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USSR UNDISCLOSUREText by Giulia Minoia

The HIV/AIDS epidemic in Ukraine is a child of the sense of instability and insecurity that flood Eastern Europe after the death and funeral of Leonid Brezhnev. "1991 has been a year of crisis for many young people in the country" says Sergey Kostin, a former injecting drug user, founder and director of The Way Home, a charitable foundation where social workers - most of them have a background of drug abuses and prison - provide street kids and other vulnerable groups with daily care, help, and counseling. When Soviet Union collapsed, the shift to democracy has created a panic attack, and opium was the easiest way to calm it.

Due to lack of funding and investments in the health system, “only 50% of the patients who should receive antiretroviral drugs have access to free treatment programs” admits sadly Jeroslava Iopotina, a doctor specialized in viral infections and working at the Lavra Clinic in Kiev, probably the best places you want to end up in Ukraine, if diagnosed with HIV. Lavra Clinic is a cozy, comfortable, clean environment, where patients and nurses crack jokes over lunchtime. It is a place where you can meet HIV+ people from any region of Ukraine. They come here every three months to have their tests done and maybe stay a little longer for the community feeling, for the pleasant and familiar sense of recognition. Unfortunately, the clinic is leaning against the fence of the Lavra Monastery, one of the oldest Orthodox monuments in the city and in spite of numbers, showing that more than 1600 HIV+ patients come here yearly to receive their ARV therapy, a crisis is breaking out again between the religious institution and the clinic. The head of the monastery, in fact, is trying to relocate the clinic because “he doesn’t appreciate having drug users and prostitutes as neighbors” explains Anton Sack, who’s been a social worker at the clinic for the last ten years.

Fortunately faith is not always a mean of discrimination in Ukraine. In Bancheny, on the Carpathian Mountains near Chernivtsi, the Svyato Voznesensky Monastery Orphanage hosts 83 HIV+ kids, among whom six are said to have been cured. The positive surrounding helps, and probably “drugs do work but a good pray does it’s job too”, says Matushka Elisabeth, a bright, smiling nun, coordinating the HIV+ section of the orphanage. Kids between 2 and 10 are given treatments twice a day. They exercise, play, eat and live in an environment where “they should feel like at home and that’s why any room is different from another” explains the nun.

In spite of these very few cases of excellence, in the country the vulnerability of those who are living with HIV is still brightly visible. There are cases of discrimination among doctors who link HIV+ people to an imaginary of drug abuses and feed narratives that keep patients away from medical cares. Stories that are then spread through a word of mouth, influencing women like Sasha, 25 years old, who’s kept her status secret until a skin infection showed up with visible and painful symptoms, forcing her to ask for help, to take tests and apply for an ARV therapy program at the Kiev AIDS Center. There are cases of women who fear stigma and consequently prevent themselves from looking for an employment. “I will not tell people I am HIV+ until I finish university and get a very good job” says Iana, a 14 years old girl who has a crystal clear vision on the social perception of HIV in her country.

Hope, Faith, Love is a non-for-profit organization based in Odessa that gives women a home where they can live along with their kids. They are given free ARV drugs and they can stay as long as they need a safe place to be, before going back to their daily struggle. “Getting treatments would put me down,” says Marina, 25, a former drug user who lives at the Center with her five months child. Sometimes the routine of treatments, doctors and tests becomes a representation of failure, a representation of the marginal life that HIV carries along. Even though data are showing a positive trend among IDUs to prevent themselves from HIV infection, risks related to sexual transmission are still underestimated. “The percentage of injecting drugs related infections has dropped in the last five years, but there is still no prevention in sexual transmission, which has turned to be the major cause of new infections: around some 60%" reports Victoria Riplova, a doctor at the HIV City Center in Odessa. Injecting drugs, though, is still the second cause of HIV transmission in Ukraine. It counts for some 36%, showing the highest rate in European countries and a severe indicator within the whole world.

The picture shows that whether funds, education programs and care are far away from being part of the Government agenda on HIV, adaptation options at grass root level nurture small and tailored solutions. Networks of NGOs and foundations have made a difference but there’s still a feeling, overall Ukraine, that living with HIV is a burden that any single man and woman has to carry by his/her own. The broad spectrum of the country’s support to HIV patients can be synthesized by Sasha’s words, a methadone user at Kiev Aids Center who left the country before the USSR collapsed and got back in 1994, finding a nation with no guidance and no clues to get out of the crisis, a country that “was feeling very, very uncomfortable”.

