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Last Updated: Tuesday, 2 December 2003, 16:27 GMT
Lonely lives of Ukraine's HIV children
By Svitlana Pyrkalo
BBC, Donetsk

Six-year-old Vita lives in a specialised orphanage for toddlers with HIV in Ukraine's industrial eastern capital, Donetsk.

She should have moved two years ago to an orphanage for older children, but none would have her.

If you are a child with HIV in Ukraine your options are limited, or to be more accurate, you have none at all.

HIV-positive Alyona
Alyona and the other children refer to themselves in the third person
Vita is happy to see a visitor. She grabs my jumper and calls me "mama", as they all do, because their own mothers, mostly drug users, have left them.

For them "mama" is any female visitor to the orphanage.

She also doesn't know the word "I". All the children in the orphanage refer to themselves in the third person.

It is as though they are not individuals, but faceless soldiers in a battle for life.

"Mama, come again to Vita", she says.

"Mama, where is Alyona?" demands another little girl who wants to see a picture of herself on my digital camera.

Funding

They rarely see anybody from outside.

Some of them have grandmothers who come to see them, but they all love extra visitors.

A year ago there was little hope for Vita and 20 other children at the orphanage. They all had Aids.

Now, after a course of anti-retroviral drugs, recently available thanks to a German pharmaceutical company, they are well enough to go to school.

You know the saying, the richer the devil, the greedier he becomes? Some people help us, but not the super-rich
Dr Volodymyr Vovk
However, it is the same story again - no school will have them.

The doctors at the orphanage struggle to provide the children with enough food and hot water in winter.

"We don't complain about funding, but we don't have nearly enough money," they say.

Why don't they complain, I ask.

"What's the point?" says Dr Volodymyr Vovk. "There's no money in the government budget."

But the Donetsk region is home to some of Europe's richest people, I point out.

"You know the saying, the richer the devil, the greedier he becomes?" asks Dr Vovk.

"Some people help us, but not the super-rich."

In Ukraine HIV-Aids is known as "the Plague of the 20th Century".

Poor disease

This is all most people know about it. There is a lot of anecdotal evidence of discrimination against people who live with HIV, children included, but only a few cases make it to court.

HIV is very much a poor people's disease in Ukraine, and they don't have the money to hire lawyers.

Many are also scared to admit their HIV status and would rather keep silent.

There is an increasing number of people who live normal lives with HIV.

Ukrainian children
Some children in the Ukraine still are not getting treatment.
But until this year only children received anti-retroviral drugs from charities and the state. Everyone else could only pray for help.

Now there is money from the Global Fund for Aids, TB and Malaria. Ukraine received the first portion just recently.

Before that, those with HIV got only occasional help, mostly from NGOs and foreign charities.

But foreign charities cannot change social attitudes.

Teachers and nurses are scared that parents will learn that their sons or daughters are close to an HIV-positive child, and do not want the trouble of dealing with the situation.

For example, parents may fear the risk of the children fighting and biting each other, said one teacher.

Isolated

One school fight I heard about in a Donetsk Aids centre didn't involve HIV-positive children but could still have been life-threatening.

"A boy was pushed against the wall in the school courtyard, and hurt himself on a syringe that somebody had stuck in between the bricks," said Mykola Grazhdanov, who runs the state centre for prevention and treatment of Aids.

"Probably some drug addict had injected drugs in the school courtyard and got rid of the syringe in this way.

People here - staff in the orphanage included - don't know much about this disease
Doctor in Ivano-Frankivsk
"The boy and the syringe were brought to us immediately, and unfortunately we found enough HIV virus in the syringe to infect the boy.

"We gave him anti-retroviral drugs straight away. They may or may not stop the infection, we'll only know in three months."

Many people believe the overall situation has improved in the last year.

In two orphanages I visited no deaths were recorded this year, thanks to the new anti-retroviral drugs. But some children still are not getting treatment.

I heard about one little boy in an orphanage in Ivano-Frankivsk region in Western Ukraine.

A doctor from the newly opened local Aids centre told me that the boy was the only child with HIV in the orphanage. He has Aids and has been totally isolated from human company all his life.

"He sits in quarantine and plays all by himself," the doctor said.

"People here - staff in the orphanage included - don't know much about this disease. We hope to get the drugs for him soon."

If you have any comments to make in response to this article, you can send them to us using the form below. If you would like to take part in one of our programmes on HIV/Aids, please include your phone number. Your personal details will not appear online.


Your comments:

Absolutely heartbreaking. God bless them all.
Eduardo L Zapata, Milwaukee, USA

In this day and age where money is so easily generated by big corporate companies and individuals how can such a situation arise. It sounds so hopeless and when you reach the line about a child who is forced to play on his own you realise how much we in the supposed better western world have missed the point. Who wants to be super rich when such things exist?
Kevin Cohen, London

A moving report - very thought provoking.
P Bullough, London






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