First cases

According to the Moscow Scientific and Practical Centre for Addiction Medicine, the first cases of human immunodeficiency virus (HIV) infection in the Soviet Union may have occurred as early as the 1970s through unprotected sexual contact with African students. But diagnosis was impossible at the time, as the first HIV screening was not carried out until 1987.^[13] Officially the first foreigner to die of AIDS in the USSR was in 1985. A thirty-year-old student of the Higher School of Trade Union Movement contracted HIV when he went to visit family in South Africa on holiday. He was later admitted to Moscow Infectious Diseases Hospital № 2 with pneumonia and died a month later. In the next two years, 219 infected foreigners were identified. In 1986, the first specialized unit to provide medical care for people living with HIV was opened at an infectious diseases hospital in Moscow. Initially, its patients were foreigners only; after a course of treatment, they were subject to deportation. By 1989, there were 485 HIV cases among foreigners in the country. Half of them were in Moscow and the rest in Odesa, Kyiv, Minsk, Leningrad, and other cities of the USSR.^[14] In Soviet state media outlets, incidents of HIV infection were explained as an attempt to discredit USSR relations with friendly African countries and spread false notions about the disease. For example, the newspaper Izvestia asserted in 1987 that AIDS had been "invented by the Pentagon in a laboratory of biological warfare methods". It was presented solely as a disease of capitalist society, which could not spread to the USSR, since homosexuality, drug use and prostitution were allegedly not practiced in the country.^[15] Although the carriers were subject to deportation, the virus began to spread gradually among Union citizens.^[16][17]

There are several versions of the spread of the disease within the country. The officially registered 'Patient Zero' was a Zaporizhzhia engineer and military translator, Vladimir Krasichkov, who was on assignment in Tanzania in 1981. During his service, he had sexual contact with a local carrier. When he returned to Moscow, where he worked in one of the military units, he had sexual intercourse with 25 conscript soldiers of the USSR who, after demobilisation, dispersed across the country. Five of them were later diagnosed with the disease. Krasichkov himself repeatedly sought medical attention and on 26 February 1987 he was diagnosed with HIV with AIDS as a result of an enzyme immunoassay. According to some media reports, the Ministry of Health tried to conceal the circumstances of his illness, allegedly taking a non-disclosure pledge from him in exchange for benign treatment.^[18] The patient died in the summer of 1991. Evidence of further spread of the virus varies. It is known that one of Krasichkov's five HIV-positive partners transmitted the virus to his wife and their child was born with HIV. He also donated blood to five other patients (according to epidemiologist Vadim Pokrovsky, three children were among them).^[19][20][21]

The first death from acquired immune deficiency syndrome in the country was registered in September 1988. The victim was Olga Gaevskaya, a 30-year-old evening student at the Leningrad branch of the Moscow Institute of Technology. She had contracted HIV between 1979 and 1985 when she had repeated sexual contacts with foreigners, in particular Africans. She received treatment in the following years, during which she was tested negative for HIV in 1988. Presumably no antibodies to the virus were found due to a poor diagnostic method. Doctors saved scarce test kits by mixing the blood of three to ten patients into one. A separate sample was taken from each patient only in case of a positive result. Gaevskaya was diagnosed with AIDS post-mortem, as antibodies to HIV were found in the blood. There is also evidence that the first death from AIDS in the USSR was recorded by Professor Andrey Kozlov in Odesa in 1988. His patient was a child who had been infected by his mother. After the incident, more children were tested for AIDS.^[13][14]

1990-2019

The WHO classifies the HIV epidemic in three stages. In the first stage, less than 1% of the general population and less than 5% in vulnerable groups are infected. When more than 5% are infected in one vulnerable group, the disease moves to the concentration stage. In the third, generalized stage, HIV infection extends beyond one group, the epidemic spreads to the general population,^[28] and the proportion of HIV-infected pregnant women reaches 1%.^[29] While in the 1980s there were sporadic outbreaks of infection in the USSR, the next decade saw a new phase in the spread of HIV, when the disease was most often transmitted through blood by injecting drugs.^[1]

According to the WHO, by the 1990s, there were 494 infected people (307 adults and 187 children).^[13][21] Nevertheless, the actual figures may differ. Before 1990, patients had to provide passport data for HIV testing. Those found to be HIV-positive were required to make a list of their sexual contacts, and the principle of medical confidentiality did not apply to them. For this reason young people preferred not to be tested for HIV or did it using false documents.^[16] Between 1987 and 1995, only 1,096 carriers were identified among the 160 million surveyed people.^[30] At the same time, diagnostic laboratories did not provide complete testing: only preliminary tests were performed at blood transfusion stations and AIDS diagnostic laboratories. The results were confirmed at the only AIDS diagnostic laboratory at the Central Research Institute of Epidemiology of the USSR Ministry of Health. The Ministry of Health of the RSFSR admitted tardiness in the deployment of preventive measures. Hospitals did not comply with the anti-epidemic regimen and did not conduct explanatory work among the population satisfactorily. Research institutes of the Ministry of Health of the RSFSR paid little attention to virus research. The work of scientists was not coordinated, there was no republican program of scientific research, no clear system of surveillance and preventive measures.^[26][27]

