"The most important thing is to get people to come to us," an employee of a Russian non-governmental organization (NGO) that works with drug addicts told DW. In the past few years, there has been an increase in the use of synthetic drugs, says the employee, who wished to remain anonymous. "These people are afraid to leave their homes, many of them suffer from paranoia and psychosis. Unlike opiate addicts, they often don't understand what they are doing at all, at the moment it doesn't matter to them whether they are using someone else's syringe, whether they are using a condom or whether they are doing drugs in a group."
He also told DW that his NGO is trying to help these people by connecting them with doctors or providing them with consultations with psychologists and psychiatrists. "This is a very expensive pleasure. But half of those with whom we manage to establish contact with great difficulty, are coping - they have stopped using drugs and have started taking care of their health, some have even found jobs", the DW interlocutor tells.
However, he himself may soon lose his job: the Russian NGO he works for exists mainly thanks to international support, and now funding may stop completely. "We won't survive on Russian money alone," he assures.
They are cutting aid programs
About 2.1 million people live with HIV in Eastern Europe and Central Asia. This is the only region where the death rate associated with the virus continues to rise: since 2010 it has increased by 48%, according to data from the Joint United Nations Programme on HIV/AIDS (UNAIDS). In this part of the world, the largest number of people with HIV is in Russia.
The vast majority (94%) of new cases fall on so-called key groups and their partners: drug users, sex workers, homosexuals or transgender people. All of them are particularly vulnerable: because they fear violence or discrimination, they cannot go to a doctor and avoid any contact with the state - for the same reason.
"It is easier for these people to contact a non-profit organization that works with this community. They trust such organizations, there they receive real help from consultants who have also gone through this path and know perfectly well what those affected need. But these services are the first to be cut," Eamonn Murphy, UNAIDS regional director for Eastern Europe and Central Asia, told DW.
Pressure inside Russia
"Bringing a drug addict to an HIV/AIDS center or helping a mother of many children from a remote village to get to such a center and get pills for herself and her children, given that she herself is in a difficult situation and is having a hard time coping with life, is priceless. The state has never dealt with this and will never deal with it," HIV activist Maria Godlevskaya told DW.
Some of these aid organizations have now reduced, significantly changed or completely ceased their activities because they are no longer able to receive funding. Others have been banned or forced to withdraw. This year, Elton John's Elton John AIDS Foundation (one of the world's largest charities fighting AIDS) and the Eurasian Coalition for Health, Rights, Gender and Sexual Diversity were declared "undesirable" by the Russian government, says Godelevskaya.
In 2022, "LGBT propaganda" was banned in Russia, and in 2023, the Supreme Court of the Russian Federation declared the "international LGBT movement" an extremist organization and banned it. Now in Russia, no NGO can work with representatives of the LGBTI community - even if it wants to, the activist says. She, like other experts with whom DW spoke, predicts a spike in the number of new HIV infections, as well as that more and more people with HIV will stop going to therapy.
They are testing many people for HIV, but the wrong ones
At the same time, the Russian Ministry of Health reports that the number of new cases of infection continues to decline: in 2024, according to the ministry's data, it fell by almost 12% compared to 2023 - to 48,400. Rospotrebnadzor indicates 51,984 new cases, but also claims that they are gradually decreasing.
"We don't know the real numbers", says Evgeny Pisemsky. A few years ago, he was forced to close his organization "Phoenix Plus", which helped HIV-positive people and gay men, after it was declared a "foreign agent". Pisemsky himself no longer lives in Russia. "The donors have left, and the state is spending money on war. We consult and inform, but this is a drop in the ocean", he points out.
The authorities insist that a huge number of HIV tests are being carried out in the country - almost 37% of Russians have been tested in a year. This gives some result, but there is no point in testing grandmothers in polyclinics, attention should be paid to vulnerable groups, says Pisemsky.
In his organization, while it was still working in Russia, about 10,000 representatives of vulnerable groups were tested annually - and almost one in ten was found to have HIV. According to Pisemsky, this means that there is an epidemic in the country. "Only NGOs have access to vulnerable groups, and the number of tests they conduct is greatly reduced. So the epidemic becomes invisible," he emphasizes.
"For some time, all this may not go beyond the key groups and develop there. But as soon as the lid is lifted, everything will come out, that is, the infections will spread to the general population through heterosexual sexual contact," predicts international consultant on HIV infections Alexey Lakhov.
Money for prevention is decreasing
Meanwhile, initiatives are also left without international support, which makes HIV prevention even more difficult. The Global Fund to Fight AIDS, Tuberculosis and Malaria has found itself facing a serious financial crisis and the main donors, including the EU countries and the USA, have reduced their contributions. So far, a total of 11.3 billion dollars have been collected instead of the planned 18 billion. These cuts are already having an impact on HIV prevention and treatment programs: UNAIDS data shows that millions of people are losing access to life-saving drugs and protective equipment.
As a result, the epidemic, especially in Eastern Europe and Central Asia, will continue to grow, and prevention will become even more limited, UNAIDS regional director Eamonn Murphy told DW. According to him, the mortality rate there is still too high, and many people decide to seek help too late: "We want them to turn to us earlier - then we can help them more effectively and prevent other cases of infection."
UNAIDS funding is also being cut seriously: as a result, the organization in the region has already closed its offices in Belarus and Armenia, and by May it will also close those in Kyrgyzstan, Kazakhstan, Moldova and Tajikistan. "We didn't want to do it, but we don't have enough resources and we're forced to change our model of work," says Murphy. As of this year, the organization no longer has any representatives in Russia.
Censorship and the growth of risky behavior in Russia
In Russia, many people are still afraid to talk about HIV. "At school, nothing is heard about this issue, and at home, parents are ashamed to talk about it," notes Maria Godlevskaya. She claims that prevention among young people is very late in Russia. "When they allowed us to talk to them about HIV, it was too late, because many of them had already started having sex and trying psychoactive substances. Now it has become even more difficult: in educational institutions you can hear a lecture on HIV, but you cannot talk about the ways of transmission and methods of protection," she criticizes.
Against the backdrop of Russia's ongoing war against Ukraine, people are under enormous stress, which means they are more susceptible to risky sexual behavior, says Alexey Lakhov. "Teenagers cannot be told anything about how to protect themselves, nor will the state buy and distribute condoms to them, because this is contrary to "traditional values". It is also unacceptable to talk about prevention that does not evaluate a person, but simply helps him reduce risks," Evgeny Pisemsky states.
Author: Irina Chevtaeva