Mykolaiv's nighttime streets are pitch-black beneath a thick canopy of trees -- the town council cannot afford street lighting. Neon-lit bars for the newly rich "new Ukrainians" make island of light between which cars cruise slowly, sometimes stopping to pick up one of the 150-odd girls and women who work Lenin Prospekt in the city's center.
Some of the sex workers are students earning money for their tuition, but the majority are unemployed. Many are single mothers, and virtually all are addicted to poppy straw, a cheap heroin substitute that Ukrainian drug users make at home and inject.
"Only about ten girls here don't shoot up, " says Lilya, a thin, febrile woman in her thirties. "We use drugs just so we can stand here."
Lilya says she has been an injecting drug user since the mid-1980s, when the town, otherwise famous for its shipyards, began to get a name in the Soviet Union for drugs.
"In Mykolaiv 15 years ago, it was fashionable," she explains. "Nearly everyone injected. Now lots of them have died. Of drugs, of illness, collapsed veins." Her husband is one of those who died, leaving her with an 11-year-old son to support.
"AIDS only appeared here two or three years ago -- earlier we never heard anything about it," she continues. "It was in the West that you had it already for a long time. Here, everything was quiet. Of course I'm afraid of it, I'm afraid of everything. But fear doesn't bring me anything. All the same, I have to make money."
Drug-addled, running a temperature and sporting a black eye from a recent run-in with some drunks, Lilya seems beyond help. But in fact, she and others like her are the focus of outreach efforts by a nongovernmental organization based in Mykolaiv. This NGO, Blagodiynist (Charity Foundation), has been working with drug users and sex workers for more than a year to encourage safer behavior and thus slow the rapid spread of HIV.
An Explosive Epidemic
Mykolaiv's first official case of HIV was registered in 1994. A year later, more than 700 infections had been reported. By April 1999, that number had jumped to 1,683 HIV-positive people -- 77 of them ill with AIDS.
Thousands more HIV infections go unrecorded. HIV -- spread through shared needles and the widespread practice of preparing poppy straw by boiling it, sometimes with blood added as a cleaning agent, in a common pot -- is thought to have infected an estimated 80 percent of the town's injecting drug users. Nationwide, 70 percent of the more than 40,000 HIV cases in Ukraine are attributed to injecting drug use -- a fairly typical proportion in the former Soviet republics of eastern Europe.
HIV has already started to spread outside the drug-taking community in Ukraine. According to Dr. Irina Petrovskaya, a physician from Mykolaiv's AIDS center, 99 percent of Mykolaiv's HIV and AIDS cases in 1998 were in drug users who had become infected through shared needles. That proportion has now dropped to 80 percent, with the rest infected through sexual contact or mother-to-child transmission.
Although Ukraine has the fastest-growing rates of HIV and AIDS in Europe, the country has no national AIDS program. The government even dissolved the National Committee for AIDS Prevention at the beginning of 1999. The response to the epidemic has been left to dedicated individuals like the group of Mykolaiv physicians and psychologists who founded Blagodiynist.
Comprehensive HIV Prevention and Care Programs for Injection Drug Users
Drug taking has lost much of the trendiness that distinguished it in Mykolaiv in the 1980s, when drug users had their own style of dress called strogaya moda -- strict fashion. These days drug users are poorer and less tolerated, yet their numbers are higher than ever, and they are starting younger. Officially this town of 500,000 has 4,000 drug users. Unofficially, add a zero to get the real number. Natives, with a kind of dreary pride, call it the city of drug addicts.
"Mykolaiv has always had a special atmosphere," explained Alina, a drug user who turned to sex work to support her habit and her little daughter. "If you go away from Mykolaiv to another town, you can have a normal way of life. But as soon as you come back to Mykolaiv, anyone who has tried drugs will immediately take up their old life again."
