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. Last Updated: 07/27/2016

Just Out of Reach




Effective AIDS drugs have reduced mortality rates in the West, but in Russia, only the rich and the lucky have access to them.


'It seems everyone has forgotten this problem,' says Kriminskoi. 'There's no news. There's nothing scandalous happening. People just keep dying.'


Nadya sat on the edge of the worn mattress on her iron-frame bed at Moscow's Sokolinaya Gora AIDS clinic, fighting to keep from falling asleep. "All I do is sleep, day and night. I know I'm near the end," said Nadya, 37, her light-blue eyes full of tears. "I want to live. I want to see my daughter grow into a beautiful woman. But I am so tired."


Nadya didn't know how or when she was infected with HIV, the virus that causes AIDS. She no longer cared. For the past nine years, Nadya had read and heard about new AIDS treatments in the West -- some that appeared to be prolonging life indefinitely -- but her insurance money couldn't finance anything beyond the conventional and toxic antiviral drug, AZT. Hunched over in her white hospital gown last July, her cropped, blond hair disheveled and dark at the roots, Nadya summed up the bitter sentiments shared by many of Russia's AIDS patients. "The government spits on us. They have money for war but not for saving lives," she said. "They think the sooner we die, the sooner we will be out of their society." Nadya died two months later, just before her daughter's ninth birthday.


The majority of Russia's estimated 3,000 AIDS patients are denied the latest treatments because of high costs that the government refuses to finance. Shunned by a society ignorant of the disease -- patients interviewed for this story requested pseudonyms -- they are quietly dying off. The country is on the brink of an AIDS epidemic with the number of diagnosed cases increasing exponentially each year. When Nadya discovered she was infected with HIV in 1989, there were only a handful of infected people in the Soviet Union, which had kept the virus out with its closed borders. Now more than 7,000 people are registered as HIV-positive and doctors estimate the actual number is closer to 15,000.


Most AIDS patients in the United States and Europe receive a new form of treatment called combination therapy, also known as triple therapy. Patients take a "cocktail" of three types of drugs, one of which is often AZT. AZT prevents HIV from reproducing within the white blood cells, but also simultaneously poisons healthy cells, thus weakening the body in the course of treatment. A combination of drugs, however, has shown evidence of boosting the number of infection-fighting white cells. With widespread use of combination therapy, deaths from AIDS-related illnesses plunged 44 percent in the United States in the first six months of 1997, compared to the same time period in 1996.


Russia's health authorities have registered for use in the country five of the eleven different drugs that may be used in combination therapy, but the government has yet to authorize their use for publicly funded treatment programs because of their high cost. The daily medication costs $12,000 to $15,000 annually. Only about 100 residents of Moscow -- where medical insurance companies have the largest budgets -- are currently receiving combination therapy. Most patients take only AZT, which is produced in Russia and costs about $80 for 100 daily dosages.


Tver, about 170 kilometers north of Moscow, ranks among Russia's top five cities in numbers of HIV carriers. Since the first infected resident was identified two years ago, 700 of the city's 700,000 people have been diagnosed as HIV-positive. Reflecting the nationwide trend -- in which more than 80 percent of carriers are infected through drug use -- 76 percent of Tver's patients are believed to have contracted the virus from contaminated needles.


"The last thing I want to tell a patient is that there is no cure I can offer him," says Boris Molodov, a doctor at the local AIDS clinic. As he speaks, he motions toward the door, behind which sits a young man nervously fingering the hem of his blue flannel shirt. The patient, 18, was a heroin addict for several years, before quitting six months ago. He has tested HIV-positive. "If I tell them that the government doesn't support treatment, that it drags its feet in matters like this, he will give up all together. He doesn't need that," Molodov says.


Most of the patients in Tver are young, male drug users. A quarter of them live in the city's run-down, overcrowded prison. Much of the spread of the AIDS virus in Tver is due to opium -- from which heroin is derived -- coming in from Ukraine. Because many patients say they shot up "safely," using their own needles, doctors believe the virus spread quickly after hundreds of syringes were dipped directly into a single jar of contaminated opium.


