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'Life-Or-Death' Showdown Pits Parents Of HIV-Positive Kids Against Kazakh Officials

An HIV-infected child draws a Red Ribbon, the international symbol of HIV and AIDS awareness, at the Center for Maternity and Childhood in Shymkent in this 2010 photo.
An HIV-infected child draws a Red Ribbon, the international symbol of HIV and AIDS awareness, at the Center for Maternity and Childhood in Shymkent in this 2010 photo.

It is arguably the most macabre example of medical malpractice in Central Asia's post-Soviet history.

A decade ago, around 150 children in the southern Kazakh city of Shymkent were infected with HIV, the virus that causes AIDS, when they were given tainted blood, in many cases as part of a kickback scheme. At least 10 of the children died soon after their infection.

Now, 10 years later, activists and officials in the Southern Kazakhstan Province warn that some of those same children are needlessly being exposed to danger, as a handful of parents are refusing vital medical treatment aimed at preventing the immunodeficiency virus from developing into AIDS.

Kazakh laws allow health officials to impose compulsory medical treatment in some cases, and authorities say they are considering just that if the parents don’t change their minds.

All but one of the families approached by RFE/RL’s Kazakh Service declined to talk about their decisions. On condition of anonymity, one father said he and his wife were no longer giving their son the HIV medication because it was difficult to administer and had worrying side effects.

“He can’t independently drink or eat,” the father, from the town of Turkestan, said. “We tried to give him the HIV drugs, but he can’t swallow the tablets. They get stuck in his throat and he also gets a rash on his body.”

Some of the parents have cited unspecified “religious reasons,” while others say their child’s condition is “stable,” said Zhannetta Zhazykbaeva, the Shymkent head of Protection Of Children From AIDS, a foundation that lobbies for the rights of HIV-positive children.

Zhanetta Zhazykbaeva, the Shymkent head of the NGO Protection Of Children From AIDS (file photo)
Zhanetta Zhazykbaeva, the Shymkent head of the NGO Protection Of Children From AIDS (file photo)

The group said at least nine families in the province are currently declining potentially life-saving medical treatment for their infected children.

One family is from the Saryagash district and has two HIV-infected children, one of whose condition is said to be deteriorating.

"They don’t even come to provide samples [for check-ups to monitor their children's condition]," said Murat Agabaev, deputy head of the Shymkent Mother and Child Health Center. "Local doctors accompanied by police went to their homes to get samples."

Zhazykbaeva’s NGO has sent a letter to the Saryagash governor’s office urging officials to intervene -- through police and prosecutors -- and convince them to let their 14-year-old child receive medical treatment.

Zhazykbaeva said she believes it is a matter of life or death.

“We spoke with the mother and explained to her the seriousness of the risks. However, she didn’t change her mind,” Zhazykbaeva said.

Zhazykbaeva wouldn't disclose the family's identity, citing medical confidentiality laws aimed at protecting patients’ and families’ privacy.

Fearing social stigma and exclusion, families of individuals who are HIV-positive are frequently reluctant to reveal their loved ones' status.

The father who spoke to RFE/RL said that he and his wife had stopped their 13-year-old child from taking the HIV-related medicines. His son was severely ill with limited mobility, he said, adding that the boy had suffered a lot and that he didn’t want to add to his child’s pain.

In other cases, it remains unclear when or exactly why the parents stopped the treatments.

Some doctors suggest their parental rights should be taken away for potentially putting their children’s lives at risk.

Government officials in the region said they “are trying to resolve the situation according to the law.”

“We won’t just sit and do nothing just because parents don’t allow treatment,” said Kudret Kystaubaev, the deputy governor of Saryagash. “We have instructed law enforcement agencies to study the situation. We might resort to compulsory treatment if that becomes necessary.”

Authorities and activists also said “a lot of work has been done to raise awareness among the parents.”

The South Kazakhstan region found itself engulfed in the HIV epidemic in 2006 when it emerged that dozens of patients in the state-run children’s hospital were infected with the virus through transfusions with tainted blood.

Twenty-one medical workers and health officials went on trial on negligence and corruption charges. Several doctors received prison sentences.

The victims’ families were given one-off financial compensation of up to $10,000, while the children were assigned monthly cash allowances until they reach the age of 18.

The youngest patient was 2 months old, while many others were toddlers.

Those who survived face a lifetime of constant medical treatment. Many parents have spoken out about social stigma and discrimination.

Officials said only a handful of the Kazakh children infected in the decade-old case are aware of their HIV-positive status, as others are still deemed by specialists to be too young to be told about their medical condition.

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    Dilara Isa

    Dilara Isa is a correspondent for RFE/RL's Kazakh Service.

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    Farangis Najibullah

    Farangis Najibullah is a senior correspondent for RFE/RL who has reported on a wide range of topics from Central Asia, including the impact of Russia’s invasion of Ukraine on the region. She has extensively covered efforts by Central Asian states to repatriate and reintegrate their citizens who joined Islamic State in Syria and Iraq.