UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe and Central Asia

Alexandra - 17 months. Copyright UNICEF/NYHQ2004-0698/G. Pirozzi

The following are some excerpts from the UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe & Central Asia. Emphasis added to highlight the areas I find most relevant to this blog topic.

“This report brings to life the experiences of children, families and young people living with HIV.  It gives voice to their stories of despair, stigma and social exclusion, as well as to their courage and hope.

Access to antiretroviral treatment is still among the lowest in the world, and stigma and discrimination that violate the basic rights and dignity of people living with and affected by HIV, including children, are hampering further progress in prevention, care and support.

Eastern Europe and Central Asia are the only parts of the world where the HIV epidemic remains clearly on the rise. Increases of up to 700 per cent in HIV infection rates have been found in some parts of the Russian Federation since 2006. Women, who now account for some 40 per cent of new cases compared to just 24 per cent under a decade ago are increasingly affected by HIV, as are children. The total number of HIV-positive pregnancies has doubled during the past five years.

Children born to HIV-positive mothers suffer the consequences of these prejudices, experiencing a much higher likelihood than other children of being abandoned at a hospital, or being left to live in isolation at a specialized care institution. Across Eastern Europe, children born to HIV-positive mothers have a much higher risk than others of being abandoned at or soon after birth. Their removal from their mother, their family and community is an expression of both the stigma surrounding the HIV disease and of the multiple hardships that overwhelm many disadvantaged women.

Currently, the region has the highest rates of family separation in the world, with approximately 1.3 million children deprived of parental care and isolated from family and community, even though the vast majority still have biological parents. The relinquishment of children to institutional care is an established solution for families in distress – a practice that has historic roots and continues to the present day, despite strong evidence of its negative consequences for children’s well-being.

The infrastructure of institutional care remains as that of the Soviet era. Infants who are left in maternities are transferred to baby homes (Dom Ribyonka) where they stay until the age of three. If they are not adopted during these early years they are transferred to children’s homes (Dyetski Dom) for the next four years and then onwards to ‘internats’ for 7- to 18-year-olds. This movement through different institutional settings leaves many children poorly equipped to cope or find jobs once they leave and highly vulnerable to abuse and exploitation. Young people graduating from these institutions have much higher rates of alcoholism, drug use, criminal behavior, unemployment, imprisonment and suicide than their peers.

For children with HIV who live in institutions, the chances of being adopted are particularly slim as a result of widespread prejudice. Elena, from Ukraine, who adopted two HIV-positive girls (aged 6 and 7), shares her experience:

From the moment I saw them, I immediately knew that I would love them like my own children. Imagine my surprise when the adoption agency tried to convince me not to take these two girls! They said to me, ‘Why would you want such a headache, you should take some other children.’

Despite growing availability of alternative family-based solutions, residential care is not diminishing. In recent years, the proportion of children in residential care has increased.

In the Russian Federation and Ukraine, about 6 to 10 per cent of children born to HIV-positive mothers are abandoned in maternity wards, pediatric hospitals and residential institutions, with little opportunity for foster care, adoption or family reunification. While the relative proportion of children abandoned at birth by these mothers has been decreasing, the number of HIV-positive pregnancies has grown, creating a steady increase in the cumulative numbers of children abandoned to state care overall. The reasons for infant and child relinquishment by HIV-positive women are complex. An in-depth qualitative study of HIV-infected mothers, their families and health-care workers from four regions in the Russian Federation concluded that HIV was not the primary reason for infant abandonment. Rather, the key factors increasing the likelihood of abandonment were: unwanted pregnancy, poverty, lack of family support, drug and alcohol use, fear of the infant having birth defects or disabilities, and an inability to support the costs of caring. Of these, the strongest predictor was unwanted pregnancy.

Within the context of child-care reforms in many countries of the region, support to biological families to keep their children, prevention of abandonment, and the development of family-based care alternatives to institutionalization have increasingly been a focus. UNICEF has been a key partner in many such initiatives. In Ukraine, for example, almost 90 per cent of maternities have established linkages with social services to address child abandonment. A number of ‘Mother-Baby Centres’ have been opened by state social services to support new mothers in difficult circumstances. Many of the mothers are teenagers or single women who have been rejected by their families. Reports show that over 60 per cent of mothers who are in contact with the centres change their minds about abandoning their babies. Similarly, projects led by NGOs, such as the MAMA+ project of Health Rights International with the Ukrainian Foundation for Public Health, have provided support for HIV-positive and drug-using pregnant women and mothers to enable them to keep their children. A range of client-oriented services are provided, including day-care centres, family visits, referrals to health-care facilities and drug and alcohol addiction counseling. The All-Ukrainian Network of People Living with HIV/AIDS has also taken action to find family-based care options for abandoned HIV-positive children living in institutions. Finding adoptive parents has been particularly challenging as a result of many legal obstacles, widespread social misconceptions about HIV, and the high levels of stigma and ignorance associated with the disease. As expressed by one of the project coordinators from the Network: “We have looked for adoptive parents for over two years. It is extremely difficult to find such people. We believe we need to find such families and provide them with all the necessary support. The majority of HIV-positive kids have suffered through living in orphanages and need special care.”

Yana was just eight years old when she started living on the streets. Her father, an alcoholic, died young and she was separated from her mother who was sent to jail. Originally from Moldova, one of the poorest countries in Europe, Yana wandered through several towns and eventually ended up on the streets of Odessa, Ukraine. Her ‘home’ was a makeshift shed in a park. A group of 20 street children built the hideout themselves, the youngest only six years old. They begged, stole and prostituted themselves to survive. Drugs helped them cope with their lives. Through sharing needles they also shared HIV. Yana fell sick and died at the age of 13 on the streets of Odessa, addicted to drugs and infected with HIV…”

A recent study of 15- to 19-year-old street children in St Petersburg, involving 313 participants, found that almost 40 per cent of them were HIV-positive. High levels of HIV prevalence have also been found among street children in studies in Odessa and Donetsk, Ukraine. While there are no reliable estimates of how many children are without adult supervision, living and/or working on the streets, experts agree there are probably over one million in the region. The large majority end up on the street as a result of running away from physical and psychological abuse within families, or from state-run orphanages and shelters. Once on the streets, sex and drugs become part of these children’s daily reality and other street dwellers compose their social network. Almost all street children report being sexually active and the majority have multiple partners, both through sex among peers and through selling sex.

In 2008, antiretroviral therapy (ART) coverage among adults in the region was estimated to be only 22 per cent, the second lowest in the world. The main success of health systems in the region has been the high level of coverage of services to prevent mother-to-child transmission of HIV (PMTCT) and access to pediatric AIDS treatment. An estimated 94 per cent of pregnant women have access to ARV prophylaxis. For HIV-positive children, ART coverage is estimated to be 85 per cent.

Responding effectively to the HIV epidemic in Eastern Europe and Central Asia will require a paradigm shift from blame and exclusion to support and inclusion. A rights-based approach provides the basis for that shift. As stipulated in the Convention on the Rights of the Child, all rights apply to all children without exception, and States have an obligation to protect all children from discrimination and to take positive action to promote their rights. In building and sustaining the response to HIV, governments must take the lead in developing approaches that are firmly rooted in the needs and rights of children and young people. Developing a rights-based response to meet the needs of children and young people will also require additional funding. Combined international investments in HIV in the entire region do not come close to investments in a single country such as Ethiopia that has a similar number of new HIV infections annually as the Russian Federation or Ukraine, and which also falls amongst the top twelve most affected countries in the world.”

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