index  |  next>>

Summary

“Of course I am afraid for my children. I’m very afraid for their future, and how people will relate to them. These children are not dangerous to anyone. They can bring a lot of good to society. The most important question is that of adaptation. Society must adapt to our children and understand that they are valuable citizens. If they happened to experience tragedy, especially as children, then we should be that much more tolerant.”
-Olga Kim, chief doctor of Baby House # 10 (for children of HIV-positive mothers), St. Petersburg, March 18, 2004.

Russia is home to one of the fastest-growing and potentially massive AIDS epidemics in the world, but the government has done little to address the problem. As a result, the Russian public today, though highly educated, is almost as ignorant of HIV and how it is spread as it was ten years ago, when AIDS was hardly known in Russia. A great many medical personnel still remain grossly uninformed and even hostile toward HIV-positive patients. The general public’s knowledge of the virus is, accordingly, extremely limited. And the fact that injection drug users account for 80 percent of persons registered as living with HIV/AIDS does not encourage society to adopt greater tolerance or understanding. There is widespread belief that high-risk individuals—drug users and commercial sex workers—got what they deserved. Recent surveys in Moscow—where  there is a higher prevalence of HIV/AIDS and greater access to information than in many parts of the country—revealed that more than half of those responding believe that one can be infected by drinking from the same glass as an HIV-positive person. Even more alarming, nearly half of the respondents believe that HIV-positive people should be isolated from society.¹

It is against this backdrop that a growing number of HIV-positive pregnant women and new mothers must make a very difficult choice: whether or not to keep their children. Shunned by society, these women are vulnerable to discrimination on many fronts: access to health care, employment and education. Many are dependent on drugs and have no access to rehabilitation programs. Still others are living on the brink of poverty. With little or no means to provide for themselves, many find overwhelming the burden of caring for a child to whom the disease may have been transmitted and who would face the same stigma; these mothers may choose instead to abandon their babies.

While Russia’s HIV/AIDS crisis has received widespread international attention, this particular aspect of the crisis—abandoned children of HIV-positive mothers—still remains hidden behind closed doors. According to statistics from the government’s Federal AIDS Center in Moscow, 9,529 HIV-positive women had given birth by January 31, 2005, nearly 80 percent of whom had done so since 2002. Many believe these figures are gross underestimates, and as the virus spreads from the high-risk groups of injection drug users and commercial sex workers to the general population, these numbers are only expected to rise in the coming years.

While most of these children go home with their mothers or other relatives, up to 20 percent may be abandoned by their mothers at birth. This report focuses on the care HIV-positive women receive during pregnancy and the fate of their children—those who go home with them as well as those who are abandoned. These are the children who are being placed in specialized orphanages for HIV-positive children or, even worse, warehoused in hospital wards where their only access to the outside world is a nurse in rubber gloves who feeds them. The isolation of these children has nothing to do with medical science and everything to do with discrimination and stigma—themselves the result of misinformation that the government has done little to reverse. Widespread fear of people with HIV/AIDS has contributed to the abandonment as well as the indefinite segregation of the virus’ most hapless sufferers.

While Russian AIDS experts recognize that there is no medical need to isolate these children, some argue that given society’s harsh view of HIV/AIDS it is better to maintain separate orphanages for their own protection. Federal Ministry of Health and Social Development² officials recognize that this practice is illegal, and that it reinforces AIDS-related stigma. By law, regular baby houses—orphanages for children three and under—have no right to refuse an HIV-positive child. But the reality is that employees there might be so frightened of daily contact with a baby who might be HIV-positive that they will think of any excuse not to take him, such as closing for repairs or not having enough space.

When a region has no specialized baby house and the regular baby house will not accept an infant who might be HIV-positive, then the child is likely to be left indefinitely in a hospital ward with no stimulation and no opportunity for development. Dr. Yevgeny Voronin, chief doctor of the Republican Hospital for Infectious Diseases, who has been treating HIV-positive children for fifteen years, related one particularly horrific case to Human Rights Watch:

We had one case when we got a child who spent three years in isolation in a small children’s hospital where everyone was afraid of HIV and everyone was afraid to take that child in his arms. At three the child’s development was that of a four-month-old at best. She couldn’t speak. She didn’t know how to swallow hard food. She was very aggressive and afraid of everyone. She was completely different from our children. I hired an early education specialist and psychologist to work with her alone. We worked with her for a year, but we couldn’t change anything. We were then forced—I know it sounds cruel—but we were forced to send her back to the hospital from which she came.³

Compared to such tragic cases, the fate of children born to HIV-positive parents who live at home is a happier one. But their integration into society is far from trouble-free. By the time they reach eighteen months doctors confirm whether they are HIV-positive or negative. If they inherit the virus from their parents, the same fear that keeps many abandoned children stowed away in hospitals may restrict them from entering kindergarten and elementary school. Indeed, some day care centers or educational facilities may even be reluctant to accept a child even if it is the parents—not the child—who are HIV-positive. Such discrimination is not only contrary to Russian law, but to the Convention on the Rights of the Child, which stresses that states take all appropriate measures to ensure that children are protected from discrimination. Despite international and national standards that are supposed to protect the children of HIV-positive women, the Russian government is failing lamentably in its obligation to implement these standards.

In the meantime, their parents may have to deal with belligerent doctors who refuse to treat them. Refusing medical assistance and entry into an educational institution for someone who is HIV-positive may be banned by Russian law, but many people living with HIV/AIDS are so frightened of revealing their status that they would rather suffer the consequences of discrimination than stand up for their rights.

One HIV-positive woman in St. Petersburg who hides her status from friends and family summed up this awful choice. “We lead a double life. Only among our own can we relax a little.”⁴