Living With AIDS In Ukraine

KIEV, Ukraine -- Inadequate medicine, ineffective cooperation and low awareness exacerbate Ukraine’s soaring infection rate. If there’s anything worse than having AIDS, maybe it’s having the disease in Ukraine. Discrimination, unstable supplies of critical medicine and poor awareness are still prevalent.

Maksym Nikolayenko, an AIDS patient who also works at the government-owned Lavra AIDS Clinic at the Institute of Epidemiology and Infectious Diseases, says Ukraine needs to make more progress in fighting the epidemic.

Maksym Nikolayenko would know. He is among those HIV-positive Ukrainians whose virus has progressed to AIDS. He is no longer afraid or silent. “I am tired of hiding it. I’ve realized if people keep silent, AIDS will choke all of us,” Nikolayenko said.

Nikolayenko understands why other HIV/AIDS patients are still afraid and silent. He also doesn’t recommend that all HIV-positive people speak out and reveal their status. “Discrimination is all over the country,” Nikolayenko said. “And it’s scary.”

Ukraine observed yet another World AIDS Day on Dec. 1 with one of the fastest-growing infection rates in the world. The numbers are so alarming that many health experts still worry about whether the disease will spread from high-risk groups, where it has been concentrated, and start assuming African-like dimensions by spreading to the general population as well.

Roughly 1.6 percent of the nation’s adults, some 440,000 people, are believed to be HIV positive in Ukraine. Nikolayenko thinks the nation, both its people and government, are still living in a dream world about the epidemic.

“Both we [people] and they [government authorities] are used to thinking that AIDS is somewhere far away,” involving only people who use drugs and engage in prostitution," Nikolayenko said. “The situation is much worse. My generation doomed itself to AIDS through drugs. Now a huge percentage of those infected do not have any relation to drugs, homosexuals or sex workers.”

The figure of 440,000 HIV-positive people is an expert guess. So is the estimate that only one in four HIV-positive people knows their status.

The good news is that having HIV and AIDS is no longer the death sentence that it was, if people receive proper treatement. While no vaccine has been found and there is still no cure, people are living increasingly longer with the virus. They are even living normal life spans. But treatment is expensive and still beyond the reach of many people.

Nikolayenko learned he was HIV positive 13 years ago, but HIV is not his only positive attribute. His optimistic attitude and broad smile help him work with others of the state-run Lavra AIDS Clinic at the Institute of Epidemiology and Infectious Diseases. This is the place where Nikolayenko and others undergo anti-retroviral treatment.

Back in 1995, when Nikolayenko discovered that he was HIV-positive, “it sounded like a death sentence. HIV or AIDS: It did not make any difference.” It took him another decade to quit drugs and start anti-retroviral therapy. By then, in 2005, his HIV had progressed to full-blown AIDS.

What he described as “absolutely inadequate treatment” at the provincial level forced him to seek help from the Lavra Clinic, Nikolayenko said. “We are all lucky to be here and have these doctors.”

Katya, another Lavra Clinic patient, came to the Kyiv treatment center after being charged for supposedly free medical treatment at a provincial hospital where she was living. Katya, who didn’t want to be identified, dreads divulging her HIV status. She has an eight-year-old son and she was fired from work once after her employers learned of her illness.

“Discrimination is particularly severe in small towns,” Nikolayenko said. “People are being refused medical care. Their status gets immediately divulged by hospital personnel. Some are forced to search for medical help in other cities.”

Svitlana Antonyak, a physician and head of the HIV/AIDS department at Lavra Clinic, said the “unwillingness of those in power to notice the problem” blocks progress against the disease. “Among our patients, there are people close to power or in power and they all are terribly afraid to reveal their status,” Antonyak said. “The fear is not groundless. There is stigma at hospitals. There is stigma in society.”

Antonyak said that HIV/AIDS patients also fear not getting medications on time, as state managerial skills leave much to be desired.

Nikolayenko agreed. “People are lying in hospitals with acute need for medicines. And there are just no medicines. They were not bought or delivered or were delivered too late,” he said. “To take away therapy means to put me back into the condition I was before. It’s the same as taking away insulin from a diabetic or inhaler from an asthmatic.”

Today, about 10,000 HIV/AIDS patients are undergoing anti-retroviral therapy in Ukraine. More than 6,000 patients were supported by the International HIV/AIDS Alliance. It is, in turn, sponsored by the Global Fund to Fight AIDS, Tuberculosis and Malaria, the international institution that has committed $14.9 billion in government and private donations for prevention, treatment and care programs worldwide.

The $100 million Global Fund grant in Ukraine is expected to be spent by year’s end. The patients that the fund has been supporting will now become the government’s responsibility, a prospect that alarms health advocates.

“Today, Ukraine withstands the epidemic only because of foreign help,” said Andriy Klepikov, executive director of the International HIV/AIDS Alliance in Ukraine. “Without Global Fund support, the country would face catastrophe. The $100 million Global Fund grant enabled us to achieve significant results: we managed to slow the growth of the AIDS mortality rate, and achieved a 4 percent decrease in AIDS incidence (3,589 new AIDS cases were registered over 10 months of 2008 compared with 3,743 cases over the same 2007 period.)”

Klepikov said the state should concentrate on at-risk populations.

Antonyak said that AIDS patients need stability in treatment that the government hasn’t been able to provide.

“Anti-retroviral therapy is a lifetime treatment which can not be interrupted under any circumstances. However, state purchases [of medicines] are unstable,” Antonyak said. “Only 50 percent of the basic component for the anti-retrovirus treatment was delivered to regions. Some medicines are completely absent. Ukraine doesn’t have much experience in state HIV/AIDS epidemics] treatment. And we need to admit that. The situation requires structured cooperation among the Ministry of Health, HIV/AIDS centers, Ministry of Finance, etc. It’s incredibly important that authorities undertake political responsibility.”

Torsten Brezina, a team leader of the German Agency for Technical Cooperation (GTZ) in Ukraine, noted the same problems. “Cooperation among the ministries, state and NGOs needs serious improvement. A comprehensive informational campaign would also be very beneficial. These are the obstacles that need to be removed for HIV/AIDS prevention to be effective,” Brezina said.

The government is in the process of adopting a five-year national prevention program through 2013. “The program stresses preventive measures with an active role for mass media, the church and all educational establishments from primary schools to universities,” said Olena Yeshchenko, deputy head of the Commission of HIV/AIDS and other infectious diseases prevention at the Ministry of Health. “The goal is to promote a safe lifestyle and high standards of morality among youth. The second aim is working with most-at-risk groups” and care of those dying.

Altogether, however, Ukraine hasn’t made significant progress in its fight against AIDS since last year, when President Victor Yushchenko on Dec. 4, 2007, blamed the Cabinet of Ministers and Health Ministry for the biggest failure in the battle against HIV/AIDS. “Moreover, this failure is tragic because it is based on a system of errors, criminal inactivity, corruption, the misappropriation of state funds and their irrational use,” Yushchenko said.

While the president’s press secretary couldn’t be reached by deadline, the official presidential website cites the main improvement over the previous one as access to therapy among HIV patients. Last year, 7,700 received treatment. This year, that number increased to 10,000 people – but a total of 91,000 people needed treatment, according to estimates.

But Yushchenko still faults the Cabinet of Ministers and the National Commission on HIV/AIDS as working ineffectively and non-transparently. Most importantly, Yushchenko said, not enough money is being spent to provide treatment to all HIV-positive and AIDS-suffering people.

Source: Kyiv Post

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