STORIES

THE WAY HOME ODESSA

Following the collapse of the Soviet Union in 1991, social conditions in the city of Odessa deteriorated quickly. The impact on society was devastating. The sudden change that occurred in people’s everyday life was too radical and, given the inability of the government to provide any sort of assistance, for many families was much more than what they could bear on their own shoulders. Many people eventually ended up living in the streets in poor conditions and their desperation and lack of alternatives resulted in increasingly high levels of crime, prostitution, alcoholism and drug abuse, with all the consequences they carry on.

The estimates say that in Odessa there are some 3 to 4 thousands kids living in the streets, even though real numbers might be definitely much more worrying. These kids are from Ukraine, Russia, Romania and Moldova. Normally they settle in groups in basements, abandoned buildings or sewer manholes where they live by their own rules and, on a daily basis, they inhale glue or inject home made drugs – sharing needles and often engaging in unsafe sex – as a way to escape the harsh reality they live. Most of them ran from home because of their violent parents and more than half of them, according to statistics, could be already HIV positive.

Sergey Kostin founded The Way Home, a charity whose primary purpose is that of improving the living conditions of street kids, back in 1996. After a couple of years working with homeless kids, it became clear that they, more than others, were overexposed to HIV infection so the charity started in 1998 its first HIV/AIDS prevention program. Today, thanks to the 80 full time employees and the more than 40 volunteers, the program can perform more than a thousand HIV tests and distribute some 50 thousands sterilized syringes and condoms annually.

Over the years The Way Home has created an orphanage for 25 kids and today the charity organizes daily mobile patrols – which visit areas where street kids are known to aggregate to provide them with food, clean water, first aid meds and psychological assistance – and run a daycare center where the kids can go to wash their clothes, to sleep a few hours on a bed, to take a shower or simply to hang out together, play games and surf the internet.

Establishing and maintaining trustworthy relations and offering protection, care and support over the years, The Way Home showed them successfully that there are alternatives to the street.

SVYATO VOZNESENSKY ORPHANAGE at the Holy Ascension Monastery

Svyato Voznesensky orphanage is part of the Holy Ascension Monastery in Bancheny. The monastery, was founded by Archimandrite Longin – at the time Father Mikhail Zhar, a orphan himself – along with four monks in the autumn of 1994. After a few years they started building the orphanage.

Born in 1965 in Chernivtsi, Mr. Zhar adopted his first HIV+ child in 1992, years before becoming Father Mikhail. The orphanage, which takes now exceptional care of 253 kids coming from all over Ukraine, has been accepting HIV+ kids since 2002, when the monks completed the construction of a special building for them to live along with permanent care-givers. Today there are more than 80 HIV+ kids, aged between 2 and 10 years, who live at the orphanage in exceptional living conditions. The majority of these kids lost both their parents while the others were brought in by relatives who couldn’t take care of them or were simply abandoned on the doorsteps.

The 90 monks and 65 nuns produce, in the farm they built next to the Monastery, milk and other goods for their children and for those of other orphanages in the area as well. In Svyato Voznesensky kids eat five times a day. In the morning, depending on their age, they receive a kindergarten education on the orphanage premises or go to school in the nearby village. After lunch they have to rest while in the afternoon they do different activities depending on their health conditions. The rooms where they sleep, boys and girls strictly divided, are furnished in different ways to make them feel at home.

“Praying is much more effective than medicines to cure HIV” says Matushka Elisabeth, the head of the HIV+ kids’ section. The kids, though, take the treatment – in part provided, as well as medicines, by some health centers in the region – twice a day and there are two full time nurses that change shift five times a day to grant the children a 24 hours medical assistance. The two nurses, as well as the kindergarten teachers and the psychologists who work at the orphanage come from the surrounding villages.

In the nearby villages, over the years everybody has accepted these kids with much love and sympathy. In this tiny piece of land bordering with Romania, stigma and discrimination are not a problem.

INFOGRAPHICS Ukraine - Support

The infographics are presented for informational purposes only. Every attempt has been made to ensure that the information contained herein is accurate. Figures and percentages are based on latest available data as collected by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) and published on their respective websites.

THUMBNAILS AND CAPTIONS

Following the collapse of the Soviet Union in 1991, social conditions in the city of Odessa deteriorated quickly. The day center run by The Way Home charity is a place for street kids where they can receive basic medicines, condoms, clean needles or simply spend some time together, relaxing or taking a shower. The law in Ukraine doesn’t allow this kind of day centers to have a full-time doctor so the nurses and social workers can only take care of the kids' basic needs. In Ukraine, only 6,9% of the health facilities provides HIV testing and counseling services.