Blagodiynist, in association with the municipal and regional social services for youth, organizes drugs prevention events for the town's young people, such as discos and concerts. Groups of volunteer student psychologists and teachers give regular lectures in schools. But the NGO members recognize that drug prevention programs are much slower and less successful than the spread of the AIDS virus. In a desperate race against a relentless epidemic, they have turned to an approach commonly known as comprehensive HIV prevention and care programs for injection drug user. This approach focuses on reducing HIV transmission by encouraging drug users to use safer injecting techniques and condoms while working gradually to reduce or eliminate injecting drug use.
"Whatever we do, there will always be new drug users," said Dr. Petrovskaya. "What's important is that the older drug users don't pass on HIV to the younger ones. New drug users always turn to the older ones, who will pass on their experience, where to buy, how to inject. We'd like the older ones to teach correct usage."
Blagodiynist offers a number of services to drug users, sex workers and their partners. The NGO's members have built good relationships with the city health and social services and can refer people to a surgeon, a sexually transmitted disease (STD) clinic, or the infectious diseases hospital for free health care. Many of its outreach workers, both volunteer and paid, are psychologists who offer free counseling. And in 1999, Blagodiynist began working with Family Health International's Implementing AIDS Prevention and Care (IMPACT) Project, with funding from the U.S. Agency for International Development, to refine its communication strategies and improve its outreach and support services.
The purpose of this collaboration, explained Dr. Joan MacNeil of FHI, is to help the NGO's members learn more about theories of how behavior change occurs and to work with them to translate those theories into effective interventions.
"While enhanced knowledge and awareness of risk are important precursors of behavior change, knowledge in and of itself has never proven to be the chief motivator for change," she said. "Exposure to communication and outreach activities based on theory has been shown to help personalize HIV risk and to develop individuals' confidence in their own ability to change behavior."
A second Blagodiynist project, supported by the New York-based Lindesmith Center and funded by the Open Society Institute, has one stationary point at the infectious diseases hospital and seven mobile units where people can exchange used needles for clean ones and obtain information, advice and condoms. The names of participants are not recorded, but each person who uses these services is given a card with a number so NGO staff can keep track of who comes and how often. Since the project began in 1998, 2,000 cards have been distributed. Up to 75 percent of clients use the exchange regularly.
Understanding Risk Behavior
The needle-exchange project has played an important role in gaining access to the target group of drug users, winning their confidence and persuading them to read educational materials prepared by the NGO. Now, says Blagodiynist director Tatyana Vanenkova, drug users come to exchange points especially to collect something to read.
"The main problem is that they have such poor memories," said Vanenkova. "Each time we give out information in a different form so they'll read it and remember."
Initially the NGO distributed prevention information on printed sheets of paper, but people simply used the paper to wrap their clean needles, said Vanenkova. Drawing on the experience of comprehensive HIV prevention and care programs for injection drug users in Ukraine and abroad, Blagodiynist members have started developing both the format and the content of their materials. The NGO now distributes booklets illustrated with photos and pictures instead of plain text and has tried to make the text more compelling to the target groups.
Dr. Nancy Corby, an FHI/IMPACT consultant who has been working with Blagodiynist and the NGO Faith, Hope and Love in Odessa, offered valuable advice on how to use the experience of drug users and sex workers to positively influence their peers.
"People change their behavior gradually over time," said Dr. Corby, who is associate director of the Center for Behavioral Research and Services at California State University. "We need to focus on what they believe about the behavior we are trying to get them to adopt."
Dr. Corby recommended that Blagodiynist try using role-model stories, an approach that has proved effective with drug users, sex workers and their partners in Long Beach, California, and other U.S. cities. True stories about people confronting the risk and reality of HIV, told in their own words, can help bring home the threat the virus poses to others in similar circumstances.
Such stories also offer practical, relevant examples of how to adopt and maintain safer behavior. "Role-model stories show people strengthening positive or weakening negative beliefs," Dr. Corby explained.
Alyona, a 22-year-old sex worker and drug user, agreed that real-life experience was far more valuable than mere preaching. "I knew about the risk of AIDS, but I didn't think of it happening to me," she said. "It's impossible not to know about it, but you don't need someone to tell you. You need to realize for yourself."