In a few years, many of Tver's HIV-carriers are likely to contract AIDS. Molodov is pessimistic about the prospects of the government funding combination therapy on a large scale. "They have an interest in not recommending it," he says, referring to the growing budget deficit. Although federal law guarantees HIV-infected persons "free outpatient and hospital treatment," few patients actually receive it. The Health Ministry approved the spending of 40 million rubles ($6.5 million) in 1997 on a wide-ranging AIDS program that included education, diagnosis and treatment. But not one ruble of federal funds was dispensed. Most patients are unable to work and survive on disability pensions that amount to less than $100 monthly. In the 1998 budget, federal spending on AIDS was reduced to 30 million rubles. No money has been released so far.


"The Finance Ministry is unlikely ... to make treatment for AIDS patients a prioritywhen millions of people are still not receiving wages," says Alexander Goliyusov, the chief AIDS specialist at the Health Ministry's department of infectious diseases. "It's a terrible truth." Although a long shot, Goliyusov's department opened a bank account where people could contribute money for AIDS treatment and advertised the fund in Moscow newspapers. Sure enough, no contributions came in.


"The limitations we have had in addressing this disease have been incredibly frustrating," says Viktor Golnikov, head doctor of the Sokolinaya Gora clinic. "Being unable to prescribe necessary treatment because the government won't pay the bill would put any doctor in an uncomfortable situation."


Alexei, 37, lost his wife last year to AIDS. He himself has lived with the virus for nearly 10 years. But not a day passes when he doesn't think of his wife and why she had to die. Both Muscovites, they were infected nine years ago after shooting up heroin with a contaminated needle. Drug use was rare during Soviet days, but the two were part of a small, elite group of disillusioned youths, regularly experimenting with drugs smuggled in from Central Asia.


Alexei learned he was HIV-positive after a test at a drug rehabilitation clinic in Belarus. After his first blood test, he was recalled for a second. "The doctor explained there had been an error in the way they tested, and they needed to do it again," he recalls. "But when I saw he was wearing rubber gloves, I knew." Alexei and his crowd dubbed AZT "the deadly treatment" because of its destruction of healthy cells, and both Alexei and his wife refused the drug.


"It seems everyone has forgotten this problem," says Gennady Kriminskoi, president and founder of the AIDS support organization My i Vy, or We and You. "There's no news. There's nothing scandalous happening here. People just keep dying." Launched five years ago and subsidized by foreign grant money, My i Vy runs the country's only 24-hour hotline on AIDS. The group also holds support group gatherings for HIV-carriers.


One Saturday earlier this year, about 20 people, most of whom were HIV-positive, sat around a table laden with vegetable salads, cabbage pies and small glasses of vodka. "We prepared this party in honor of Dima's birthday, which was Tuesday. He was 31. But he couldn't be here today because he's fallen sick. So, let's drink to his health," Kriminskoi says, raising his glass. The HIV patients dread the day they will be similarly toasted and the day when their names will be painted in black on the gray brick "wall of tears" at the entrance of the office that lists more than 300 names of friends who have died from AIDS-related illnesses.


With no government funds, My i Vy can do nothing more than run a hotline and host small meetings. Kriminskoi is struggling to pay rent for his small office as non-profit organizations receive no tax breaks and, like other businesses, are required to work from designated office space areas which usually demand higher rents.


Hostile attitudes toward the disease have stifled other efforts to help. Last summer most of a television and billboard campaign warning against unprotected sex was ordered shut down one week after it was launched. Conservative politicians had disapproved of the $70,000 campaign, planned and financed by the Dutch branch of the non-profit group M?decins Sans Fronti?res, which included billboards prominently featuring the words "safe sex" with a photograph of a condom. "It's a shame, because those were very good posters," Goliyusov says. "But as you know, some people in this society don't tolerate the word 'sex,' ... even in a public announcement warning against the spread of AIDS."