Researchers call 1996 the beginning of a new phase in the spread of HIV in Russia.^[1] It was preceded by an outbreak in the Ukrainian port city of Odesa, where the HIV strain was introduced from Central Africa in 1993. While in 1994 only 3 cases were diagnosed in the city, by 1995 the number had risen to 1021. The virus spread rapidly among injecting drug users (IDUs) in the former Soviet Union. After just one year, their share in the total number of Russian infected was 30.7%.^[31][3][32] During the first 10 months of 1996, the official number of persons infected with AIDS in Russia increased by 4.5 times; within one year, the total number of those infected almost doubled (from 1,090 to 1,925 carriers). The rapid growth in the number of infected people was attributed to high unemployment, the development of a shadow economy and a low level of living, which led to an increase in the number of drug addicts. HIV prevention measures were mainly aimed at the sexual channel of the virus spread. Special commissions at state AIDS centers distributed medications and determined which infected people to treat.^[11][33] The largest epicenters during this period were major agglomerations, as well as single-industry towns that experienced an economic crisis after the collapse of the Soviet Union.^[2][3]

Since 1999 the virus began to spread more and more frequently among people who engage in unprotected sex (both homosexual and heterosexual). Experts attribute this to the fact that HIV has reached saturation point in IDU communities, as well as to a decrease in the overall number of drug users. In 2003, for example, 17% fewer new IDUs were registered than in 2002. Large segments of the population were at risk, as injecting drug users (estimated by WHO at 1-2% of the population by 2005) were putting their sexual partners at risk. During the first decade of the 21st century, the proportion of this mode of HIV transmission became comparable to that of injecting drug use. Between 2000 and 2005, the share of newly reported cases of infection through non-sterile injecting needles fell from more than 90 percent to 66 percent. Experts noted the critical situation: by 2001, cases of HIV had already been registered in all regions of the country.^[19][34] Nevertheless, in the following years the rate of spread of the virus generally began to decrease, since parenteral drug use with an unsterile needle has a much higher chance of infection than unprotected sexual intercourse.^{[35][36][2][1]} While in 2001 the primary incidence rate was 55 cases per 100,000 people, five years later it was 20-23 cases per 100,000. Part of the reason for this decrease in the number of HIV diagnoses is that fewer tests were conducted in some high risk groups, such as injecting drug users and prisoners. From 2000-2004, there were 51% fewer tests among IDUs and 30% fewer tests among prisoners. This distorted the overall picture of the HIV epidemic in Russia. Starting in the middle of the first decade of the 21st century, the number of infected people resumed growing. By the end of 2006, 0.5% of the Russian population between the ages of 15 and 49 were officially registered as HIV-positive. Between 2006 and 2017, the incidence rate tripled, reaching 60 cases per 100,000 inhabitants.^[37][38][33]

The exact number of carriers in the country is difficult to determine, since health services have not kept up with the spread of the virus, and vulnerable groups are often reluctant to be tested.^[39] In addition, HIV infection can be asymptomatic for 8–10 years.^[40] For the most accurate calculation of the infected population, several estimation systems have been developed that give different results. If according to official data, the number of HIV-positive citizens in 2003 was only 235,000, then epidemiologist Vadim Pokrovsky testified about more than 700,000 infected people. The media called his estimates deliberately exaggerated, and the proposed "soft methods" of HIV prevention - "softening the brains of the population and preparing the ground for further colonization of the Third World". Antiviral prophylaxis was given a moral dimension: journalists emphasized marital fidelity and family values.^[41] State bodies did not support Methadone maintenance and Harm reduction programs, including syringe distribution to HIV-infected people. Since 2006, the Federal Drug Control Service of Russia have lobbied for a system of HIV prevention based on repressive methods requiring carriers to give up drugs entirely. A misguided belief spread among officials that high moral standards of citizens would help stop the AIDS epidemic, and the federal media silenced the problem.^[42][43] Chief Narcologist of the Ministry of Health Eugene Brun commented that “The medical community is generally skeptical about handing out syringes on the street, because by handing out materials, we draw attention to this area to those citizens who have never even thought about it. It's a kind of "drug propaganda".”^[44] Those non-profit charitable foundations that criticized the country's current HIV legislation, educated the population, and distributed condoms and disposable syringes to at-risk groups were often labeled as foreign agents. Their activities contradicted the state policy in the sphere of drug addiction and AIDS prevention and fell under the principles of post-liberal ideology. For example, in 2016, during the trial over the status of the Saratov-based NGO ‘Socium’, which received foreign funding, a guest expert described it as "a participant in a hybrid war waged against Russia.^[45]