Alyona was one of the subjects of in-depth interviews NGO staff conducted after participating in an IMPACT-led workshop on qualitative research techniques for a dozen Ukrainian NGOs. The purpose of Blagodiynist's research was to gain a better understanding of the HIV risk behavior of its target audiences and to explore what approaches might work best with them.
As part of the same research process, Dr. Petrovskaya gathered together eight women ages 18 to 35 -- all HIV-positive drug users -- into a focus group to discuss HIV prevention and to generate real-life role-model stories.
"We talked about all the methods [of HIV transmission], and of course they knew most of them, and they'd say yes, we use condoms. But it turned out they didn't always use them, maybe with a particular lover or a sponsor," said Dr. Petrovskaya. "When we got into the nuances of HIV transmission, they began to think more deeply, and they got more active. They started to speak more to who they met, that it's better to use condoms, better to disinfect needles. It turned out that they very often used the same needles as an HIV-positive person."
Role Models
The stories collected by Blagodiynist are convincingly real. They clearly show a target group where rules for safe sexual behavior and drug-use are half-known, and often not followed.
One sex worker, despite knowing the importance of condom use, nevertheless agreed to have sex without one with a client who paid her only an extra 5 Hryvnas for the privilege -- about $1. She details her terror and anger at herself as she awaits the results of an AIDS test.
Another drug user explains how he and his friend thought they used drugs safely by collecting poppy straw from a pot with sterilized needles and then sterilizing the dose itself by boiling it in a spoon. Nevertheless, the man's friend was diagnosed with HIV. After boiling the dose to disinfect it, the two men had injected it with the same needle they had originally used to collect the drug from the common pot.
"So it turned out all our disinfecting was for nothing, because all the same [my friend] Zhenka got HIV," said the man, whose own test came back negative. "Now I do everything right and definitely disinfect needles. And I say to all my friends, that if they don't prepare the dose themselves but buy it, they have to do everything carefully because you just don't know who has put their needles into the pot."
Blagodiynist uses the role-model examples to encourage and support continued behavior change. This support, along with individuals' own experience with safer behaviors, is designed to generate the self-confidence people need to refuse sex without a condom or to spend that little bit less on drugs so they can buy clean needles.
"Now I always think, 'That I'm a street walker means nothing, all the same I should take care of myself,'" said the woman who agreed to have sex without a condom. Her assertion of self-worth is a natural result of adopting safer behavior, Dr. Corby believes.
"Self-esteem is something that comes as a result of behavior change: 'I have power over myself,'" she said.
Building Trust
Dima, 26, is an example of that metamorphosis. He is a member of Dr. Petrovskaya's support group for HIV-positive people who have, at least temporarily, given up drugs. He also works for Blagodiynist as a volunteer.
When Dr. Petrovskaya invited him to volunteer, Dima was worried that working with drug users would be an inducement to return to drug taking, which he gave up in 1996 after finding out he was HIV-positive.
"At first I felt like it was provocation -- I was scared to get into that circle of people," he said. "But now it's all right. It doesn't provoke me now."
Blagodiynist has been hugely successful in building up trust between project members and target groups. Sex workers and drug users greet the volunteers with familiarity and even affection.
We're not afraid of [the organization], on the contrary, it's pleasant to talk with them," said Diana, a 24-year-old drug user and sex worker on the highway just outside Mykolaiv. "They are the only ones who understand drug addicts and prostitutes. They don't regard us as the dregs of society."
Although the drug user and sex worker groups largely overlap, reaching the sex workers posed more of a challenge because police harassment made them wary of strangers. When the NGO was making initial contact, women complained that one of their number who had been seen talking to an outreach worker was later arrested.
The NGO made real inroads only after it started working with Olga Vidonova, a former kindergarten teacher who underwent a traumatic experience in Greece when the dancing job she had been promised turned out to be forced sex work. She has been able to turn her experience to some good with Mykolaiv's sex workers.
