"In 1996, a female patient was admitted to a hospital in Zhengzhou city. No confirmed diagnosis was made for 16 days. An HIV test finally confirmed she was HIV-positive. She died a few days later, at the age of 42. She had probably been infected through a blood transfusion during an operation some time before. Her husband and two children were not infected with HIV. This was the first time I had seen an AIDS patient and it convinced me of my personal duty to sensitise people on HIV/AIDS, and to try and minimise its disastrous effect on society.

In 1996, I began to publish a first series of HIV education materials at my own expense. Despite serious financial constraints, we managed to disseminate 12,000 materials. A year later, having learned that HIV/AIDS was also seriously affecting rural areas, I expanded my HIV prevention activities to those areas.

Each year, I tried to employ new strategies to disseminate HIV information, such as through grassroots health workers, family planning clinics, families of AIDS patients, at bus stations or on trains, as well as through newspapers and magazines. I asked friends to help me distribute education materials in rural areas. HIV/AIDS also became a standard topic in my lectures for students and the general public. People started saying I had a "peculiar fascination for spreading the word on HIV/AIDS". More and more people started asking for information: I received more than 3000 letters in one year alone!

Fighting misunderstanding, fear and stigma

Yet, misunderstanding about AIDS remains widespread. Most people still believe they can only contract HIV from sex workers and do not consider themselves to be at risk. Many regard AIDS as an ‘immoral' disease, damaging one's reputation. Some are even ashamed to read HIV education materials. Therefore, my HIV education efforts were often met with scorn. However, people living with HIV/AIDS (PLWHAs) have had much worse experiences: when walking on the street, others ran away from them in panic; neighbours were afraid to visit or even talk to them. Some families even moved to other places. No one dared to carry the coffin of people who had died of AIDS.

The social stigma attached to AIDS only convinced me to further intensify my HIV education activities and with time the mass media started paying more attention to the topic as well. Since 1999, the media have aggressively covered AIDS, bringing about a lot of letters and phone calls.

HIV infection through blood transfusion

A study by one of my colleagues in November 1999 revealed that unsafe blood transfusions were a major source of HIV infection. I had established personal contacts with twelve PLWHAs in November 1999: nine of them had been infected through selling blood, while three others had been infected receiving blood. Although I tried to help them with free drugs for opportunistic infections, many died within a short period. Over several years, I found out that blood transfusions were indeed a major source of HIV infection. However, multiple HIV tests with partners of PLWHAs over a period of 2-3 years also showed that many of them remained uninfected and in good health. This finding encouraged me to step up my HIV education activities.

Research: countering denial with facts

Yet, my efforts were sometimes misinterpreted by some people who said that I was "fooling around for nothing." On 1 December 1999, the Zhengzhou television station invited me for a live programme on HIV/AIDS. Later that afternoon, a local political leader told me: "We did this for your sake; AIDS is no good. Up to now, not a single AIDS patient has been found in Henan province."
In August 2000, the China News Weekly published a detailed report of mine on AIDS in Henan province, which was reprinted by many other newspapers and magazines. Some political leaders criticised me for providing unauthorised information about the AIDS epidemic to reporters: they said it had tarnished the image of Henan province and they ordered me not to accept any future media interviews.
However, I continued with my HIV research. A survey in 2000 on AIDS awareness among 10,000 people revealed that less than 15% had correct knowledge about HIV infection routes and HIV prevention. People knew very little about blood transfusions as a mechanism for HIV infection. Therefore, I recently finished a publication specifically addressing this issue which will be available free of charge for grassroots health workers in rural areas, PLWHAs and their families.
However, prevention is not the only issue: we also need to address care and support for people living with, or otherwise affected by HIV/AIDS. A recent letter from a child whose mother was HIV-positive made me take up the case of children whose parents have died of AIDS and particularly orphans who are themselves HIV-infected. In March 2001, I started a study on HIV-positive orphans, but local officials tried to cover things up: we had an experience of being ‘escorted' out of the county border and driven out by local health workers! Nevertheless, we managed to visit seven villages and saw many AIDS patients.

Despite the many hurdles, I will continue my HIV/AIDS work in prevention and care, research and education. I know my efforts are just a drop in the ocean, but I am convinced I can inspire others to get actively involved in the fight against HIV/AIDS."