International Federation of Red Cross and Red Crescent Societies - May 5, 2005
John Sparrow in the Ili Valley

Yining is located in the Ili Valley, 60 kilometres from the Kazakh border in Xinjiang, the Uyghur Autonomous Region of northwest China. The valley is spectacular: grasslands, forest and farms lie below the snow-capped peaks of the Tian Shan mountains.

But not everything here is so salubrious. Poverty, unemployment and a branch of the heroin highway that runs from Afghanistan to Russia, cast long shadows over the valley.

Less well-known than narcotics centres across China's western borders, Yining is nonetheless a transhipment place. More heroin comes up from Southeast Asia's Golden Triangle, and the trade has developed into a thriving local business.

Heroin is cheap, costing around a dollar and a half a shot. But the cost in human terms is enormous, and wherever drugs are injected, HIV is close behind.

Official statistics reveal Xinjiang to have the nation's fourth highest incidence of the virus, and drug users sharing needles are the major cause of its spread.

Evidence of drug use is everywhere and Red Cross volunteers patrol public places to collect used needles and remove the risk to health and safety. It is far from all they do. They are the product of a positive peer education programme, known as PE +, that trains former drug users and people infected, or affected, by HIV as community educators.

Much of their time is spent visiting homes, going house to house, sitting down with anyone who will listen to how you do, and do not, acquire the virus, and the dangers of injecting drugs. The knowledge they pass on can slow the spread of HIV and reduce the stigma and discrimination that surrounds it, the product of fear and ignorance.

The volunteers are reaching out to their peers, drug users and their families.

"It deliberately isn't obvious," says Hai Li Man, director of the Xinjiang Red Cross HIV/AIDS programme. "If it was we might create problems. People would say: there's the Red Cross. That house must have a user or a positive person. You would only feed the discrimination."

"We take whole streets, whole neighbourhoods, and those who need us most and need advice - perhaps about care for HIV-positive people, on protecting partners, or the risk of transmission at home - remain anonymous. For people living with HIV/AIDS, the volunteers can offer psychological support and basic peer-to-peer counselling," she adds.

"Every part of town has its drug users," one volunteer asserted. "I've been to every house in my neighbourhood, visiting 20 families a month. Of those 20, maybe a quarter have had someone with a drugs problem, or someone already infected."

Since June last year, HIV-positive people and their families have also had access to self-care workshops that some volunteers are running.

Anyone can attend and some are coy about why they come. They may say it is to help the neighbourhood should anyone there become infected. More can be said when volunteers follow up with home visits.

Peer volunteers recruited from within Ili's own drug-user community can reach further than any professional, Hai Li Man argues. "They have empathy," she says, "respect for those they are dealing with. People feel that. They see the conviction, the commitment, the understanding."

It is often more than empathy. Many share the suffering and the heartbreak. How many volunteers are HIV-positive is not known. The Red Cross never asks. But of the 30 volunteers in the programme - which is supported by the Australian Red Cross - more than ten are ill at the moment, and illness is increasing as more enter the disease's end stage.

Gulnar (not her real name) is 23, a peer volunteer and a workshop facilitator. The mother of an 18-month-old daughter, she recently tested positive having got the virus from her husband, a former drug user who died at 29 of hepatitis. She knows the fear and isolation positive people live with.

"When I see what they are going through I become so sad," she says. "But I know what to do to help them, things I did not know when I lost my husband. I never speak about me but I treat them as I would my own family."

A pretty, bright medical student, her world fell apart the day her husband came home and revealed he was HIV-positive. He no longer used drugs but had shared needles and syringes in the past.

"I knew a little about HIV and that your partner could pass it to you. I thought, maybe our child will have problems. I went berserk. I screamed at him. It scared him, I guess, because it wasn't the way we were. In an instant the whole world changed," she remembers.

Now Gulnar labours to prevent that happening to others and to reduce stigma and discrimination. She does so with passion because she cannot forget how she felt that day.

"I thought: we have to keep it a secret.

