Originally written by Daisy Sindelar & Oksana Andruschak for The Atlantic.
The region is one of only two in the world where HIV mortality and infection rates are getting worse.
KIEV, Ukraine — Natalia Kovnir says she’s heard a “million” horror stories from acquaintances about the moment they found out they were HIV-positive. Her story, she adds, is no different. “I found out about my diagnosis in 1997. I was taking drugs,” Kovnir says. “The doctor uttered this phrase — I’ve never forgotten it, in all these years. He said: ‘It’s your own fault. You got yourself into this. You’ll live a couple more years, and then we’ll be saying goodbye.’”
Kovnir has defied her doctor’s grim prognosis. Fifteen years later, she is one of 230,000 people living with HIV in Ukraine — a country at the epicenter of a region that remains stubbornly resistant to remarkable progress elsewhere in the battle against AIDS.
The United Nations AIDS agency (UNAIDS) says rapid improvements in treatment and prevention measures have reduced the rate of HIV infections by more than 50 percent in 25 countries across the world — including in sub-Saharan Africa, where the disease has proved most devastating. An estimated 34 million people are currently living with HIV around the globe. But in a report timed to mark World AIDS Day on December 1, UNAIDS says it’s now realistic to think about “getting to zero” — zero new infections and zero AIDS-related deaths.
That optimism, however, does not extend to the former Soviet space. Together with the Middle East, it remains the last place on earth where the AIDS crisis is getting worse rather than better.
Bringing It Home
In the past decade, post-Soviet countries have seen the rate of HIV infections rise steadily, from 130,000 a year in 2001 to 140,000 in 2011. The number of AIDS-related deaths has also seen a 21 percent spike in the past six years. (The UNAIDS regional statistics cover a total of 28 countries in Eastern Europe and Central Asia, including the Balkans and former Soviet states now in the EU — where the rates of infection are far lower.)
Jean-Elie Malkin, the UNAIDS director for the region, says the root of the problem lies in Russia and Ukraine but that the disease is quickly crossing borders. “Russia and Ukraine together represent more or less 90 percent of the epidemic in the entire region. But this increasing epidemic is seen in all the countries of the region,” Malkin says. “There’s not only an increasing epidemic among the vulnerable population of IDUs — injecting drug users — but from the IDUs, the epidemic is now moving to the general population through their sexual partners.”
To some degree, migration has contributed to the spread of the virus. Increasingly, labor migrants from Tajikistan and Armenia are contracting the virus through drug use or sexual contact in Russia or Ukraine. They transmit the infection to wives or other sexual partners back home, who then run the risk of passing it on to their children. But to a far greater extent, it is poverty and government inaction that is driving the problem.
Exposing a ‘Hidden Population’
Elsewhere in the world, needle-exchange programs have led to a significant drop in HIV infections among IDUs. And consistent access for HIV-positive patients to antiretroviral drug therapy has been proven to reduce by more than 90 percent so-called “onward” transmissions from one sexual partner to another, or from a mother to her newborn.
Across most of the former Soviet Union, however, only one-fourth of the region’s estimated 1.4 million people living with HIV have access to treatment. The region has also been notoriously lax on implementing clean-needle programs — a reflection of the stigma and discrimination still faced by what UNAIDS calls the region’s “hidden population” of drug users. AIDS experts say the grim situation in the post-Soviet region is especially regrettable in light of the substantial advancements seen elsewhere in fighting the disease.
Although an effective vaccine has yet to be developed, the past several years have seen dramatic improvements in access to affordable antiretroviral drug treatment — including Truvada, the first preventive treatment for HIV-negative people, which was approved for sale in the United States this year.
Mitchell Warren, the executive director of AVAC, a New York-based global advocacy group for HIV prevention, says there are currently 8 million people worldwide receiving antiretroviral drug treatment. He calls that a “huge” achievement. “Eight million doesn’t begin to reach the number of people that need treatment. So we still have a gap to fill,” Warren says. “But the fact that 8 million people who are HIV-infected are living robust, healthy lives — not only in the U.S. and Europe, but around the world — is just a remarkable advance. And remember that a decade ago, people said it could never happen.”
Living With It
The struggle is likely to continue in the post-Soviet countries of Eastern Europe and Central Asia, where at least 60 percent of HIV funding still comes from external donors and where NGOs, rather than governments, have taken responsibility for implementing education and treatment programs.
In Ukraine, just 2,000 people currently receive free access to antiretrovirals. But Kovnir says public awareness has improved immeasurably since she first got her diagnosis as a frightened 24-year-old with just a “couple more years” to live. She recalls being devastated to find her mother furtively scrubbing down the kitchen with disinfectant one night after she visited for dinner. Now, 15 years later, she says even her 11-year-old nephew is aware of her condition and often reminds her to take her pills. Kovnir, now 41, lives a healthy, active life. She has an HIV-negative boyfriend, and she works in Kyiv as a regional development specialist with the All-Ukrainian Network of People Living with AIDS.
The Ukrainian government has increased tenfold its domestic investment in HIV treatment over the past several years. But Kovnir says officials have much more to do to provide sufficient drug treatment to all HIV patients — and reverse the country’s dubious distinction as the site of the highest rate of HIV infection in the post-Soviet region. “A person can live many, many more happy years. They can give birth to normal, healthy children. And they can help an enormous number of other people,” Kovnir says. “If our government pays attention to what we’re saying — that the spread of HIV infections is dropping thanks to the fact that people are receiving treatment — if they listen to us, provide some financing, take some kind of action, then there’s the possibility that this epidemic will start to slow down.”
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