KIEV, Ukraine – AIDS drugs turned Andrei from a sickly baby into an energetic toddler, who giggles as he goes sledding in his snow-covered backyard. But the health of the 2-year-old is again at risk — he is out of his medication.
Ukraine has Europe's worst AIDS epidemic — and it risks getting much worse because of drug supply cuts blamed on government corruption and official harassment of AIDS groups and HIV-infected drug users, health experts warn.
Only some 20,000 of Ukraine's 93,000 people with AIDS or on the verge of developing it were getting treatment before the supply disruptions that began about two months ago. Now even they are having trouble accessing drugs. The rest are not being treated because neither the government nor international donors can cover costs.
UNAIDS says 1.3 percent of Ukrainians 15 years and older — 360,000 people — are infected with HIV, the highest rate in Europe.
Local AIDS organizations say the disruptions were caused by government officials demanding kickbacks from drug suppliers and they put thousands, including hundreds of children, at risk. Without usual medication, many patients were put on new drugs that may not be as effective and could prove painful to adjust to.
International aid agencies now threaten to deprive Ukraine, where the government controls AIDS treatment, of crucial AIDS funding until supply chains are restored. About 60 percent of the AIDS budget is funded by the state and the rest by international donors.
If the drugs are not supplied immediately, AIDS therapy will grind to a halt, because the substitute drug supplies are dwindling, too, and thousands of people may die in the coming months, AIDS groups say.
"Corruption at the Health Ministry costs people their lives, and what is even more scary, children's lives," said Dmytro Sherembey of the All-Ukranian Network of People Living with HIV. Sherembey alleged the government usually procures AIDS drugs at 5 or 6 times the market rate, since it works through middlemen who can charge higher prices because their cozy ties to government officials.
The Global Fund to Fight AIDS, Tuberculosis and Malaria agrees that the Ukrainian government has in the past "overspent" on AIDS drugs. The Health Ministry denies corruption and counters that major AIDS drugs buyers such as the Global Fund can get a lower rate simply because they buy more, adding it has already cut drugs costs over the past several years.
According to the World Health Organization, substituting missing medications with similar drugs is tolerable, but still highly undesirable when it's not medically necessary.
All AIDS drugs come with painful side effects, and switching to a new drug after they've adapted to one regime can be difficult for patients to tolerate. The new drugs may be less effective, and dosage can be a problem. The new drugs also cost more, eating into money needed for other patients.
"New therapies cost more money, some patients are going to get sick, some are going to die," said Andreas Tamberg, the Ukraine portfolio manager with the Global Fund.
Andrei's mother Yelena, who spoke on condition their surname name not be published for fear of being stigmatized, said her son used to get his medication in a syrup, which he took twice a day at exactly 7:30 a.m. and 7:30 p.m.
Since it ran out two months ago Yelena, who contracted HIV through drug use, has been giving him one-third of an adult-dosed tablet, which she cuts up herself.
"They have closed their eyes to people like us," Yelena said. "Give us the pills on time so that we stop torturing ourselves and our kids!"
The situation is "worrisome" because of the risk of overdosing or underdosing the child since it is very hard to split the tablets accurately, said Shaffiq Essajee, a pediatric HIV treatment specialist with the World Health Organization. Too much of a drug may cause toxicity and too little may cause the virus to develop resistance for years to come, he said.
"You can create a lifelong problem in that particular child," Essajee said.
The Global Fund said last week that the Ukrainian government risks losing a $305 million five-year grant for AIDS prevention and harm reduction programs due to start next year if it does not restore the drug supplies and stop its harassment of drug users with HIV and the non-governmental groups trying to help them.
The government has admitted it was late in procuring the drugs, but sought to downplay the supply problem, claiming only dozens were affected and promising the drugs would be supplied soon.
In Ukraine, where health care is free, the state has committed to procuring HIV medication and providing treatment. In the West, HIV drugs are usually purchased by pharmacies and paid for under national insurance schemes or private insurers.
Moreover, the Health Ministry said the supply crisis has actually been a good thing, because delays allowed the government to invite new bidders, lower costs and buy more drugs for more patients this year.
"You cannot look at the problem from the point of view of advocating for the patients — we as government employees look at it on a global scale," said Svetlana Cherenko, an AIDS specialist with the Health Ministry. "The problem itself is very small compared to what could have been had we purchased them (the drugs) at high prices."
Meanwhile, the government has sent prosecutors to search the offices of AIDS support groups across the country and dispatched police to collect personal information from drug users in methadone therapy, including their medical records and whether or not they have HIV, even though such information is confidential.
In the eastern Sumy region, the government denied patients their daily methadone dose until they answered all the questions, an activist said. In the southern city of Odessa, one HIV-positive man's said police disclosed his status to his neighbors, prompting his wife and son to flee in shame.
Experts say such harassment will send these people back into the shadows, returning them to dirty-needle drug use and further inflaming the HIV crisis as it increasingly spreads from risk groups into the general public, experts say.
"Efforts at trying to suppress programs or harass patients just give the virus a better chance to spread," said Tamberg of the Global Fund.
Interior Minister Anatoly Mohilyov said he is collecting personal information from drug users "because these people are from a risk group and we must know about them."
The Prosecutor General's Office declined to say why it is investigating AIDS groups. The non-governmental groups say the government is tired of their criticism.
"Our organization is a threat to all the corrupt schemes that exist in the health care system," said Sherembey of the Network. "They don't want to have opponents like us."