Full of young ethnic
Muslim volunteers, the centre buzzes with chatter, and ideas
echo off concrete floors as the volunteers plan their next
community visits in the heart of Xinjiang province in north-western
Her eyes flooding with tears, Gulnar (not her real name)
remembers discovering four years ago that she and her daughter
had contracted HIV from her husband. Suicide, she explains,
felt like the only escape.
Full of shame and concealing their status from their community
in Yining, a town close to the border with Kazakhstan, the
family was further isolated because Gulnar’s husband
probably contracted the virus from sharing syringes of heroin.
As she nursed her husband through the final stages of HIV-related
hepatitis, Gulnar also cared for her HIV-positive baby and
struggled with her own health. From his deathbed, her husband
implored her to attend a workshop on HIV run by the Red Cross
and, although worn out and depressed, she hauled herself to
the activity centre.
There she found sanctuary. She describes it as finding a
family, many of whom were also from the ethnic Uighur minority
that lives in Xinjiang province.
“My world view got bigger,” she says of volunteering.
“I am respected by others. I am in good emotional health
and it’s been good to meet different people —
HIV-positive people, drug users.”
In 2007 she was employed as a Chinese Red Cross liaison officer,
earning money to help her and her daughter eat well, which
boosts the effectiveness of anti-retroviral treatment.
“People living with HIV come here to get together,
obtain information, share their stories. We don’t have
the chance to do that in our own communities,” says
Over the past four years, more than 30 volunteers have conducted
workshops on prevention and care, raised awareness and reduced
discrimination through community visits and presenting dramas
which can draw big crowds — middle-aged women in colourful
headscarves on little stools, and men and teenagers flanking
the stage. Passers-by are drawn in by onstage shenanigans,
laughter and quiet sobs from people in the crowd who recognize
the stories as their own or those of people around them.
Across China, efforts are under way to reach an estimated
700,000 people living with HIV (out of a global total of 33
million). These statistics and the human toll behind them
have led the Red Cross Society of China, as part of the Red
Cross Red Crescent Global Alliance on HIV, to commit to scaling
up its HIV work by 2010. It aims to reach 27 million people
with messages on prevention and reducing stigma and discrimination,
to target 866,000 people with peer education and to provide
services for 90,000 people living with HIV and their families.
In Xinjiang, more than three-quarters of the 18,206 people
testing positive have injected drugs. Heroin pours into the
Xinjiang Uighur Autonomous Region from nearby Afghanistan
and along truck routes from the ‘golden triangle’
of South-East Asia, passing through Yunnan province, where
the first Chinese case of HIV was diagnosed in 1989. At first,
HIV was more or less contained to injecting drug users, but
now their families are testing positive.
Mostly, the volunteers use the Uighur language, which is
spoken by 8 million people. Around 80 per cent of HIV infections
in Xinjiang occur among Uighurs, and the conservative Muslim
culture means it is important that health messages are culturally
sensitive and, where possible, delivered by fellow Uighurs,
with men educating men and women educating women.
It takes time for perceptions to change. Gulnar is still
discreet about her own status, confiding only in her mother
and choosing carefully who she tells.
Building trust and gaining respect for the programme hasn’t
been easy, says Yasin Abdulla, an HIV programme officer with
the Red Cross.
“In the beginning it was hard to knock on doors, and
talk about HIV and drugs. The volunteers would be thrown out
and rejected, dirty water would be thrown at them, people
would use bad words. Because of discrimination, they would
“Now people are starting to accept our volunteers and
recognize the Red Cross. When the volunteers visit people
in their homes to raise awareness, the community responds
with good suggestions,” he says.
Community trust is needed to build these programmes, and
this requires enormous effort, according to Australian Red
Cross HIV adviser Dymphna Kenny.
“Developing trust relies on being able to feel empathy,
keeping people’s confidentiality, particularly about
their drug use or HIV status, making real attempts to understand
people’s lives, instead of relying on stereotypes or
assumptions and being thoughtful in making genuine, strong
relationships between people,” she says.
Lives are slowly being transformed by these interactions,
“The volunteers have changed. They have a voice in
the community. They think, ‘I’m a volunteer, not
rubbish any more.’ They do something good for their
In the capital, Urumqi, and cities like Kashgar, close to
the Kazakh border, the Red Cross is starting to reach marginalized
“If you can talk to someone on the same level, it’s
easy to communicate,” Abdulla says. “You must
pay attention to every word you say, because if you say something
wrong it really hurts. These people have problems in their
lives — they are jobless, there is poverty, they are
HIV positive. They really need our help. We encourage them
to do the workshops. Then they often become volunteers.
“Acceptance is important. You must join them, and not
only in training but in conversation. Often these vulnerable
people find it hard to express themselves because they lack
confidence and are concerned about confidentiality. When you
can respect them fully, as you would a friend or family member,
then you can work to solve the problems,” says Abdulla.
Will disinfectant spray protect against HIV when someone has
a heroin overdose? Volunteers entertain and inform.
©WANG MIN BING / AUSTRALIAN RED CROSS
This year’s report focuses on HIV and AIDS, arguing
that its effects on specific countries and certain groups
make it a disaster for them. The report examines the
impact of HIV on humanitarian programmes, refugees and
populations affected by war and natural disasters. The
scale of the problem and the challenges ahead make it
vital to have more efficient and cost-effective programming.
The World Disasters report is available by email at:
untouchables: migrants at risk
Living with HIV is one of China’s best-kept secrets.
As an HIV epidemic continues to develop in China, an
epidemic of isolation grows with it, nurtured by stigma
and discrimination. Misunder-standing about the disease
and how it is spread generates such levels of prejudice
that, for untold numbers of people, being HIV-positive
is akin to being an untouchable.
The city of Suzhou counts a staggering 5 million migrants
among its population of 11 million. The authorities
estimate at least 3 million male migrants work on construction
sites alone. They come from all over China, mostly from
poor regions to which they send home money.
Some studies suggest that, away from home for long
periods of time, male migrants visit sex workers and
are irregular users of condoms. The belief that they
are likely to be prominent in China’s epidemic
has led the Red Cross Society of China to target them
within their prevention and care programme. Liu, who
has HIV, says, “They are from places where, when
the authorities know you are positive, so does the whole
community. You should understand, we tell no one about
our status until we absolutely have to. My family didn’t
know until I couldn’t get out of bed in the morning
and they forced me to explain what was wrong. It’s
the hardest time for all of us.”
Several grass-roots groups run by HIV-positive people,
with the support of the Chinese Red Cross, keep in touch
and invite people with HIV to their gatherings. They
also provide peer education, and training on such things
as treatment adherence. A longer-existing support group
even has a much visited internal web site with a chat
room and is working on an e-magazine.