Unwanted kids of Russian HIV moms

by Cesar Chelala

NEW YORK — One of the most disturbing aspects of Russia’s HIV/AIDS epidemic is not only how rapidly it is spreading but also how many children from HIV-infected mothers have been abandoned and left to the care of the state. Efforts by authorities to place them in kindergartens or schools are in most cases unsuccessful.

They have become the children whom nobody wants, in an otherwise naturally caring society.

Russian law states that abandoned children should spend their first three years in “baby-houses” or orphanages that serve as kindergartens where children are taught to talk, walk and interact with other children.

However, with many of these places refusing to take children born of HIV-infected mothers, the children remain in hospitals, growing up in isolation from other children. Under these conditions, they are at high-risk of various problems that will affect their future development.

The Russian government’s reaction to the level of threat posed by HIV/AIDS has so far been inadequate, particularly in dealing with the stigma surrounding the infection and the care for orphan children. The Russian government could learn from the slow and inadequate response in the U.S. to the epidemic. Initially, people with AIDS in the U.S. were made scapegoats and stigmatized.

Although the first case of AIDS was reported in 1981, President Ronald Reagan, who had just come into office, preferred to ignore the problem and didn’t mention it until 1987. That year, he formed a commission called the Watkins Commission ,for its chairman, James D. Watkins.

To Reagan’s and many others’ surprise, the mostly conservative commission recommended antibias legislation to protect HIV-positive people, the acceleration of AIDS research and on-demand treatment for drug addicts. The commission’s recommendations would pave the way for a more appropriate response to the epidemic in later years.

It is now known that children of HIV-positive mothers can be infected during pregnancy, delivery or breast feeding. Most infections can be prevented by adequate and timely treatment. Many mothers, particularly if they have not been treated, fear that their children will be born infected. Unable to deal with the burden — either because they are too sick or poor or both — many mothers abandon their babies who are then placed in maternity or infectious-disease wards in hospitals.

To date, more than 21,000 babies have been born to HIV-positive mothers in Russia. Of these, about 1,500 have been abandoned by their mothers. More women of childbearing age are now becoming infected through sexual contact. As their number increases, so does the risk of even more babies being born infected by mother-to-child transmission (MTCT.) Many HIV-positive women prefer to hide their situation from family and coworkers and live in virtual isolation.

In recent years, Russia’s HIV/AIDS epidemic has spread at dramatic speed, giving it one of the fastest growing infection rates in the world. Several HIV/AIDS experts estimate that more than 1.5 million Russians are HIV-infected. According to World Bank estimates, that number could reach between 5.4 million and 14.5 million in 2020.

AIDS is a social as well as a public health problem. Experience in other countries has shown that major improvements in controlling the epidemic can be achieved through strong government leadership, partnerships with business, labor and religious leaders, and lessons from the efforts and experiences of people living with HIV/AIDS.

Prejudice against the HIV-infected persists in Russian society. A massive education campaign throughout the country should aim at the most vulnerable and disadvantaged groups. The campaign should include sex and HIV-AIDS education in the schools, lessons on safe sex and harm-reduction strategies, and mass education to reduce the stigma and discrimination associated with HIV/AIDS.

Development of a system should be aimed at preventing as many MTCT cases as possible, and to disseminate learned lessons and best practices throughout the country. Strategies to prevent MTCT should be part of maternal and child health services. At the same time, more pediatricians should be adequately trained in antiretroviral therapy and the care of HIV-positive children.

To prevent painful discrimination, the government should prioritize the fight against HIV/AIDS as public policy and prosecute violators of the federal AIDS law. HIV-positive mothers still face punishing discrimination; the tragedy for them and their children is in urgent need of redress.

Cesar Chelala, M.D., Ph.D., is the author of “AIDS: A Modern Epidemic,” a publication of the Pan American Health Organization, the regional office of the World Health Organization.