Russia Doesn’t Want Anyone to Know About Its HIV Epidemic
The government refuses to acknowledge that it isn't supporting more than a million people infected by HIV/AIDS.
One December morning last year, I called the largest HIV clinic in Moscow to get my blood tested for HIV/AIDS. I went to the clinic, located in the industrial area of the city, far away from the center. My trip took over an hour: two buses, a metro, and a long walk down a thin, slippery trail. I imagined how harrowing this ride would be like for someone who wasn't, like me, confident that their test would come out negative.
The HIV clinic—a tall concrete building, towering over the landscape, was cold and grey—a departure from the glamorous image the city otherwise tries to project. That day, it was full of people averting their eyes—HIV patients who had come to collect their medicine. The only bright thing were posters and flyers with slogans like "AIDS is not an accident!", "Love and fidelity are your natural defence!" and "There is no 'safe' sex". The posters were a reminder of the government's latest effort to battle HIV with propaganda, but also of its negligence.
In 2015, the number of HIV cases detected in Russia bypassed 1 million. According to the latest government data, 103,000 new cases were detected in 2016 alone. But given that only about 20 percent of the total population is tested, epidemiologists estimate that the real number of people infected is closer to 1.5 million. In a country with a population of 143 million people, this is enough to declare an epidemic, according to the World Health Organization.
Several regional governments have spoken about about the ongoing HIV/AIDS crisis, but the federal government has continued to deny the complete reality. Doing so would mean admitting, to the whole world, its own failure to treat the disease.
My experience in Moscow, although not pleasant, was brief and reassuring. If I were diagnosed with HIV, I would still receive all my medication for free at this very clinic. The Russian law would protect me because I was lucky to live in the capital, where things like drug shortages, or lack of medical personnel are much less likely to happen than in a poorer regions.
But the reality is harsher outside the capital. The rapid spread of the virus, and the lack of funding in the public health system means that there is no capacity to treat everybody who is infected. About 870,000 people currently live with HIV, because 1 million has been registered since 1987, but 205,000 have died. Only 32 percent receive medication, compared to the 90 percent needed to eradicate the epidemic, according to the UNAIDS.
Russia's outdated protocols for treating someone with HIV/AIDS require patients to take many pills a day, which makes it harder for the patients to stick to the regimen. It takes about two years for new drugs approved by the FDA to be licensed in Russia, and as the result, many drugs used currently are outdated—like Stavudine (known for its many side-effects and taken out of WHO recommendations in 2016), which was widely used until the beginning of this year.
Lack of financing, which in some regions, like Altai (southern Siberia) can lead to critical shortages of drugs. Out of 85 regions, 20 only have the supplies for a month. Shortages mean that more patients will have to take drugs like Stavudine—or nothing. Some of them still manage to cope with the shortages.
Irina, 30, is from Volzhsky, an industrial city in the south of Russia. When I spoke to her in March, she had not received any medication from her local hospital since the beginning of 2017. "I manage to get some medicine from other HIV positive patients in Russia who are so kind as to donate me some pills by mail," she told me."I've been relying on those for almost 3 months now."
Irina, who works in sales and has children to take care of, says she can't afford to pay for the drugs out of her pocket. "And they are supposed to be free, that's the law," she said. She used to go to the hospital to ask about her drugs every week, taking time off work, and writing complaints to the health ministry, but to no avail. "Now, I just call them, I don't want to go there in person anymore."
This could change. Dr. Elena Orlova-Morozova, the head clinician of Moscow District AIDS Prevention Centre, estimates that with the funding increases in 2017, and the Federal Antitrust Agency pushing down the prices of some drugs, it is possible to cover 40 percent of the infected population in 2017 to 18. She hopes that the current shortages are a temporary failure of the system which will be overcome soon.
While government support has been sparse, Russia could have made headway on its fight against AIDS with foreign aid money, but continues to refuse help. СПИД.Центр (AIDS.Centre), an NGO advocating for the rights of the people living with HIV, said that officially declaring an HIV epidemic would allow the country to receive aid from international organizations, and to negotiate lower prices for drugs.