Daniel is a ten years old kid living in the streets of Odessa. Inna Nikiforova, the coordinator of the street children program of The Way Home charity, is trying to convince Daniel's mother to authorize him to live at the charity’s community center. Most of the kids like Daniel are normally put in special governmental schools but many of them escape because of the harsh conditions of living and the too hard punishment they receive by educators.

A soviet monument on the road to Chernivtsi representing the grain harvest. In Ukraine, as the epidemic spreads from predominantly male people who inject drugs to their sexual partners, the proportion of women living with HIV is also growing. The number of infected pregnant women has increased two-fold in the last few years and, as a consequence, an increasing numbers of children are born with HIV. Most of these children are born into socially disadvantaged families where insufficient knowledge about HIV/AIDS contributes to fear, stigma and discrimination.

Valya, her son Sasha, and Marina are having an afternoon snack in the kitchen of the Faith, Hope and Love community center for women in Odessa. The center is a shelter for HIV+ women who’ve been rejected by their families or have experienced abuses by their partners. Valya, a 29 years old HIV+ former sex worker, is living at the center with Sasha and her newborn baby Leonid. Marina, 25, arrived when she was pregnant but left to go back to her husbands' house to have the baby before she finally came back after being abused once more.

Kids at the day center run by the All Ukranian Network of people living with HIV in Cherkasy. In Ukraine, the number of HIV+ pregnant women has increased two-fold in the last few years and, as a consequence, an increasing number of children are born with HIV. Most of these children are born into socially disadvantaged families where insufficient knowledge about HIV/AIDS contributes to fear, stigma and discrimination with the result that 10% of children born to HIV+ mothers are abandoned.

Valya (C) and a friend of hers are outside the Faith, Hope and Love community center for women in Odessa. Valya, a 29 years old HIV+ former sex worker, has lived at the center with Sasha and his little brother Leonid for the last month only. In 2011, only 58,5% of female sex workers has received an HIV test in the last 12 months and knows the result while 61,2% of them knew where to go get tested and received condoms through information and education programs.

A class of young girls at the Svyato Voznesensky orphanage near Bancheny. Today there are more than 80 HIV+ kids, aged between 2 and 10 years, who live at the orphanage in exceptional living conditions. There are two full time nurses that change shift five times a day to grant the children a 24 hours medical assistance. The two nurses, as well as the teachers and the psychologists who work at the orphanage come from the surrounding villages. The orphanage's been accepting HIV+ kids, who receive a kindergarten style education on its premises, since 2002.

Roman is a 16 years old HIV+ drug addict. Unlike his friends, he has a Ukrainian passport that would allow him to be put on the list of people in need of ARV therapy but he refuses to take the medicines. He's seen while being shaved by a social worker at a day center run by The Way Home charity in Odessa. The center is a place for where street kids can receive basic medicines, condoms and clean. The law in Ukraine doesn’t allow day centers to have full-time doctors; nurses and social workers can only take care of the kids' basic needs. Only 6,9% of the health facilities provides HIV testing and counseling services.

A group of little boys living at the Svyato Voznesensky orphanage near Bancheny. Today there are more than 80 HIV+ kids, aged between 2 and 10 years, who live at the orphanage in exceptional living conditions. There are two full time nurses that change shift five times a day to grant the children a 24 hours medical assistance. The two nurses, as well as the teachers and the psychologists who work at the orphanage come from the surrounding villages. The orphanage's been accepting HIV+ kids, who receive a kindergarten style education on its premises, since 2002.

A private speech therapy class at the Svyato Voznesensky orphanage near Bancheny. Today there are more than 80 HIV+ kids, aged between 2 and 10 years, who live at the orphanage in exceptional living conditions. There are two full time nurses that change shift five times a day to grant the children a 24 hours medical assistance. The two nurses, as well as the teachers and the psychologists who work at the orphanage come from the surrounding villages. The orphanage's been accepting HIV+ kids, who receive a kindergarten style education on its premises, since 2002.

