at less than 0.1 percent, much lower than many countries, including most in the West.

Like Xiaotian, Dingding — also a pseudonym — found out recently that he has HIV, too. The 27-year-old, who works in Shanghai but is from another province, says he initially felt upset, confused and guilty, but received support and encouragement from a friend — who also has the virus — and was able to quickly access treatment.

“I went to another country to get treatment,” he says. “The medicines there are affordable and effective and they offer a better service than China, but the most important thing is that they care more about privacy and good consulting.”

Both Xiaotian and Dingding believe that one of the biggest problems concerning HIV in China is education.

“Most people here prefer not to talk about it, or to avoid the problem,” Dingding says. “The government hasn’t put enough effort into educating kids and adults. I think most people don’t know how to deal with such diseases or where to go.”

Shao Hui, deputy director-general of Shanghai Qing Ai Health Promotion Center, agrees.

“Our center mainly provides safe-sex and other education for young sexual minorities in Shanghai, including services such as mobile sexually transmited disease (STD) and HIV testing, professional training, academic exchanges and psychological counselling,” he tells Shanghai Daily.

From an educational point of view, Shao believes China’s sex education lags far behind other countries. “Many students do not have systematic access to safe sex knowledge, resulting in students not having the know-how to protect themselves during sexual activity.”

The situation in much of China today is that sex education doesn’t begin until university, but Shao says that needs to change: “We need to give students comprehensive safe-sex education, from primary school right through to university.”

He says that because of the lack of general knowledge about HIV and AIDS in China, many are too scared to tell their families.

Shanghai Qing Ai Health Promotion Center / Ti Gong

Both Xiaotian and Dingding agree, citing that as one reason they have decided they will never tell their families.

“I don’t think they would understand it,” Xiaotian says. “They wouldn’t be able to get the right information or education about (HIV).”

Dingding adds: “(My parents) are not educated enough about this to understand, and I don’t want to burden them or make them feel guilty.”

Shao says that there are many cases where people are shunned by their families after they tell them about their HIV status. “When some parents find out their child has HIV, they may drive them out of the family home … these are the real concerns of HIV carriers and why many don’t tell their families.”

Another big challenge facing those with HIV in China today, Shao adds, is that despite the importance of getting as many HIV-positive people on medication as soon as possible, access to treatment is currently tied to the hukou (household registration) system.

“HIV antiretroviral drugs are provided free of charge by the Chinese government,” he explains, “but in order to get free medication in Shanghai, you need a local hukou.”

As a result, large cities like Shanghai have huge migrant populations who will be unable to access free medication here and may not be able to afford it on their own.

At-risk people refusing to get tested — or who don’t know how or where to get tested — is another obstacle facing China’s HIV situation.

In a recent survey of 1,000 gay males under the age of 25 conducted by Shanghai Daily, it was found that nearly 70 percent were sexually active, but of those, only half have ever been tested for HIV and other STDs.

“Social stigma and discrimination lead to this fear of testing in many cases,” Shao explains. Publicity of HIV and AIDS in the past portrayed it as a terminal illness, which may terrify people, he adds, leading to a fear of even getting tested.

On a more personal level, love is one of the fears facing both Xiaotian and Dingding.

“There are still lots of people who don’t understand the disease, they think it’s too scary,” Xiaotian says. “I think that’s a big problem for me … I think maybe 90 percent of guys couldn’t accept (my status).”

Dingding is a bit more philosophical. “I don’t think it’s necessary to tell your regular friends that you are positive, but it’s important to tell someone you want to have a serious relationship with. It may be a barrier when it comes to having a relationship, but I think it’s still possible to find true love.”

But Dingding says he needs to get used to his new life first, before embarking on a romance. “We should accept ourselves first, then (you can) let others accept you.”

Because of advancements in medication, Xiaotian and Dingding can lead healthy, normal lives, without the risk of infecting their partners with HIV.

“They can live a healthy life completely free of problems,” Shao says.

“There is no problem with my body, because I take my medication every day, and now I care more about my health, eating more healthily and doing more regular exercise,” Xiaotian says. “I still hope they can find a cure soon, though.”

But with all these advancements in medicine, stigma still remains, and that’s the real challenge for people living with HIV today, not just in China but the whole world.

“I think society should offer more care and love to people who are struggling with HIV,” Dingding says. “After all, we don’t have to be afraid of HIV, but we are still scared of prejudice.”