"Russia is refusing to accept the status of a third-world country, and because of this it doesn't receive international aid and cheaper drugs. And as a result, we're worse off than Moldova, a much poorer country, that is doing all that," said Anton Krasovsky, the head of AIDS.Centre.
Vadim Pokrovsky, the head of Federal AIDS Centre, told me the very approach of the Russian government is problematic since it expects that the health ministry alone can cure the epidemic. "But in order to really tackle it, it should cooperate with the Ministry of Interior, as they are the ones in charge of drug policing, and the Ministry of Trade, as they can push down the prices of condoms." He said the lack of sex education makes it worse.
The main source of infection in Russia, however, is intravenous drug use. There are no reliable statistics as to how many of Russia's drug users have HIV, but the epidemiologists estimate it at between 50 and 70 percent of the population.
"The drug users are the most problematic patients we have," said Orlova-Morozova. "We do not have the means to properly treat the drug users, as we usually only see them when they're taken into intensive care with AIDS. You probably won't see them among the regular outpatients."
Drug addicts are harder to treat for HIV, as they often have trouble following a schedule, taking pills every day and turning up for regular checkups at the hospital. The side-effects of the medication can also overlap with their withdrawal symptoms—one more reason to drop the therapy. Many of them avert hospitals trying to avoid stigma and bad treatment in hospitals.
Russia also has a zero-tolerance policy towards drugs, which means that police can arrest anyone in possession of drugs, in any quantity. That makes it risky for patients to get treatment. "If they are detained in the street by the police, they might spend a few days at the police station, without the access to their medicine," said Maxim Malyshev, from Andrey Rylkov Foundation (FAR), the only NGO in Moscow that focuses on the rights of drug addicts, and conducts a daily needle exchange program.
Some countries have tackled this problem with opioid replacement therapy, in which a drug called methadone is used to combat heroin addiction. But Russia banned this in 1998 after the Federal Drug Control has declared it a dangerous substance. The other argument is that replacement therapy "can create a mass of people so dependent on drugs that they can be used in actions against the government or its representatives."
But this policy has led to drug users' near-complete isolation from the medical community. The health ministry stands alongside the drug police and opposes methadone. Epidemiologists, such as Dr. Pokrovsky, and UNAIDS ambassador for Eastern Europe Michel Kazatchkine, have urged Russian government to change its decision, but it is unlikely that any change will come this way given the conservative turn in Russian politics..
Today, the only link between the drug addicts and the doctors are scarce outreach and needle exchange programs. "It seems that Russian drug policy is based on the assumption that the addicts should suffer, that they do not deserve humane treatment, such as replacement drugs," said Malyshev.
Meanwhile, Russia's health care workers are up against many challenges, from the struggling healthcare system to misinformation.
They have to inform their patients who might be getting information from one of the numerous HIV denialist communities, which are very active on the Russian internet. "So much so that they appear on the 1st page of both Google and Yandex search for questions on HIV treatment and symptoms," said Peter Meylakhs, a sociologist who researched their activity.
These communities mostly include people who share anti-scientific, conspiratorial views, calling HIV a scam, and encouraging their members to spread this "knowledge", and eventually stop people from taking anti-retroviral drugs.
"They are very good at creating an illusion of a free choice between taking the medicine and dying of side-effects, and not taking it and living happily ever after. Many of the HIV deniers do not have the disease themselves—but some do, and they are in the biggest danger."
These deniers often endanger the lives of their children, in case they stop giving them HIV drugs." To date, the internet activist group "HIV/AIDS deniers and their children" has established that at least 60 HIV-positive deniers have died of AIDS-associated disease. Out of them, 13 are children denied treatment by their parents.
While these groups remain on the fringes of society, the Russian government sometimes acts like the bigger denier of all. It can spend millions on vanity projects such as World Cup stadiums, while leaving hundreds of thousands of people die of a treatable disease.
"I don't know what can make our authorities change their mind," said Meylakhs. "But I hope it happens before 1 in 10 people in the country is infected."