San Francisco Chronicle - Monday, July 29, 2002
Anna Badkhen, Chronicle Staff Writer

Some stay a few months, providing rudimentary care to Vanya and 27 other children crammed into four dilapidated rooms with barred windows behind a tall brick fence at the end of a dirt road. Some last a few weeks.

Most nurses, however, leave on the same day. They say they are afraid their friends and families will turn away from them if they find out the children in their care have HIV, says Lyudmila Zhuravlyova, one of the children's teachers.

Many, she says, are afraid of becoming infected themselves.

Sometime soon, Vanya, whose health is rapidly deteriorating, will develop AIDS and die, says Yelena Vedmed, a social worker at the Republican Hospital for Communicable Diseases, the only Russian inpatient facility for children with HIV. Most likely, so will the 27 other children in her ward, who were infected at birth and abandoned by their HIV-positive mothers to the perfunctory care of underpaid, reluctant nurses.

Until then, Vanya, the others at the Republican Hospital and the 2,400 children scattered across Russia officially registered as HIV-positive will have to fight for their lives against two merciless foes: the incurable virus inside them and the hostile ignorance outside. It is this stubborn ignorance, AIDS experts fear, that will contribute to a pandemic they predict for Russia over the next 20 years.

Russia has the fastest growing epidemic of HIV infection in the world. According to the government, there are more than 200,000 HIV cases now. At the end of 2001, according to health ministry officials, 40,000 women of childbearing age were among them.

Nongovernment experts believe the overall figures may be as much as five times higher. If the infection continues to grow at its current rate, say Russia's top AIDS researchers, more than 5 million Russians could have HIV by 2007. By 2015, according to the Center for Strategic and International Studies in Washington, as many as 10 million may be dead from AIDS.

COUNTRY IN DENIAL

Ranged against this potentially looming disaster is a government that spends just $45 per HIV patient, poorly trained and underfinanced health officials, and a country in denial -- a trait that even extends to those whose job it is to take care of the epidemic's most vulnerable victims.

"The problem is that people who are supposed to be helping those who are ill are themselves terrified by the disease and therefore are very unlikely to provide any help," said Nikolai Nedzelski, director of the Info Plus information center for people with HIV and AIDS in Moscow.

Russian orphanages grudgingly admit healthy children who were born to HIV- positive mothers, Vedmed said, but they refuse to take in children who have contracted the virus themselves. Vedmed's young patients are developmentally at least 18 months behind other children their age, due, she said, to the paucity of love and care they receive.

When Anya, one of Vanya's seven roommates, turns 6 next year -- assuming she survives -- it is not clear whether she will be able to go to school: Most refuse to accept children who have the virus, Vedmed said. Several years ago, she said, the St. Petersburg circus banned the hospital's children from a show out of fear that they would infect others in the audience.

When the hospital opened in 1991, she said, residents of the nearby sleepy village of Metallostroi, 10 miles east of St. Petersburg, surrounded the fence and tossed rocks and empty bottles at hospital walls.

"They yelled: 'Get out of here!' and 'We don't want no den of prostitutes and drug addicts!' and 'You'll infect our groundwater with AIDS!' " Vedmed recalled. The daylong siege of the hospital ended only after doctors explained to the villagers that HIV is not airborne.

'RATHER THEY ALL DIED'

Health officials say such attitudes linger, because of long-standing prejudice rather than simple misinformation.

Despite the efforts of numerous AIDS awareness groups, most Russians -- even doctors who work with HIV-positive people -- continue to treat those with the virus, from infants to adults, as social outcasts.

"Instead of trying to treat people who have HIV, they would rather that all the infected people just died and took their illness with them," said Nikolai Panchenko, president of the St. Petersburg Society for People With HIV-AIDS.

In addition to the difficulty of child victims getting into schools, people with HIV are illegally expelled from schools and universities, and fired or barred from dentists' offices, said Alexander Goliusov, head of the Russian Health Ministry's HIV infection and treatment department. The discrimination is seldom blatant and usually comes under the guise of other complaints, so it is rarely appealed.

"People who have HIV and AIDS in Russia are completely isolated," said Nedzelski, whose center has a hot line for people who have the virus. "They have no rights -- or they don't know their rights."

Zhuravlyova, who started working at the Ust-Izhora hospital in June, said she did not tell her mother or neighbors about the children in her care, fearing that she would be ostracized.

"When my husband found out, he nearly made me quit," Zhuravlyova said. Her husband finally allowed her to keep the job when her 17-year-old daughter spoke up.

"She said: 'Dad, don't you know that HIV is only transmitted through sex or dirty needles?' " Zhuravlyova said.

She offered a shy smile and patted Vanya on the head. "It's a shame that we are less educated than our kids."

THE SERIES

With the highest rate of HIV infection in the world, Russia is headed toward an AIDS pandemic unless officials take action. A look at the crisis and Russia's response. .

-- Sunday: The epidemic An outbreak that began among gays and intravenous drug users is spreading dramatically because of unsafe sex.

-- Today: Ignorance HIV-positive Russians - including children - suffer because of a woeful lack of understanding of how HIV is transmitted.

-- Tuesday: Prevention The Russian government spends little on prevention and treatment of AIDS.

E-mail Anna Badkhen at abadkhen@sfchronicle.com.

HIV-POSITIVE CASES IN RUSSIA BY AGE GROUP

Percent of people HIV+ registered through 2001.

14 years old and under 1%

15 to 20 years old 20%

20 to 30 years old 63%

30 to 40 years old 12%

More than 40 years old 4%

Source: Russian Health Ministry

Chronicle Graphic
020729
SC020727

Always watch for outdated information. This article first appeared in 2002. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2002. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .