Anger over HIV scandal's child victims

The hum of radio sets and the murmur of conversation, the odour of sewage and cooking rice all seeped through the thin walls of the dilapidated hallway.

Sayat contracted HIV via a blood transfusion for pneumonia
An ageing Kazakh woman in a colourful headscarf put a finger to her wrinkled mouth, signalling us to be quiet, as she led us up stairs to her biggest secret.

The secret was a baby boy, fast asleep on a cheap mattress in a shabby room.

His chubby face looked healthy, peaceful and happily oblivious to the poverty and tragedy around him.

Sayat is 18 months old and he is HIV positive.

Anger and shame

His story dates back to February 2006, when he was taken to a hospital for a minor surgical procedure.

"Most of us have lost not only children but husbands too"
Aynura

It was there, his grandmother says, that he contracted pneumonia for which doctors prescribed a blood transfusion.

Seven months later in September 2006, HIV was discovered in blood banks across the region and Sayat became one of 93 children who tested positive for the virus.

Since then eight babies have died, 12 have infected their mothers and although health officials say they have now cleaned up the system, new cases continue to emerge all the time.

"I keep thinking what kind of future he could have, and I can't see any future for him," she says. "And I keep thinking why, why did this happen?"

Ninety-three families in Shymkent are asking the same questions.

Theirs is a story of anger, confusion and shame. In Central Asia, HIV is not just a disease, it is also a huge stigma.

Fearful of their neighbours, most families refuse to speak to journalists. Those who do, do not want their names revealed or their children filmed.

Thirty-two-year-old Aynura no longer has a child and, she says, she has nothing to lose.

She sits up straight in her chair, staring at photos of a once happy family. Not only is her son dead, but her husband has also left her.

"He does not believe that I don't have HIV," Aynura says "Most of us have lost not only children, but husbands too."

A profitable business

This unprecedented outbreak has already destroyed dozens of lives, it has revealed a corrupt and reckless healthcare system and, in a region where HIV infection rates are rapidly growing, it has also raised some pressing questions.

Among them is why blood transfusions are so popular here.

The investigation into this outbreak alleges that the procedure was often not only not justified, but even repeated several times in the course of one treatment.

Many in Shymkent believe they know why.

Blood, they say, is a profitable business, without regulations. One can buy it cheaply, either from the poor in the street or in neighbouring Uzbekistan, and then re-sell it for four times the price.

In grey and provincial Shymkent 21 medical workers are currently on trial over the outbreak.

No courtroom was big enough to accommodate their case and so the hearings are taking place in a dilapidated concert hall of one of the administrative buildings.

Expensive cars belonging to the defendants and their lawyers are parked outside the gray building. The victims, represented just by one lawyer, make their way mostly on foot. Many come from the villages outside Shymkent.

Inside, 19 doctors and medical officials sit on wooden benches. In an iron cage next to them two women, who unlike the others are already under arrest, lower their heads as the judge calls their colleagues to come forward.

From across the hallway, parents of the victims listen as one by one the doctors deny the charges that range from corruption to re-use of disposable equipment to recklessness, malpractice and illegal trade of donor blood.

What lies ahead?

"None of these doctors are any longer in administrative positions but if you can believe me, some of them are still practising," says Kanat Alseytov, one the very few here who wants people to see what happened to his son.

When Baukhzan was diagnosed, Kanat set up a foundation that raises money and lobbies for the rights of the children. It is largely because of this work that the outbreak received public attention.

As two-year-old Baukhzan chases his twin sister across the living room, Kanat, his wife and the grandparents talk about the uncertainty that surrounds the government aid the victims are currently receiving, and the desperate need to get rid of the social stigma.

"We need to think ahead," says Kanat. "How long will we have the aid for? What kind of aid will be available for people who are being diagnosed now? And the future of these children too?"

"People are pointing fingers at us already, what will happen when these kids have to go to school?"

In his view, it is the widespread corruption of the entire healthcare system that is responsible for ruining Baukhzan's future.

"Imagine the healthcare budget is an apple," Kanat explains "First the Ministry of Health takes a bite, then the regional government, then the municipality and so on. By the time the apple reaches the hospital, only the core is left."

Drugs and prostitution, lack of education and poverty - these are the common reasons behind the growing rate of HIV infection across Central Asia.

The Shymkent outbreak shows that what goes on behind the hospital walls could be just as dangerous.