"They know that I'm like them and they talk freely," she said simply. "I ask them if they've got work, are there clients. We talk about ourselves, then I tell them, you know, there is this project. We get to know each other and they are not so scared, not so wary."
Vidonova's work takes her regularly onto the dark streets at night. She doesn't just offer advice and dole out condoms. When she sees a sex worker surrounded by three men, she immediately goes to her rescue. The sex worker loses her (empty) purse to the three would-be Mafia men who take protection money without giving protection. But if Vidonova had not interfered, she says, the girl would have been beaten up.
It's an attitude like this that has won the women over. But while most of them will now willingly talk and read the information, most are far from forming the safe habits that Blagodiynist wants to instill. Even if they know they should always use condoms, turning down clients who do not want to use one is something many do not yet have the confidence to do.
"It often happens that clients don't want to use condoms," said Diana. "I practically won't do the sexual act without a condom -- but sometimes they say no, without. Girls agree, of course. They're afraid. What can they do if the clients don't want to?"
Reaching the clients to overcome a common dislike of condoms is something that can only be done via the sex workers, Vanenkova said. Prostitution is tolerated but illegal, and the moral stigma it carries is strong, so identifying clients as a group is a delicate job. And although the NGO's education and prevention work has attracted the attention of some clients, members said that 99 percent of the population, outside the risk groups of sex workers and drug users, simply walk away when they hear the word AIDS.
"Practically, it starts with the girls," said Vanenkova. "Now when we talk to the girls, they say in principle the clients are already more informed. They bring condoms themselves and use them. Of course there are cases where the client doesn't want to use one and agrees to pay not to use one."
Despite these obstacles, Vanenkova adds, the sex workers are motivated to avoid HIV. "The girls are themselves afraid. If one of the guys knows he was infected by a girl, it will be really hard for her. So the girls have a strong interest in protecting themselves."
Challenges Ahead
However successful is Blagodiynist's outreach to its target groups, the NGO still faces the frustration of how to reach wider groups: sex workers' clients and their other sex partners, drug users' partners, and beyond that to the police, medical staff and government officials, all of whom are instrumental in checking the spread of HIV. While members of the target groups have already begun to take to heart the risk of HIV infection, the rest of the population still think the epidemic is not their problem.
Things have improved since Dima tested HIV-positive in 1996, when despite the supposed anonymity of AIDS testing, medical staff leaked the news to his relatives and his workplace. He lost his job and was told to go work as a security guard so he would not have contact with others. At home, his parents gave him a separate place to sit and his own cup and plate.
Now, thanks to the work of Blagodiynist, the AIDS center and the social services for youth, Dima's parents and others are more informed. But as the epidemic spreads, facilities for monitoring and checking the disease are failing drastically. Although by law AIDS testing is free and anonymous, in practice there is such a shortage of test kits that Mykolaiv's AIDS center is forced to charge. With the concomitant drop in the number of people being tested, 1999 figures in Mykolaiv probably do not accurately reflect the real number of new HIV cases.
Even when people know that they are HIV-positive, expensive antiretroviral therapy is almost unheard of in Ukraine. In Mykolaiv, most drug users living with HIV do not live long. Since 1994, there have been about 40 deaths of diagnosed AIDS. But according to Dr. Petrovskaya, many more deaths from tuberculosis, hepatitis and STDs were probably hastened by AIDS.
"Active drug users started to die more and more from the second half of 1997," she said. "Now we're expecting a flood of AIDS deaths."
That makes Petrovskaya's job all the harder, considering her oft-repeated litany that "you have to love these people." She clearly does. Every day, she and her fellow members of Blagodiynist show people living at society's margins that someone cares about them.
"Lots of girls ask what [the project] is, where it's from, who's paying, who needs it," said Vidonova. "They can't understand. They say, 'Who needs us? We're drug addicts, we're finished people.' And they come to us again, just to talk on a normal, human level."
Lily Hyde is a freelance journalist based in Kiev, Ukraine.