Perhaps if we do we can go on being happy, even if our lives won't be long. What if people knew? His father came to eat breakfast with us each morning. We couldn't tell him. He might reject us. He might never come again."

Gulnar wanted to run. "We had to go out, see normal people, pretend we were normal as well. We'd leave this thing in the room, we said, leave the bad news at home. We did and on the streets we felt better, but when we returned it was waiting for us."

Suicide was briefly an option. "We had a coal stove and I said to my husband we should open it up and fill the room with fumes. People would think there'd been an accident. Fumes, not AIDS, would have killed us and then no one could say we'd died of something bad."

He would not consider it. "He looked at me and said: I am sorry I have brought you all this trouble. I said nothing more. I realized I'd made things worse. I understood he was immensely sad."

When they heard the Red Cross was starting an HIV/AIDS peer education programme and was looking for volunteers, they went along to a meeting. "By then we were totally isolated," Gulnar remembers. "We were scared but had no one to tell. We thought there might be others like us at the meeting.

"I cannot describe it ... it was such a release, it felt like we'd found a family. We could get support! It meant everything." The pair of them volunteered.

Soon after that, he fell seriously ill and only Gulnar could continue. "I remember the day of the first training. He was so sick he couldn't move and I wanted to stay home and nurse him. But he said: Go! Don't think about me! You have to attend." Within a month he was dead.

Gulnar still devotes most of her time to the Red Cross. Her story, like those of others, is the testimony of someone who has endured a nightmare but found compassion and friendship, and the means to turn tragedy into social contribution, to make what remains of her life truly count. It is a pact she had with her husband.

Her challenges are not over yet. Stigma still clouds her life, and her HIV status is known to only a few. Her own parents are unaware even of the root cause of her husband's death. How, she wonders, can she tell them the daughter they love, perhaps even her child, have a disease that could take them from them?

A disease, moreover, that many still consider "bad" people bring upon themselves.

Gulnar is also poor and in Xinjiang, in her situation, it is a considerable threat to her life. China, in theory, provides free testing and treatment for people who cannot afford it.

State policy is clear but even if it is implemented - which in parts of the country is by no means certain - poverty often excludes a key element.

Nutrition is required to make the medication bearable. Aside from complex regimes of anti-retroviral drugs, there are those that combat tuberculosis and other opportunistic infections resulting from reduced immunity. All require reasonable, regular nutrition.

In a country where hundreds of millions of people live on less than a dollar a day, many are undernourished and, in the Ili Valley, Red Cross volunteers are among them.

People like Zorem, 33, an openly HIV-positive mother of two who, when all the bills are paid, has 100 yuan (US$12) a month to feed herself and her children. "Sometimes," she says, "it's even less than that. Do we eat meat? Not much when it's 16 yuan a kilo. Fish? Never. I don't know the price, only that I can't afford it."

Gulnar laughs and alludes to the shape of her own thin figure: "I am number one in this programme." She has lost a lot of weight since she first appeared and lives on next to nothing.

The Red Cross does compensate the volunteers with 150 yuan (just over $18) a month, and those who run self-care workshops get another 100 a time. Support for the poor also comes from the state but still Gulnar fails to make ends meet. If her parents did not care for her daughter she would be in serious trouble.

Jobs are scarce in Yining and scarcer still - if not out of reach - for people known to be HIV-positive. Gulnar might earn a monthly wage of 700 or 800 yuan but then she would have to stop volunteering, something she refuses to do.

"What I do is more important than any 'job'. It is important to me because of who I am. It brings me warmth and purpose to my life, and helped me through a terrible time. And now I have been trained to do the same for others."

On 8 May, World Red Cross and Red Crescent Day, the Movement should consider more care for its carers, those courageous, inspirational people who are the essence of its mission and without whom it cannot function.

Already it has the Masambo Fund which provides Red Cross and Red Crescent people with access to anti-retrovirals. But there is nothing to cover ancillary needs with which so many are confronted.

Gulnar and her friends will not survive long unless assured of enough to eat.

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