Volunteers spread awareness of HIV prevention to residents in Nanchong, Sichuan Province in December 2011. Photo: IC

"Many Tibetans, especially those who cannot speak Putonghua and live in remote areas, do not know what AIDS is, nor do they realize how dangerous it is," Chupal Sangpo, deputy director of a Sichuan-based NGO that is dedicated to helping Tibetans respond to HIV/AIDS, told the Global Times Thursday.

For the past eight years, Chupal Sangpo, together with some 300 volunteers, has been disseminating knowledge about HIV/AIDS in the country's major Tibetan regions in Gansu, Qinghai, Sichuan and Yunnan provinces and the Tibet Autonomous Region.

During their work, they say they have found that the number of Tibetans who are HIV-positive has increased year by year. Despite the fact that the local governments have spared no effort on HIV/AIDS education, there are still many Tibetans who have no knowledge of HIV/AIDS and rumors and misinformation are rampant.

Volunteers said that this situation has mainly been caused by the language barrier between local officials and Tibetans in rural areas and call for the government to support to their work.

A statement from the Sichuan Provincial Heath and Family Planning Commission said that by the end of 2015, the number of new HIV cases in the region dropped for a fifth consecutive year and 77,000 HIV-positive people received treatment in the previous 12 months.

It also said that the proportion of cases caused by sexual transmission has increased in recent years. About 87 percent of HIV-positive people contracted the virus via sex, among which 12.47 percent were men who have sex with men.

Medical mistrust

According to Chupal Sangpo, previously, in some places, when local disease control and prevention centers diagnosed locals as being HIV-positive they failed to explain what that meant, so some local Tibetans believed that HIV is not serious.

Although local governments in Tibetan areas have tried to spread awareness of HIV/AIDS, they have often been ineffective as their materials have usually been written in Chinese, rather than in the Tibetan language.

Due to the lack of face-to-face communication, misunderstandings between local people and disease control and prevention centers have emerged, along with rumors about HIV/AIDS. Such mistrust escalated when it was revealed that some centers leaked the personal information of some AIDS patients. Therefore, some people believed that if they contracted HIV, they would be taken away by the centers to be locked in iron cage and burned to death, Chupal Sangpo said.

As for people living with HIV, when they saw some side effects of the anti-retroviral drugs that are used to treat the disease, many started to believe that the pills were poisonous. Under such circumstances, many Tibetans are unwilling to take free tests at centers while some are afraid of take medicines provided by the centers

Amid these rumors, some so-called experts or doctors have come to Tibetan regions to defraud locals while some HIV-positive people choose to buy medicines from India or Thailand, but whether those pills are reliably effective or authentic remains a problem.

A report presented by Chupal Sangpo showed that most Tibetans his NGO surveyed found out they were HIV-positive by accident - such as being diagnosed while in the hospital for another reason - and few of them have conducted Voluntary Counseling and Testing. Among the HIV-positive Tibetans surveyed, less than 10 percent have taken medicine for HIV. 

Lhapa, president of a hospital in Rangtang county in Tibet's Aba Tibetan-Qiang Autonomous Prefecture, told the Global Times on Friday that although the local disease control and prevention center has been disseminating knowledge about HIV, local residents failed to understand as all their materials are written in Chinese and his hospital does not have the necessary equipment to test them.

Shy to talk

According to Chupal Sangpo, most HIV-positive Tibetans contract the virus through sex and it has a close relationship with their lifestyle and traditional culture.

"Tibetans, especially those living in pasture areas, are open toward sex. However, they are shy to talk about it, and feel embarrassed to get free condoms from the local disease control and prevention centers," said Chupal Sangpo.

He said that previously local residents misunderstood the country's family planning policy and refused to use condoms. After some cases of people contracting HIV were revealed, they began to realize the importance of condoms. However, it is very hard for them to buy reliable condoms in remote Tibetan areas as some of the condoms sold are fake or out of date.

Moreover, it is also difficult for them to get anti-retroviral drugs in their rural hometowns, even outdated pills which are no longer used in more developed regions.

Some Tibetans living with HIV who tried to get pills in nearby large cities also faced obstacles. According to Chupal Sangpo, for example, if Tibetans who live in the Tibetan areas of Sichuan want to get treatment in Chengdu, the provincial capital, they must first get a temporary residence permit in the city. Renting or buying a house could get them the permit, but it is hard for them to find a house to rent in Chengdu.

"It usually takes them half a year to get the medicine and some of them died during the long wait," he said. 

Wide support

To better spread knowledge about HIV/AIDS, Chupal Sangpo and his volunteers have opened a WeChat account and it has garnered over 140,000 followers so far. 

However, their work ran into objections from the local government. "As we disseminate all the knowledge in Tibetan language, local authorities worried that we may spread illegal information," said Chupal Sangpo.

According to the latest reports, the authorities in Aba organized departments at all levels to conduct education activities in December 2015. For example, Zoige county distributed 180 boxes of condoms, 2,400 pieces of literature to the local residents.

In April 2015, the Aba authorities monitored sex workers in five counties and helped 69 high-risk people. Separately, health officials in Lhasa recently announced that an HIV diagnosis laboratory will begin operating in 2016.

Testing locations will extend coverage to all the city's counties and districts, and a network of HIV testing labs will be strengthened, Phentok, a Lhasa health official, added.
Newspaper headline: Viral fears