Kids and aids

Some years ago a large group of children at a Volgograd hospital were infected with HIV through negligence on the part of medical personnel. The consequences of the tragedy are still making themselves felt.

I met Sasha’s mother at the Volgograd AIDS Prevention and Treatment Centre.

Ten years ago, this ordinary Volgograd family could be called happy. Husband and wife both had a job, and their sons, aged seven and four, were healthy and strong. The trouble began in February, when Sasha, their elder son, caught pneumo­nia at a swimming pool. The boy was taken to hospital. When Sasha was discharged six weeks later, his mother (we will call her Lyudmila) breathed a sigh of relief. Everyone had already forgotten about the hospital when one day an ambulance suddenly pulled up at the entrance to the hostel where the family was living. Without a word of explanation, the doctors, who for some reason were accompanied by police, ordered them to go to the hospital to have some tests taken. They couldn’t believe the diagnosis: Sasha was HIV positive.

Sasha

“The first year was sheer hell”, Lyudmila recalls. “I was forced to quit my job, so we had to live on my husband’s wages. That, however, was not the worst of it. People started to treat us differently. When they learned about our tragedy at the hostel, we had to move out.”

News of the Volgograd outrage spread not only through the country but also abroad. Thank to that, Lyudmila’s family did not end up on the street but was given an apartment.

“At first, we just stayed at home and did not venture outside,” she says. “We were afraid of meeting someone who knew about it.”

They were not sure how the virus spread, and not trusting doctors, they were afraid of catching it themselves. And they were worried sick about their younger son.

“Every minute we had to make sure that Sasha did not injure himself while playing,” Lyudmila says. “Even the tiniest scratch tiniest.”

The virus that settled in the boy’s organism began to have its effect. Sasha’s immune system gradually weakened. Any cold would get him laid up for weeks. Increasingly, he had to miss school. Sasha started getting low grades.

“We got somehow until he was in the seventh year at school,” Lyudmila says. “Then the principal called me in and asked to remove Sasha from school. The pretext was poor academic performance, but I understood perfectly that the real reason was different. After all, some of the kids were doing even worse. Simply the principal was tired of listening to complaints from parents and teachers.”

Sasha had to cover the eighth- and ninth-year curriculum at home. When he received his school-leaving certificate, he enrolled in a community college.

“Of course he realizes that he will not get a job even though he really wants to,” Lyudmila says. “At 16, he was registered as a disabled person and granted a pension of 304 roubles ($ 12.5) a month. This is probably the most he can ever hope to get until the end of his life. Even so, education is his only chance of social life today.”

Lifetime Diagnosis

“Other mothers will tell you similar stories,” says Nadezhda Gorshkova, chief of the Volgograd AIDS Prevention and Treatment Center. “The only thing that pro­bab­ly makes it a little easier for Lyudmila is that she has a husband who’s got a job and can support his family somehow. But not all men have been up to the mark. Approximately one in three is a single-parent family, and mothers, as a rule, cannot go out to work.

“An HIV patient needs to take 17 to 20 pills four times a day to support his im­mune system. Omit to do this just once, and the virus can modify so that a new drug will have to be prescribed. Furthermore, every mother has to take her child to the Republican Clinical Center, in the Leningrad region, twice a year. Add to this the prolonged and frequent diseases that are inevitable with an impaired immune system.”

The most a mother with a sick child and without a job can count on is about 700 roubles a month in pension and social allowances.

Meanwhile, neighbouring Kalmykia has managed to alleviate the problems of such families considerably. Dina Sanjieva, chief of the Republican AIDS Preven­tion and Treatment Centre, told me that since January every family with a sick child has been receiving an allowance from the republican budget equivalent to 25 times the official minimum wage a month. If a mother takes her sick child to a rehabilitation and recreation facility, she will receive 6,000 roubles for the purpose.

Recently the local parliament passed a law whereby every family that has lost a child to AIDS is entitled to compensation of 120 times the official minimum wage. This provision covers everyone whose child has died from AIDS in the past ten years.

The Latest Victim

Since the beginning of this year, 14 HIV-cases have been registered in Volgo­grad. The latest victim was Sasha’s 18-year-old girl-friend.

“When I saw them together, I warned my son “You keep your hands off that girl,” Lyudmila tells me.

According to Lyudmila, Sasha told his girlfriend about his disease but that did not deter her. The young people’s parents knew absolutely nothing about this until Sasha himself decided to get his lover to take a test. It proved positive.

“The most difficult thing for me was to talk to the girl’s mother,” Lyudmila says.

Nadezhda Gorshkova said that this was not the first such case.

Alexander Yevreinov

The Moscow News 12/08/2003