Nikolai, 30, once had such hostilities. "It was a disease other people got, an unclean disease," he says at the My i Vy gathering. Dressed in a gray suit with his shoes buffed to a gleam, the owner of a construction company is now struggling to accept his own infection and battling to "beat this thing." Several years ago Nikolai began visiting prostitutes a few times a month. When he saw a program on television warning about the high incidence of HIV-infection among prostitutes, he became worried and had a test for the virus.


"I didn't really know what it meant at first, and I was shocked that something could injure my body so deep down," he says, of his HIV-positive results. "I felt fine, but the doctors assured me I was not fine." Although jesting and laughing during the meeting, he later lay down at one point, complaining of a migraine headache and bad mood. Nikolai plans to pay for his own combination therapy and is in the process of opening a second construction and renovation company to earn more money. He won't hire any construction workers who are HIV-positive, he says, because of the possibility of transmitting the disease following an accident on the job. "The person could go into shock. A colleague could dress the wound and get infected," he says.


Ivan, 46, is one of the 100 or so Russians receiving combination therapy. The treatment of about 50 of the patients is funded by Moscow insurance companies, 30 -- including Ivan -- are receiving a free, year-long supply from a foreign pharmaceutical company's donation, and some 20 are paying for treatment themselves. "There are patients who, to protect their reputation, don't even try to get treatment from the government or hospital," says Golnikov, the doctor at the Sokolinaya Gora clinic. "They are well-known and well-off."


Six months ago, Ivan nearly died. Covered with scabs from the skin infection karposi sarcoma, common among AIDS sufferers, he was too weak to even sit up in bed. Ivan managed to live on a regiment of AZT for four months longer than Nadya, in the same hospital. His doctor then found him a slot in the combination therapy program.


"I feel so good. I never thought I would feel this good again," says Ivan, who believes he was infected by another man, but doesn't know when. He is now out of the hospital, back at his home in the southern suburbs of Moscow and taking energetic walks every day. He worries, though, that when the year-long donation runs out at the end of this year, he will be without means to continue treatment. "After all this struggle," he says, "that will mean my quick end."


Because he doesn't live in Moscow, if Viktor contracts AIDS, the only treatment available to him will be AZT. Viktor lives in the Black Sea city of Sochi. He tested positive for HIV 12 years ago and believes he contracted the virus through homosexual relations. He tries to maintain a low profile in his home town. Homosexuality was still a crime punishable by jail when Viktor discovered he had the virus. "I had to be very careful with what I said to the doctors," he says.


Viktor's doctor at the AIDS clinic in Sochi refused, without explanation, to treat a skin disease that had scarred his torso. The clinic also refused to perform crucial dental surgery. Commuting to a Moscow clinic that will treat him, he has exhausted his savings on medical bills and train tickets.


Earlier this year, Viktor decided to sue the Krasnodar regional government -- in the first case of its kind in Russia's legal history -- on charges of denying treatment guaranteed by the law. "The law doesn't specify that we are entitled to 'out-of-date' or 'cheap' or 'ineffective' medications. We should be able to receive medicines that actually work," he says. With the help of his attorney and My i Vy, Viktor is trying to remain anonymous through the court procedures. "It is a huge risk," he says. Three months ago when he wanted to lodge a letter of complaint about his lack of treatment with the city prosecutor, the office told him that it could not guarantee that "the office secretaries who processed and filed the letter would not gossip."


Some of Viktor's friends with AIDS grumble that he is being selfish in demanding treatment from the government, when most patients are getting by with minimal or no care. But Viktor counters that he wants to set a preceden t for other patients. He doesn't want to suffer the same fate as another patient in Sochi whom ambulance workers refused to assist once they discovered she had AIDS. "I am going to sue for my rights to medication, to treatment and to life," he says.


John Ranard received a grant from the Open Society Institute to photograph the problems of drug use and AIDS in Russia.