At age 20, a drunken night completely changed Eric Tan’s life. He was then a sophomore at Yunnan Normal University in Kunming, the capital of southwest China’s Yunnan province. Tan woke up after a party next to a boy he didn’t know, with no memories of what had happened, but his body told him that they had had unprotected sex.
Tan didn’t realize that something was seriously wrong, however, until his face began to vigorously break out, and his body became weaker over the next two years. He was excited to get a job after graduation at an educational institution for the hearing impaired — but was disqualified after testing positive for HIV during the pre-employment physical examination.
According to Chinese policy, HIV carriers can’t be legally employed in civil service positions. Though the principal was kind enough to offer him an exception, Tan didn’t want to get in trouble. He quit.
A survey from the Chinese Journal of Clinical Psychology found that 89.47% of respondents have lost their jobs at least once as a result of their HIV/AIDS status. Though China’s infection rate is relatively low compared to other countries — around 5 out of 100,000 people as of last year — the number of new HIV infections has increased annually since 2012 (the earliest year that data is available). According to the National Health Commission of the People’s Republic of China, the number of new cases increased from 41,929 in 2012 to 71,204 in 2019, and the number of HIV-related deaths almost doubled in that same period.
In particular, the infection rate among young people for HIV/AIDS has risen significantly. Official data shows that young people ages 15 to 24 reported about 3,000 new HIV/AIDS cases yearly since 2012.
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Though awareness of safe sex and HIV prevention is steadily increasing, advocates say that especially for sexually active youth, many still don’t put this newfound knowledge into practice. Meanwhile, the testing rate in China has also climbed from 21% in 2005 to 69% in 2018, which has resulted in more cases being reported.
In honor of World AIDS Day this year, we spoke to individuals that are striving to make HIV-positive individuals around China feel loved, supported, and heard — and ensure that the disease becomes a thing of the past.
“The Family They Choose”
Two months after receiving his diagnosis, Tan got a job offer from AIDS Care China, a Kunming-based NGO providing care and support to people living with HIV/AIDS across the country.
AIDS Care China CEO Luo Tingyan tells RADII of the organization’s mission:
“HIV is just a disease. [People living with it] are not vulnerable people who need special care. They just need the rights and dignity they’re supposed to enjoy like normal people.”
AIDS Care China began in 2001 as a bulletin board system on which patients could share information and support. Over time it developed into a project-based organization that now provides consulting, treatment, and even a children’s home.
Tan himself is now in charge of a project in cooperation with the International Treatment Preparedness Coalition (ITPC), investigating how the Covid-19 pandemic has affected antiretroviral treatments.
Eric Tan interviews a patient (image: courtesy Eric Tan)
In conversations with patients, Tan says he realizes “how lucky he is” to have a family that is understanding and caring. Discrimination against people living with HIV/AIDS is still prevalent in China — not only from workplace colleagues and acquaintances, but also from family members.
Tan recalls a 65-year-old HIV-positive woman that died earlier this year. She had just been discharged from the hospital and was in good condition, but her family was unwilling to retrieve her medicine due to “fear of Covid-19.”
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Tan thinks that was an excuse, saying that “she [would have] been all right if she had taken the medicine on time.” He has also heard of a common stereotype about elderly people living with HIV/AIDS — that they’re “old yet still so dissolute.”
“Discrimination from family is the worst [kind],” Tan says, adding that he has considered building a community for people like her.
“These people have been abandoned by society. For them, finding a new community can be the family they choose.”
“Happy” Treatment
Todd Sui joined Qingai Clinic (青艾诊所) as its general director last year. Qingai, which translates to “HIV prevention for young people” in English, was founded in Shanghai to provide health education, psychological consultation, diagnosis, and treatment for sexually transmitted diseases such as HIV/AIDS.
Though China began offering free, immediate HIV treatments as early as 2003, people living with HIV/AIDS are often denied medical care in public hospitals due to fear and ignorance about the disease, according to Reuters.
That’s where Qingai comes in as a supplement, says Sui, in hopes of providing “happy,” nonjudgmental care as well as faster and easier medical treatment for HIV carriers.
Two staff members at Qingai Clinic (image: courtesy Todd Sui)
“Treatment is the best prevention,” Sui says, referring to the reduced risk that carriers undergoing treatment have of transmitting the disease to others.
Sui first participated in HIV/AIDS prevention activities around 2008, when some of his HIV-positive friends were suffering from mental health issues and job search difficulties. He wanted to help them “step out of the shadows” and actively seek treatment.
Though Sui is glad to see that Qingai is tackling some of these problems, he hopes to develop the clinic into a general hospital, so that it has the capability to perform major surgeries and hospitalization in the future.
Uprooting Stigma
Chang Kun, a community activist and social worker for 17 years, believes that HIV/AIDS is as much “a social, cultural, and legal problem” in China as it is a medical one.
He first studied law in Urumqi, Xinjiang, and now runs an information hotline based in eastern China’s Anhui province, offering legal advice around HIV/AIDS related issues over the phone or on social messaging platform WeChat. The service is free, though tips are encouraged.
Through the hotline, he says, they provide legal solutions for clients “on the basis of law, sociology, social relationships, psychology, and more.”
Chang Kun making a speech during a community meeting in 2012 (image: courtesy Chang Kun)
Yet Chang says he is not always able to provide a solution that works. He still remembers a woman in Henan province that he feels he failed to help, who was accidentally infected during blood donation and then became an HIV activist. Her middle school-aged daughter still refused to accept her.
“[She told me,] ‘You’re so disgusting and make me miserable,’” Chang recalls his client saying before she died.
Chang and his team visited her once every two weeks for more than a year, trying to talk her out of her prejudice and make peace between mother and daughter. Yet until the day her mother died in 2015, she still did not understand.
“Unless she left her social environment,” says Chang, “there was nothing else we could do.”
Though rising cases have arguably made these services more necessary, times are tough for such enterprises. Chang says that he has started a side business to support his wife and two little sons, as he is running out of funds. “If possible, I’d love to fully concentrate on this work,” he says with a sigh.
Even calls to the hotline have gone down, with barely a hundred per year compared to the thousands he would get in years past. Chang suspects that this is partly because as more legal cases related to HIV/AIDS have made national headlines, public awareness has also increased. (Chang also published a book entitled 100 Questions on AIDS-Related Rights Protection in 2015, which he says may also account for a drop in calls.) Yet he hopes that he can make more use of his specialty in the near future.
Paralleling the higher testing rates and more open dialogue around HIV/AIDS in China, the efforts of people like Chang, Sui, and Tan are fighting to ensure sexual and legal protection is transmitted onto the next generation — and that in the not-so-distant future, the HIV/AIDS curve may be flattened for good.
Header image: Sabina Islas
