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Background

The exponential rate with which HIV/AIDS is spreading throughout Russia has already earned the country the distinction among international AIDS experts of being home to one of the fastest-growing epidemics in the world. The official number of registered HIV/AIDS cases in Russia was 311,414 as of March 2005,⁷ but experts reported the actual figures to be much higher. The Federal AIDS Center in Moscow noted that between 800,000 and 1.2 million is a more realistic estimate.⁸ And a United Nations report on HIV/AIDS released in December 2003 set the figure even higher at 1.5 million.⁹ The U.N. estimates that from 1995 to 2001, the rate of new infection in Russia doubled every six to twelve months.¹⁰

Just as the number of newly registered HIV/AIDS cases rises, so too does the number of HIV-positive women having children. HIV can pass from mother to child in utero, in the birth canal during childbirth, and through breast milk. A short course of antiretroviral (ARV) drugs administered to the woman and her newborn can greatly reduce the risk of HIV transmission through these means.¹¹ In 1997, the Russian health ministry began implementing its policy of preventing transmission of the virus from mother to child. In 1997, sixty such births were registered by the government; by the end of 2004, the government estimated that an accumulated total of 9,371 HIV-positive women had given birth in Russia.¹² As with all official AIDS statistics in Russia, there is good reason to suppose these numbers are gross underestimates. While some regions are vigilant about testing all women for HIV during pregnancy, in many areas testing is haphazard or voluntary, and thus it is difficult to know the real numbers. If the actual number of cases of HIV/AIDS in Russia is four times that of the official number, it stands to reason that the number of HIV-positive women giving birth is considerably higher than the reported one.

While the Russian Federal AIDS Center tallies the registered cases of HIV-positive women giving birth, the number of children who are born HIV-positive and remain so is still unclear. This is largely due to testing practices used in Russia that allow doctors to determine a child’s HIV status definitively only at eighteen months.¹³ In some areas – Moscow, for example—the age at which the diagnosis is confirmed is even later, at three years of age.¹⁴ This delay in establishing a diagnosis is due to Russia’s reliance on an antibody test for the presence of HIV—one that is more available as well as affordable. However, in some of the cities most affected by HIV—among them St. Petersburg—health service providers are trying to use a more costly and more sensitive HIV test to determine a child’s status as early as six or seven months. Since in 2004 the majority of HIV-positive mothers had given birth in the past two years, the official diagnosis for the younger children is still pending.

HIV/AIDS became a problem of epidemic proportions in Russia in the mid-1990s when it began to spread among injection drug users. Injection drug use, dominated by heroin use, grew very rapidly in Russia and many former Soviet states after the collapse of the Soviet Union when unemployment and poverty also skyrocketed. While 90 percent of people officially registered as living with HIV/AIDS as of 2002 were infected by injection drug use,¹⁵ the path of the virus is rapidly moving beyond drug users to the general population. According to a 2004 report by the Russian health ministry, sexual transmission accounted for 19.4 percent of all HIV cases in Russia in 2003, compared to 13.4 percent in 2002 and 4.7 percent in 2001.¹⁶

“Heterosexual contact accounted for around 15 percent of our new cases last year [2003],” said Dr. Vladimir Musatov, deputy chief physician of St. Petersburg’s Botkin Infectious Disease Hospital, adding that the figure was up from 10 percent in 2002. “We have no understanding of a high-risk group here anymore, because the path of infection has spread from the high-risk groups to the general population.”¹⁷ This trend necessarily means a large increase in mother-to-child transmission (MTCT) unless measures are taken to prevent it. If, as experts estimate, the actual number of HIV/AIDS cases in Russia is closer to 1 million, doctors like Musatov are anticipating an explosion in the numbers of HIV-positive women who will give birth in the coming years.

Stigma of Revealing Diagnosis

The ignorance that prevails throughout Russia about the virus—even among the medical community—contributes to one of the biggest problems affecting people living with HIV/AIDS: the stigma they face in society. They are so frightened of revealing the diagnosis of HIV seropositivity that they routinely keep it secret from their employers, colleagues, friends and even their families. They have cause to believe that being openly HIV-positive will lead to their dismissal from work, their ostracism at the neighborhood clinic, and even being kicked out of their homes by family members. Women who find out they are HIV-positive when they are pregnant must contend with this fear and loneliness on top of the other pressures they face.

