NIZHNY NOVGOROD, Russia — It was a gloomy winter day, cold but snowless, and Nizhny Novgorod’s central square was only dimly lit. For Svetlana, a 47-year-old teacher, that gloomy Monday was especially memorable: she heard the words that closed off her dreams for the future like the nailed-down lid of a coffin: “You have HIV,” said the physician she’d gone to see. “I am your doctor for the rest of your life.” His tone was like ice.
When Svetlana walked out of the Regional Prophylactic Center for AIDS, her best friend waiting for her in the car noticed that Svetlana’s face looked gray, her eyes sunken. Svetlana was beginning to withdraw deeply into her own troubles, and from that day refused to discuss her health issues, denying that she had ever been diagnosed with HIV.
“I am healthy, let me live my life,” she told her friends.
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The center that so frightened Svetlana was the only state institution treating HIV and AIDS patients in a city of 1.3 million people. Its website has not been updated since 2011. Under “About the Center,” it says that there were 8,534 HIV positive citizens in Nizhny Novgorod— but that is not true. In fact, last year there were more than 14,000 patients, with an increasing number of ordinary women getting infected through sex. Nationwide, in 2014 Russia counted 90,000 new cases, the fastest-growing HIV/AIDS epidemic in Europe.
Last year, the fast-shrinking city of Nizhny Novgorod lost its city manager. The Kremlin’s party, United Russia, finally decided to rid of Mayor Oleg Sorokin, who was famous for his corruption, huge villas on the French Riviera, and poor work. Dirt, broken pedestrian walkways, poor illumination, and miserable medical service were the remarkable features of a city with a 794-year history. But there were no social protests. People were afraid. So, somehow, they tolerated their city’s decline.
Even greater fear paralyzed people with HIV and AIDS, who, like Svetlana, were too scared to take a blood test or seek proper treatment, since a positive diagnosis immediately turned their lives into hell.
Under Russia’s criminal code, article 122, Russians with HIV or AIDS can go to jail for three years for deliberately passing infection to other people. Prison is a surer bet than medical treatment. Citizens with HIV or AIDS cannot be admitted to any ordinary clinic, only to specialized centers, often grim and miserable places similar to the one visited by Svetlana. Now she had to forget about a little plastic surgery on her eyes that she’d been saving for. No surgeon in Nizhny Novgorod would agree to operate on her with HIV.
Moscow’s civil society is braver. Civil activists pushed the Kremlin to change the legislation, to punish doctors who refuse to treat HIV positive patients.
Anton Krasovsky, a leader of the AIDS Center working around Moscow and the Moscow region, told The Daily Beast, “Most Russian doctors terrify patients with HIV and AIDS. The diagnosis is often pronounced as if your life is hopelessly doomed,” he said. Yet at the same time there has been a stubborn refusal to admit the extent of the problem.
“Last year we had a revolutionary breakthrough,” said Krasovsky. “We finally, for the first time ever, heard the words ‘HIV epidemic’ from a high government official.”
At a recent government meeting, Prime Minister Dmitry Medvedev admitted that there was a growing problem.
In fact, because they feared they’d become humiliated outcasts, thousands of Russians, especially drug addicts, preferred not to know whether they had HIV, and instead of receiving the right treatment, continued to spread the epidemic.
Often, regional HIV/AIDS centers have not provided patients with proper medicine. “That threatens not only HIV patients’ lives, but the lives of healthy people, too,” Medvedev admitted.
Officially, 986,657 Russians are HIV/AIDS patients, “but non-officially, it is more likely up to 1.5 million people,” Krasovsky said.
Cancer is also a huge problem. Russia and China are the world leaders, with 122.5 people per 100,000 diagnosed with cancer, and 2015 will be remembered as the year when Russia gained heightened awareness of suicide cases among cancer patients, of older people who killed themselves after months of painful suffering.
In some societies, philanthropists might try to take up the slack left by government failings. In Russia, we don’t really see that. More often, we see cases like the deputy of the St. Petersburg parliament, Vitaly Milonov, who was spotted wearing a watch that cost more than $10,000.
In the past, Milonov was famous for describing homosexuals as “sick” and for trying to take Lady Gaga and Madonna to Russian court. Did the deputy feel ashamed for wearing a watch that was worth more than an average Russian’s annual income? “I want to spit in the faces of these investigators,” Deputy Milonov responded.
At the street level, a social struggle against the HIV epidemic had a chance to become a popular trend. The figures did sound threatening: Russia counted about 10,000 new HIV/AIDS positive cases every year, mainly in the 20-to-50 age group.
By the end of 2015, the Federal Service for Surveillance on Consumer Rights Protection and Human Wellbeing confirmed: Russia was facing an overwhelming HIV/AIDS epidemic, with numbers growing in cities like Nizhny Novgorod more than 30 percent faster than in 2014. The Russian health ministry warned: by 2020, the epidemics could jump by 250 percent.
Krasovsky said that his AIDS center would do everything to push the Russian government to de-stigmatize the disease and reform its approach to HIV/AIDS. Thanks to civil movements and the effort of leading doctors, the Moscow Regional Center on AIDS managed to enlarge its facilities by more than 400 square meters. But even a 1,000-square-meter clinic was too small for the 39,000 people of the Moscow region with HIV and AIDS.
“Our priority is to make Russia realize that there are no second-quality people, everybody has equal rights to be treated with dignity,” Krasovsky said.
