Ukraine's youngest HIV campaigner
- 9 April 2013
- From the section Magazine
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.
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.
The authorities blame lack of funds for the shortage of drugs but many say mismanagement and corruption also play a part.
Andrei Klepikov of the Aids Alliance in Kiev says that in 2004, the government bought anti-retroviral drugs at 27 times more than the market rate.
As a result the Global Fund for Aids, Tuberculosis, and Malaria, backed by the former Microsoft boss Bill Gates, cut its grant to the Health Ministry and rechanneled the money through non-state organisations like the Alliance instead.
"It's like buying a piece of bread for £100! It's impossible but somehow the Ukrainian government managed to do this. So of course Global Fund was shocked, literally shocked, and this was the first ever grant given to a country that had to be suspended," says Klepikov.
The Health Ministry denies corruption and argues that major buyers such as the Global Fund can get a lower rate because they buy in larger quantities. It also claims to have cut drug costs over the past several years.
But demand for the drugs still vastly outstrips the supply.
"The numbers of HIV-positive people are growing all the time but not the quantities of medicine to treat them", says Oksana. "And it's terrible that lots of people who have found out about their status can't get treatment."
Oksana says she and Liza were disappointed that deputies in parliament ignored Liza's appeal.
However, three weeks later the President Yanukovych signed a decree instructing ministers to come up with a new budget providing medical care for people living with HIV and Aids. This amended budget will be submitted to parliament next month.
But there is a new source of worry for people with HIV - a law that came into force last month, requiring importers of foreign medicines to obtain additional licences to operate in the Ukrainian market.
The government argues the licensing procedure will assist quality control and boost domestic production. But virtually all anti-retroviral drugs come from abroad at present and many people with HIV fear they'll be left without the life-saving medication.
Dmytro Sherembey, the HIV-positive head of the patients' pressure group which helped organise Liza's appeal in parliament, the Ukrainian Community Advisory Board, predicts licences will be issued to those who pay bribes.
"It will bring a profit to the officials and will give them the chance to control Ukraine's pharmaceutical market. They can give licences to those they want to give them to, and refuse it to others…
"People in Ukraine will die from this law."
Although the state has stepped up spending on anti-retroviral drugs it does little to bring down the number of new infections.
"Do you know how much the government spends on HIV prevention?", asks Andrei Klepikov of the Aids Alliance. "Zero… literally zero."
Work on the front line of the epidemic among the high risk groups such as addicts and prostitutes is left to organisations like the Alliance, he says. The group offers free HIV tests, condoms and crucially - clean syringes.
In 2012, for the first time, there was a slight drop in the number of newly registered cases of HIV in Ukraine.
But the Aids epidemic, originally fuelled by drug use, now appears to be spreading to Ukraine's general population through sexual contact. The stigma associated with the disease is so strong that many are discouraged from even approaching a doctor.
I ask how Liza's classmates reacted when they saw her addressing the MPs on television.
"Most of my friends already know about my status," she says. "On the whole people reacted very well and some friendships actually got stronger than they were before."
Oksana proudly adds that pupils voted Liza president of the school - a position similar to head prefect - after her speech in parliament.
But some of the teachers were less supportive.
One told pupils the HIV virus can be spread through sneezing and holding hands.
"I told her that was rubbish", says Liza, "and then I was called into the head teacher's office for a ticking off. But I hate it when people spread false information - I can't keep quiet."