Natasha R., an HIV-positive woman in her thirties who attended a self-help group for positive people in St. Petersburg, told Human Rights Watch that people living with HIV/AIDS are so frightened of the consequences of other people knowing their HIV status that they do not even tell their families. “Hiding your status from parents or spouses is not the exception, it is the rule,”¹⁸ Natasha R. said, citing a woman in her support group who serves as a frightening example for them all. When her husband found out she was HIV-positive he kicked her out of the house and filed a case in court to have her parental rights relinquished. He won, and she was barred from seeing the son she had raised for the first eight years of his life. After her husband kicked her out, her mother also refused to let her in to the apartment to which she has a legal right of residency. With nowhere to go, she lived the life of a homeless person for several months, sleeping in train stations and in the streets until she managed to find an inexpensive room to rent on the outskirts of town.¹⁹

People living with HIV/AIDS are equally frightened of revealing their status at work. At a meeting of an HIV/AIDS self-support group, some members were discussing the dilemma a fellow member was facing. Having applied for a job, she had all but been offered a position when her potential employer asked her to go for a complete medical check-up at a designated clinic. The reaction in the room was swift and unanimous:  “She must find someone who looks like her (and who is not HIV-positive) and give her her passport to go and take the medical exam,” said one group member. “That is the only option left to us,” echoed Natasha R. “If she is found to be positive, no one will hire her.”²⁰

Indeed, many are so frightened of the potential consequences of having their HIV status revealed that they quit their jobs rather than risk disclosure. “We learned from one unhappy experience a few years ago. The employer of one of our members, a young man who worked in telecommunications, found out that he was HIV-positive. The company immediately fired him and brought a [civil] suit against him for spreading the disease,” said Natasha R., adding that the man did not live long enough to see the end of the court case. “After that we all slowly left our jobs,” she said. “We lead a double life. Only among our own can we relax a little.”²¹

One place they cannot avoid revealing their status is the local clinic. Once doctors or nurses see their medical records, they immediately learn that they are HIV-positive. People living with HIV/AIDS in St. Petersburg told Human Rights Watch they never know if they are going to meet an understanding doctor or one who addresses them rudely or refuses to treat them at all. A 2003 study of people living with HIV/AIDS in St. Petersburg, for example, revealed that 30 percent of the 470 survey participants had been refused health care because of their HIV status.²²

But Natasha R. said that she and her friends have found one way to avoid the contemptuous glances and rude treatment at the clinic – they have stopped going there altogether. “We go to our own clinic,” she said, referring to the St. Petersburg AIDS center. In theory, the local clinics are supposed to treat all HIV-positive patients within the district for comprehensive medical care—gynecological, dental, surgery, etc. But since many of these local doctors refuse to treat HIV-positive patients—and many HIV-positive patients refuse to continue to go there—the AIDS center has to pick up the slack. The lines are often very long, says Natasha R., but it is worth it to be able to avoid her local clinic.²³

Irina Onagurbanova, head of the Innovations family center in St. Petersburg, a non-governmental organization funded by international donors, said that many of the HIV-positive people who rely on their support services complain of being turned away by doctors. “We have one woman who needed an operation on her throat, but the doctor refused. We tried and tried to help her find a doctor who would operate, but no one would do it,” said Onagurbanova. “Now we have a woman who needs a heart operation, but again the doctor refused.”²⁴

Since it is illegal to refuse treatment based on the patient’s HIV status, many doctors find convenient excuses to reject a patient. “They might say the operation is optional, or that it is better to wait,” said Tatyana Intigrinova of Transatlantic Partners Against AIDS (TPAA).²⁵

Prospect of Parenthood

If people living with HIV/AIDS face such fears in their everyday lives, their fears only increase with the prospect of parenthood. The discrimination they and their child face may start just days after the birth, when the pediatrician from the local clinic routinely makes house calls to all newborns. Many HIV-positive families have reported that these doctors insult them, accuse them of bad parenting, and openly question their long-term ability to care for a child. Some doctors counsel parents not to kiss their babies, and to keep a different set of dishware so as to protect them from infection—advice that reflects their ignorance of how HIV is transmitted. Some doctors refuse altogether to visit a household with HIV-positive people.

These are the barriers HIV-positive children with parents face, but those without parents face even greater hurdles. Some 10 to 20 percent of all children born to HIV-positive mothers are abandoned to the care of the state. These are, more often than not, children of HIV-positive women who are dependent on drugs but have no access to drug treatment programs. The mother not only has no means of seeking help for her addiction, but she is often living on the brink of poverty and barely able to support herself, let alone a child. Furthermore, there is no social support network to enable these mothers to keep their children. In some cases, an HIV-positive mother takes her child home after birth, only to abandon the child later when she finds she is unable to care for him. A significant percentage of these abandoned children—for lack of anywhere else to go—may linger for years in stark hospital wards.

With minimal public funding to counteract ignorance and unfounded fears about HIV/AIDS, it is no wonder that the stigma associated with this disease has led to the disenfranchisement of HIV-positive people—a group whose ranks are growing daily. “Our society is not ready; it doesn’t understand what it’s dealing with,” said Vadim Pokrovsky, head of the Federal AIDS Center. “We spend $1 million per year on awareness programs. We should be spending $70 million.”²⁶

On paper, Russian law protects people living with HIV/AIDS from the discrimination they face from a society that fears them. According to the 1995 federal AIDS law, it is illegal to restrict the rights and legal interests of a person living with HIV/AIDS, including in employment, education, and health care.²⁷ But the law, for all its positive points, remains unenforced, and protecting the rights of those living with HIV/AIDS remains a low priority for government officials.