Today on World AIDS Day, China reflects on the rise in HIV-AIDS cases and how to stem them. Cai Wenjun and Zhang Qian talk to doctors, medical students, academics and activists trying to prevent the disease and end discrimination against patients. See page A3 for China’s latest AIDS statistics.

Female professor passes out condoms

Xia Guomei looks like an academic, with her short-cropped hair, metal-rimmed glasses and soft voice, and so she is. But the 58-year-old HIV-AIDS researcher and policy adviser is likely to be found chatting with HIV-AIDS patients, sex workers, drug addicts, gay men and other vulnerable groups.

The sociology professor can even be found passing out condoms to sex workers and working with a range of people that many Chinese consider bad and immoral. Ignorance and discrimination against those with HIV-AIDS is still widespread.

“Many people challenged me, asking why I chose to study and help these people,” Xia told Shanghai Daily in a recent interview. “They said that if I wanted to show concern for disadvantaged people, why not help laid-off workers — not ‘bad’ people.”

She still remembers that her colleague in the social sciences physically recoiled and stepped away from her on learning that she had been talking to an AIDS patient.

Clearly, Xia herself is not intimidated by negative public opinion.

Initially trained to be a doctor and working as a medic for seven years, Shanghai-native Xia changed course and decided she could have more impact through research, writing and education. She later became focused on health policy and HIV-AIDS after attending a forum on venereal disease in 1989.

“Working out reasonable and feasible policies is as important as making medical progress in the fight against AIDS,” Xia said.

For more than 20 years, Xia has been doing outreach, listening to the voices of patients and at-risk groups — giving voice to the voiceless — consulting doctors and experts, developing effective interventions and making suggestions for enlightened public policy.

Through education, she also tries to build public support for HIV-AIDS-affected people and help end discrimination against them and their families.

The privacy of HIV-AIDS patients and their exclusive right to inform others of their conditions is one of her guiding principles — now incorporated into national guidelines on HIV-AIDS prevention and treatment. It’s controversial.

Xia graduated from a city non-college health school and worked as a doctor at a time when there were few university-trained physicians. Her goal was medical school.

Her life and career changed in 1976 when she joined a one-year medical tour of Guizhou Province where the city girl in her 20s was shaken by the poverty and widespread health problems she witnessed.

To rescue a sick child in the mountains, Xia climbed a steep and rugged incline after a landslide, but when she arrived, she found that the child had died. According to local custom, the body was left in the forest, since children under the age of seven are not buried. “I felt terrible, but I could do nothing about it,” Xia said. “It was the first time for me, an urban girl, to witness such miserable living conditions of people in my own country. I just didn’t know how I could help.”

She continued touring mountain villages to provide medical assistance but a new idea was taking shape.

“Certainly being a doctor can help people and save lives by curing disease and giving treatment, but the influence is so limited, compared with what can be done in policymaking,” Xia observed.

She decided to attend university, majoring in sociology. When she graduated in 1985, she was assigned to the Shanghai Academy of Social Sciences, where she still works today.

In 1989, she attended the First Venereal Disease Prevention and Treatment Academic Symposium in Shanghai. That inspired her 20 years of research into venereal diseases and HIV-AIDS, areas where she believes she can make a difference and improve lives. She also emphasizes medically accurate sex education for children and young people.

She set up the AIDS Social Policy Research Center under Shanghai Academy of Social Sciences, where she and other volunteers work, reaching out to affected groups. Not all officials in the academy were enthusiastic about her condom distribution and efforts to help sex workers and drug addicts.

Xia said the tendency to link HIV-AIDS with morality and danger makes it more difficult to change public attitudes and also “imposes cruel living conditions on AIDS patients.”

Her first encounter with a married AIDS couple came in 1993 at the Shanghai Center for Disease Control and Prevention. The man had been diagnosed with HIV contracted through a medical procedure; the wife was waiting for a diagnosis — she was HIV-free.

At the time they met Xia, the couple was distraught. They had cut themselves off from most social contact to avoid discrimination and hatred. Their son had to leave school when classmates learned his father was infected. Many doctors turned the couple away when they learned the man was HIV-positive.

Though knowing that AIDS does not spread at the dinner table, the couple nonetheless refrained from eating directly from the table at a cousin’s wedding banquet, fearing that he would be frightened and angry if he came to know later of the man’s condition.

The woman burst into tears as she poured out her sufferings to Xia. It was the first time she had ever expressed those pent-up feelings and she was grateful to have a patient and compassionate listener.

“Many people accuse AIDS patients who spread the virus intentionally or unintentionally of being bad, but they don’t realize the cruelty of their attitude toward a group of people already at the edge of desperation,” said Xia. “A little more care and understanding would give them much comfort, but instead many of us choose to give them the cold shoulder and turn a blind eye to their pain.”

To explain the importance of education, Xia also cited the case of a young woman in a rural area whose husband was HIV-positive because he sold his blood to help the family. For five years she was tested and was always negative, but no one told her that a condom could protect her and she never used one. She contracted HIV. Her husband said that wasn’t a terrible thing since he contracted it to support the family and said she should accept it.

Prevention and treatment of HIV-AIDS is not simply a medical problem. Help from society is essential, Xia says.

Health policy researchers and workers can help reduce discrimination, carry out effective behavior interventions, and work out possible channels for medical support, she said.

In 2004, Xia and other experts launched a program called “Listening to Voices from Different People” to encourage and accelerate work on regulations about the prevention and treatment of HIV-AIDS.

The group interviewed sex workers, drug addicts, HIV carriers, AIDS patients, their families, children and ordinary people, so their input would be part of the policymaking process. In 2006, the experts’ group developed a proposed draft of guidelines and regulations for Shanghai on the prevention and treatment of HIV/AIDS.

Though Shanghai guidelines have not been issued, the National Regulations on Prevention and Treatment of HIV/AIDS released in the same year embraced some of their suggestions. That includes HIV-AIDS patients’ right to privacy and their exclusive right to know and tell others about their conditions. That approach is controversial and not always implemented.

Xia has also focused on sex workers in Shanghai and around the country, noting that women are especially vulnerable and need to be educated, encouraged and empowered to use condoms. Progress has been slow.

“Though most sex workers now know condoms will protect them from infection, some still relent when customers refuse to use them,” says Xia.

The situation may be better among the sex workers doing good business or working in high-end venues, but other women may agree not to use condoms for fear of losing customers.

Despite limited progress, Xia still insists on further intervention trials involving sex workers and urges more support from nonthreatening nongovernmental organizations and volunteers.

 Xia’s husband is a researcher in philosophy and her daughter is a university student majoring in psychology related to HIV-AIDS issues.