Seven-year-old Azamat is playing with his siblings at home in a village in southern Kazakhstan, tumbling around on the sofa and giggling. His parents would have found it hard to picture the scene six years ago, when they first learned that their son was HIV-positive.
Azamat was among roughly 150 children caught up in one of independent Kazakhstan’s largest public health scandals. Back in 2006, the children were infected with HIV via tainted blood transfusions administered at public hospitals in Shymkent in the South Kazakhstan Region. The infections peeled back the curtain on a public health-care system that was corruption-ridden, and in which disposable syringes were reused, and blood sold for personal profit. (The names of children and parents in this story have been changed to protect their privacy).
When they learned Azamat, only eight months old at the time, had been infected his parents were “in hysterics,” recalled his mother, Aynur. Such was the lack of information about HIV that, she told EurasiaNet.org, doctors offered the advice: “Eat apples.”
“There was a lot of stress, there was no information, and there was no psychological support,” said Azamat’s father, Marat. The family was plunged into “utter depression.” Other parents recounted similar tales of panic and helplessness.
Things have come a long way over the past six years. Shymkent’s Protection of Children from AIDS foundation has spent these six years lobbying for the childrens’ rights. Now, says foundation head Zhanneta Zhazykbayeva, the children receive state-funded antiretroviral therapy, treatment at a state-of-the-art pediatric hospital, and psychological counseling. Even so, 10 of the infected children have died since 2006.
The families also receive financial support: they got one-off compensation payments of up to $10,000 (some received much less), and get monthly cash subsidies of $160-$225 until their child turns 18. “The state has to be thanked for taking radical measures” in the aftermath of the crisis, Zhazykbayeva said, though it is a constant battle to keep the issue on the agenda.
Astana took quick steps to address the scandal when it first broke in 2006. Sixteen doctors were jailed on corruption and negligence charges, though a few observers believe they were scapegoats for systemic healthcare system failures. Some parents still harbor lingering anger over the fact that five top health officials -- including regional health chief Nursulu Tasmagambetova (sister of Astana Mayor Imangali Tasmagambetov) – received only suspended sentences.
Healthcare officials now say corruption and reckless practices, such as the re-use of disposable syringes and drips, have been stamped out. Official statistics appear to support that contention, as Kazakhstan has registered no case of HIV transmission through hospitals since 2007.
“I really think the government has done a lot to minimize the spread of HIV in hospitals,” Jadranka Mimica, UNICEF’s HIV/AIDS adviser for Central Asia, told EurasiaNet.org. Pediatricians say the treatment now offered to the children is “very good quality,” she added.
Parents interviewed by EurasiaNet.org expressed general satisfaction with the level of healthcare. They identified social stigma about HIV as a major problem, however. Many try to conceal their children’s HIV-positive status. “Society’s mentality isn’t ready,” said one mother, Dinara.
“Counteracting stigma is a lengthy process, it may take a whole generation before we see changes in the attitude … to both HIV and people living with HIV,” Roman Gailevich, UNAIDS country coordinator, told EurasiaNet.org.
“The government could make an important contribution by not adopting, or eliminating existing public policies that unnecessarily discriminate people living with HIV,” Gailevich added. He singled out a little-applied criminal offense for transmitting HIV to others, which “has no public health value,” yet makes people living with HIV “appear to the public more dangerous than they really are.”
Activists were outraged last month when two children were expelled from a private school in Shymkent because of their HIV-positive status. Prosecutors investigated but took no action, inaction that sent “a signal to society that these children can be bullied and discriminated against,” asserted Marat, Azamat’s father.
At public schools, local officials have taken a more active role in battling discrimination: one mother, Asel, recalled that a local school “didn’t even accept my older children” when they learned her youngest was living with HIV. But school administrators backtracked after officials intervened.
Activists say awareness-raising is a vital component in combating stigma and to prevention. “The government invests a lot into prevention activities (notably among key populations at risk of HIV, e.g., drug injectors, sex workers, men who have sex with men),” said Gailevich, but more attention to reproductive health education for teenagers is required.
Figures in a government report presented to the United Nations this March revealed widespread ignorance about HIV/AIDS among young people: Only 32 percent in the 15-24 age group correctly identified methods of curbing sexually related transmission.
State spending on HIV/AIDS programs has more than doubled since 2008, to $34 million last year. As of September 1, there were 19,183 people registered as living with HIV (0.1 percent of Kazakhstan's 17-million population, compared to a rate of 0.6 percent in the United States). Of those registered as HIV-positive in Kazakhstan, 393 are children under age 14. Out of that number, according to Zhazykbayeva, 229 children are living with HIV in South Kazakhstan Region.
For the parents of HIV-positive, the future is a constant worry. They feel their children slipping down the list of state priorities as the years go by, and wonder if free antiretroviral therapy (theoretically available for all people living with HIV in Kazakhstan, though coverage is patchy) will still be guaranteed when their children become adults. “What will be tomorrow, what will be in 10 years?” asks Marat.
Dinara prefers not to dwell on the future. “We try not to talk about [HIV],” she said. “We don’t want to recall it. When you remember, it’s sad. And when you forget, it’s possible to live somehow.”
Joanna Lillis is a freelance writer who specializes in Central Asia.