AIDS Campaigners Share a Mission

When Gennady Roschupkin found out he tested positive for HIV, the virus that causes AIDS, the doctor congratulated him on his good luck.

"He told me, 'You should be happy, son. At least it's not syphilis,'" recounts Roschupkin, one of Moscow's first AIDS activists.

"Today isn't that different. Doctors still don't know what AIDS is. I watched a lot of my friends die faster than they had to because no one knew how to treat them, or even really what AIDS was. It became my mission to spread accurate information about AIDS."

Roschupkin's mission has been taken up by AIDS Infoshare Russia, a nonprofit group where he works as a program coordinator. The group is committed to providing Russian organizations, medical establishments, government offices and individuals with current and accurate information regarding the AIDS epidemic.

"We're trying to be a one-stop support center," said Julie Stachowiak, an American who founded the group. "We offer individuals and Russian AIDS-relief organizations access to information about HIV/AIDS, technical assistance and methods to communicate with the international health community."

AIDS Infoshare Russia also works with the World Health Organization and the U.S. Agency for International Development to keep the international health community informed about AIDS and treatment of people diagnosed as HIV-positive in Russia. The State Duma has recently passed a bill requiring foreigners to be tested for AIDS before being granted a visa. Health Ministry figures indicate that Russia now has 894 AIDS cases, but the World Health Organization estimates the actual number is as much as 10 times higher. Many people in high-risk groups are reluctant to undergo testing.

The center's main attraction is its huge library. Catalogued along the guidelines of the U.S. Centers for Disease Control and using CD-ROM technology, the library has more than 40,000 newspaper articles, book reviews, newsletters, videos and pamphlets on everything from conscientious care for HIV-positive people to a guide entitled "Safe Leather Sex." It's materials are in Russian, English, German and French.

AIDS Infoshare Russia also publishes a newsletter, offers a database with information about the 86 AIDS centers located in Russia and offers assistance in grant writing and project development for groups and individuals.

Another one of the group's projects, Russian AIDS Relief, offers material and moral support to people with AIDS. Located in a two-room apartment near the Taganskaya metro station, the center is lined with goods like clothing, medicine and today's special: 400 safety syringes provided by a benefactor who prefers to remain anonymous.

"We get some pretty weird stuff," Stachowiak said. "We've gotten soap, Uncle Ben's rice, Twix bars. We will accept anything, as long as it can help someone. We're always looking for donations."

RAR also provides a $25-a-month stipend to someone whose been diagnosed as HIV-positive and has been hospitalized for more than four weeks. The money has been used to buy medicine for an asthmatic young man with AIDS and to pay funeral expenses for a man abandoned by his family.

"We're trying to relieve the sense of hopelessness that can accompany the diagnosis of being HIV-positive," Stachowiak said. "I think that's been one of the most important aspects of the center from the start. It's one of the main things I hoped to bring over here."

Stachowiak arrived in 1993 with newly acquired dual master's degrees in international affairs and public health from Columbia University in New York City. Stachowiak said she hoped to put her degree to use and pursue a personal interest.

During her time at Columbia, Stachowiak lived in Manhattan's Greenwich Village neighborhood, where she volunteered at an AIDS relief center, and interned at an orphanage in Karelia in northwest Russia. The two very different locales offered similar experiences: Both areas were suffering from breakdowns in the health-care system.

In Karelia, Stachowiak said she saw 13-year-olds with syphilis and other sexually transmitted diseases. The orphanage, following the breakup of the former Soviet Union, often could not treat its children. In Greenwich Village, Stachowiak said she saw a community that also did not have a means to treat itself: Scores of people continued to die from AIDS. But there people were beginning to respond aggressively to the situation.

"Both places were in a lot of ways unbelievable," Stachowiak said. "AIDS care in the U.S. wasn't where it should be, but after being in Karelia, I was sure a little money could go a long way. I figured it was one area where the West could have a definite impact on Russia."

In October 1993, Stachowiak used her own money to start the center. The group now receives USAID funding and it's seven-person staff -- two Americans and five Russians -- is trying to affect policy toward AIDS on the grass-roots and national levels.

The group has sponsored dances, offers lectures at schools, is planning a candlelight March through Moscow's streets in May and hopes to distribute condoms on Earth Day, next April 22.

On the national scale, Roschupkin has been tapped to help the government draft legislation regarding AIDS. Also, AIDS Infoshare Russia is working with another relief group, the AESOP Center, to develop an electronic-mail database.

"We try to hit all levels," Stachowiak said. "Educating as many people as possible about AIDS is our major concern. If people have information and work as a network, they can get a lot more done. When shared, information can be very powerful."