Growing up positive: Surviving an AIDS epidemic in Kyrgyzstan

Children living with HIV still face stigma and discrimination

Leyla Alyanak
Children and adolescents in a Kyrgyzstan AIDS centre
UNICEF Kyrgyzstan

20 July 2018

OSH, Kyrgyzstan, 20 July 2018 - Nurdin marches up to me and thrusts his hand out in greeting. As we sit down to talk, the well-dressed and reflective 10-year-old alternates between his cell phone and his coloured pencils. There is only one thing he won’t talk about: his HIV status and how he has suffered as a result.

He won’t answer questions about how the other children at his school treat him. Nor will he talk about the pain of being different.

The stigma that surrounds HIV in Osh, Kyrgyzstan’s second-largest city, is still very much alive. If that were not the case, we would have been able to use Nurdin’s real name.

The stigma that surrounds HIV in Osh, Kyrgyzstan’s second-largest city, is still very much alive.

Surviving the epidemic

Nurdin is fortunate to be alive. He is one of many children infected with HIV through contaminated blood in an epidemic that swept through hospitals in Osh between 2007 and 2010.

At the time of the epidemic, lifesaving antiretroviral drugs were rare in this part of Kyrgyzstan.

When they were available, there was often insufficient knowledge among doctors about how to administer them.

And even when doctors had the know-how, parents often refused to take the drugs or give them to their children because they mistrusted the medical system that was believed to have caused the infections in the first place.

Five children died.
 

Adolescents in Kyrgyzstan living with AIDS play a game together
UNICEF Kyrgyzstan
A group of adolescents play a game in the centre that explains the importance of adhering to medication.

From survival to stigma

Osh province has the second highest HIV infection rates in Kyrgyzstan. Needle exchanges, outreach to key populations, and better public information are all part of an ongoing response to improve the situation.

And these efforts are paying off. “Between 2009-2010 we had 250 new HIV infections a year,” says Elmira Narmatova, Director of the Osh AIDS Centre. “This year we have fewer than 100.”

The AIDS Centre provides a child-friendly environment, a diagnosis system to get newborns onto antiretroviral drugs as soon as possible, and a follow-up mobile system for patients. More than 95 per cent of children living with HIV here have access to antiretroviral treatment.

However good the support system is though, the road to a normal life for young people remains challenging.

“We still haven’t dealt with the stigma of the epidemic’s early days and people still cannot accept it is an infection that can affect anyone.”

“We still haven’t dealt with the stigma of the epidemic’s early days and people still cannot accept it is an infection that can affect anyone," says Narmatova. “The stigma has decreased among medical staff, and it is now seen more like a chronic disease. But across society stigma is still strong."


Family fallout

Hadija, Nurdin’s mother, knows about the social stigma first-hand. “When my husband found out, he said I had been unfaithful and left me,” she said.

Hadija believes both she and her children were infected through the maternity ward. Now that her husband has gone, she supports herself as a social worker at the AIDS Centre, helping children to accept their illness.

Another mother, Mahabad, has been slightly more fortunate: at least she can talk about it at home. Her ex-in-laws – her husband left her too – are doctors and understand. Her own daughter who is HIV-positive doesn’t know it yet – but she does ask why she has to take so many drugs.
 

Waiting for acceptance

Nurdin may choose not to talk about it, but he knows his status. Many children do not.

“It is important for these young people to know their status before they reach their teens,” says Cholpon Imanalieva, Health Specialist for UNICEF Kyrgyzstan. “They have a right to know or they will feel lied to. This could even be a trigger for suicide.”

“We worry about how to integrate young people into society,” adds Narmatova. “They are asking their parents, ‘Why am I different? Why don’t my classmates take pills like me?’.”

Telling your child he or she is HIV-positive is painful. For Aygul, another mother at the centre, the hardest part was the discrimination her son faced when teachers and students at his school found out. 

“We need to open up to teachers who spend hours with children, not just to parents and doctors,” she said.

Education, she believes, is the only answer. “Attitudes must change. Rather than stigmatize a child there must be general knowledge about HIV so they can be accepted like all other children.”

“Attitudes must change. Rather than stigmatize a child there must be general knowledge about HIV so they can be accepted like all other children.”

For Nurdin, life is no longer about survival. He has accepted his status but he knows he is different, even if he’d rather not discuss it. The mothers, too, have achieved acceptance. They now wait for only one thing: for society to accept them as well.

 



What UNICEF is doing

UNICEF helps the Ministry of Health in Kyrgyzstan, with the support of UNAIDS and the Government of the Russian Federation, to provide psychosocial support to children and families with HIV. UNICEF also organizes trainings in Osh province for people living with HIV and for non-governmental organizations.

In July 2018, UNICEF and partners organized a camp for adolescents living with HIV from Belarus, Kazakhstan, Kyrgyzstan, Tajikistan and Uzbekistan. It brought together children who already know their HIV status to improve their understanding of the illness, as well as their ability to live with it positively. 

For many of the children and adolescents who attended the camp it was the first time they could talk openly among peers about their fears of disclosing their HIV status to friends and family, their anxieties around their future, and about the discrimination that they experience daily.