Tuesday, May 07, 2013

Ukraine's Youngest HIV Campaigner

KIEV, Ukraine -- Ukraine is suffering from one of Europe's worst Aids epidemics but most people with HIV have no access to the drugs that would enable them to lead normal lives - a fact which one teenager, among others, is keen to point out.

Liza Yaroshenko (L) with her adoptive mother Oksana Aligeva.

As we sit drinking tea in the kitchen, Liza Yaroshenko lays out her pills in neat piles.

Some are white, some are yellow and some are in a transparent box marked NIGHT.

Liza, aged 14, carries the HIV virus that causes Aids so her life depends on these anti-retroviral drugs.

They have to be taken at exactly the same time, three times a day.

I wonder how she remembers - does she have an alarm on her phone to remind her? 

"Oh yes," replies her adoptive mother Oksana Aligeva, "an alarm on two legs - me!"

Liza does a classic teenage roll of the eyes, but she knows she can't afford to get the timing wrong.

"The virus can mutate and the pills could stop working," she explains.

Liza also knows she is lucky to have the medicine.

The World Health Organization has said Ukraine suffers from one of the worst Aids epidemics in Europe and not enough is being done to fight it.

Only a third of the officially registered 120,000 people living with HIV receive the drugs, which usually allow them to lead normal lives.

But the Aids Alliance - the biggest independent organisation tackling the disease in Ukraine - estimates that the infected population is at least twice that size.

That suggests that just one in six people actually get treatment - one of the lowest levels in the world.

By contrast, some sub-Saharan African countries, such as Botswana and Rwanda, manage to supply 80% of their HIV-infected populations with the life-saving drugs. 

Last autumn President Viktor Yanukovych declared that tackling infectious diseases was a priority but the government allocated no funds in 2013 to fighting hepatitis and only 40% of the sum the president proposed for Aids and tuberculosis.

That's when Liza decided to speak out.

Backed by a patients' lobby group, she went into Ukraine's parliament, the Verkhovna Rada, and stood in front of a microphone.

In a faltering yet determined voice, she urged members to block the draft budget. 

"Without treatment many parents and children will die from this illness," she said.

"I am begging you not to vote for this budget so that what happened to me will not happen to other children."

Liza was six years old when she lost her mother to Aids.

Like tens of thousands of Ukrainians, Liza's mother contracted HIV while injecting a cheap heroin substitute made of liquid poppy straw.

The virus often spreads when users share needles.

But the opiate solution, known as shirka, can also be contaminated by dirty equipment used by the dealers, or even the use of blood as a mixer.

Liza says her mother spoke fluent English and worked for a while as a translator but then she met a man who introduced her to drugs.

"All of my father's relatives were dealers - it was the family business," Liza says.

She remembers queues of addicts waiting in the courtyard outside the flat for their fix.

Liza's mother was eventually sent to prison for possession and served a three-year sentence. "

After her release, Mum tried to give up but dad soon got her hooked again and then she fell ill," Liza says.

"I don't think she knew about anti-retrovirals.

It was like a myth - we'd heard there were such medicines but they cost so much that ordinary people didn't even think of trying to get hold of them."

In 2005, on the same day her 27-year-old mother died of Aids, Liza found out about her own status.

"We were in the hospital and my grandmother was called into the administrator's office. When she came out she burst into tears and I thought what terrible thing did they say to her to upset her like that?"

Liza was kept in hospital for eight months following her diagnosis because she ran abnormally high temperatures.

One of the first patients in Ukraine to receive anti-retroviral drugs, she has since been fit and well.

She has no contact with her father and when her grandmother became too infirm to look after her, the authorities were preparing to send her to a children's home.

But then Oksana and her husband, who had no children of their own, adopted her. 

Although Oksana had imagined adopting a much younger child, she and her husband, Eldar, were touched by Liza's story and felt they could provide a good home for her.

Source: BBC News

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