Valera, 18, helps Sergey, 24, to get on his feet. In the back Igor, 21, is trying to cure an infected cut on his feet. Valera, Sergey and Igor have all been living in the streets of Odessa for years and they all are HIV+ None of them is taking the ARV treatment because they are not Ukrainians and can0t be put on the government list of people in need of ARV therapy. Sergey, who's been several times in jail, has been using a homemade drug that has affected his nervous system and made him unable to walk. Valera left Moldova because of the his father’s abuses while Igor, who's been living in the streets for the last 8 years, tried to quit injecting drugs after the last time he was in but never made it.

A group of teenagers on a country road in the outskirt of Zmiyvka, between Kherson and Dnipropetrovsk. In Ukraine, injecting drugs counts for some 36% of new HIV transmission, the highest rate in Europe but only 35,7% of injecting drug users has received an HIV test in the last 12 months and know the result. It is estimated that only 49% or each second person living with HIV in Ukraine was tested for HIV and is aware of his status.

A girl is drying clothes on the roof of The Way Home community center in Odessa. After working with homeless kids for some time, the charity started in 1998 its first HIV/AIDS prevention program. Today, there are some 25 children living at the center and many others are brought by their parents to spend the day there while they are at work. Estimates say that in Odessa there are some 3 to 4 thousands kids living in the streets, even though real numbers might be definitely much more worrying.

One of the condoms quality test at MedPack. Established in 2010, the factor – the only in Ukraine - produces condoms at a rate of 300 millions a year. In 2011, 50% of women and men aged 25 to 49 who had more than one partner in the past 12 months reported the use of a condom during their last sexual intercourse compared to 70% of those aged less than 25. In general, only 40% of the young men and women have a correct knowledge of the ways to prevent the sexual transmission of HIV.

Yulia, a 33 years old drug user, is waiting to be tested at the The Way Home charity mobile clinic. The mobile clinic is part of the HIV/AIDS program of the charity and thanks to volunteers like Julia it’s able to perform more than a thousand HIV tests and distribute some 50 thousands sterilized syringes and condoms annually. Yulia started using drugs when she was 16 and nowadays she injects opium three times a day. She makes her living out of her grandmother's annuity and has a partner who pays for her drugs. She is HIV+ and is now taking the ARV therapy.

Lunch time at the Svyato Voznesensky orphanage near Bancheny. Today there are more than 80 HIV+ kids, aged between 2 and 10 years, who live at the orphanage in exceptional living conditions. There are two full time nurses that change shift five times a day to grant the children a 24 hours medical assistance. The two nurses, as well as the teachers and the psychologists who work at the orphanage come from the surrounding villages. The orphanage's been accepting HIV+ kids, who receive a kindergarten style education on its premises, since 2002.

Sergey, a 24 years old HIV+ drug user, is seen while getting out from behind the bushes where he lives. Sergey, who's been several times in jail after arriving from Moldova, has been using a homemade drug that has affected his nervous system and made him unable to walk. Kids like him are easily recognizable because of the way they walk which is commonly called "the ballet". Sergey and his friends Valera and Igor are all HIV+. None of them is taking the ARV treatment because they are not Ukrainians and can0t be put on the government list of people in need of ARV therapy. Estimates say that in Odessa there are some 3 to 4 thousands kids living in the streets, even though real numbers might be definitely much more worrying.

Tania, 43, got infected with HIV after her husband had unsafe sex with another woman. She found out to be HIV+ when she got pregnant and since then she's been on ARV therapy. She goes to the Mangust community center in Kerson to attend sewing workshops and other classes. The center is a place where people living with HIV can receive support, free medicines, condoms and clean needles. In Ukraine, only 6,9% of the health facilities provides HIV testing and counseling services.

Sergey, a 24 years old HIV+ drug user is seen while “performing the ballet”. The ballet is the name used to indicate the way IDUs walk after their nervous system has been damaged by homemade drugs. Sergey and his friends Valera and Igor are all HIV+. None of them is taking the ARV treatment because they are not Ukrainians and can0t be put on the government list of people in need of ARV therapy. Estimates say that in Odessa there are some 3 to 4 thousands kids living in the streets, even though real numbers might be definitely much more worrying.

Sergey, a 27 years old HIV+ man, is seen in his room in the Intensive Care Unit of the Kiev Aids Center. In general, in Ukraine only 40% of the young men and women aged 15 to 24 years have a correct knowledge of the ways to prevent the sexual transmission of HIV while barely 9,4% of them has received an HIV test in the last 12 months and know their status. As a result, it is estimated that only 49% or each second person living with HIV in Ukraine was tested for HIV and is aware of his positive HIV status.