When in 2008 the number of carriers reached 444,000, Federal Service for Surveillance on Consumer Rights Protection and Human Wellbeing acknowledged the state significance of the problem.^[46] A year later, according to estimates by various international and Russian experts, the real number of Russians living with HIV ranged from 800,000 to 1.5 million (1-2% of the country's adult population).^[28] In 2010, the Federal AIDS Research Center reported over 516,000 HIV-positive citizens. By that time, since the beginning of the epidemic, more than 60,000 HIV-positive people had died for various reasons.^[1] There was an increase in the number of infected pregnant women (from 0.3% in 2003 to 0.62% in 2011), which indicates a concentrated epidemic stage according to the WHO classification. Eight regions of Russia recorded over 1% of HIV-positive pregnant women as early as 2008.^[4] In contrast, the proportion of infected adolescents decreased from 24.7% to 1.5% between 2000 and 2012. Presumably, the reasons were prevention programs in the country's educational institutions and an increase in the age at which risky behavior begins to be practiced.^[47]

In 2005, of the more than 1.4 million people infected with HIV in Europe and Central Asia, about 61% were Russian citizens.^[48] In 2005, of the more than 1.4 million people living with HIV in Europe and Central Asia, about 61% were Russian citizens.^[33] One year later, 90 percent of all HIV-positive people in Eastern Europe and Central Asia lived in Russia and Ukraine. The most affected regions of the Russian Federation were Samara, Irkutsk, Leningrad, Orenburg, Sverdlovsk, Tyumen, Ulyanovsk, Chelyabinsk, Kemerovo and Kaliningrad oblasts, the city of St. Petersburg, and the Khanty-Mansiisk Autonomous District. A large cluster of drug users had formed there, and by the end of 2009 between 0.5% and 1.2% of the population in these regions were officially registered as carriers. HIV predominantly affected the young population of the country: 70.5% were diagnosed before the age of 30.^[30] Experts feared that this would soon lead to an increase in the dependency ratio, as well as affect the rate of long-term economic growth. According to various estimates, by 2025-2035 the population loss due to AIDS will reach 20-30 million people.^[48] During the next decade, the annual increase in HIV-positive people in Russia was 5-10%.^[49] The number of deaths from HIV was increasing by about 20% annually. According to Rospotrebnadzor, by early 2013, 140,000 HIV-infected people had died for various reasons.^[50] A year later, the number of carriers in the country exceeded 900 thousand people, 80% of whom were under 30 years old. At the same time, the deputy prime minister of the Russian government Olga Golodets stated that the total number of carriers exceeded one million, with more than 6,000 new infections daily.^[51] About 40% of all carriers were female. One in twenty men aged 30–35 years old was a carrier of HIV.^[33][13][43]

In 2015, the Federal AIDS Center officially registered 1 million HIV-positive people. Of these, approximately 53% of infections were related to drug use, 43% to sexual contact between men and women, and 1.5% to homosexual contact.^[52] Despite the relatively high number of surveys (10-19.3% in 2006-2015,^[29][53] epidemiologists assumed that the real number of carriers was 7 times greater.^[54] Half of the new HIV cases were attributed to 22 regions.^[55] The most critical situation with the spread of HIV was observed in regions where drug trafficking took place. Thus, Rospotrebnadzor considered Irkutsk (1.7% of the population infected with HIV) and Samara (1.6%) Sverdlovsk (1.6%), Kemerovo (1.5%), Orenburg (1.2%), Leningrad (1.2%), Chelyabinsk (1%) problem regions. Tyumen (1%) regions, St. Petersburg (1%).^[56] In November 2016, the press service of the Yekaterinburg Health Department reported that every 50th resident of the city is infected with HIV. In 15 regions, more than one percent of pregnant women were infected. In many cases, they found out about their status when they were registered at the maternity clinic.^[42][49][54]

By 2017, according to WHO data, Russia became the leader in the number of HIV-infected people in Europe (1.16 million people). This year alone 104 thousand new cases of HIV were registered, of which 53% were detected at the last stage, for 55% the routes of infection were not identified. Approximately 2.8% of the country's most economically active population, men aged 30–39, were HIV-positive. Women under 30 years of age were more frequently infected, as they had more sexual contact with older men.^[57][49][58] Russian Health Minister Veronika Skvortsova reported different figures: 998,500 identified HIV carriers, 81% of whom did not know their status. An American-Swedish research group in the journal PLOS Medicine pointed out that there are actually more than 2 million infected people in Russia.^[5][59]

By the end of 2021, there were 1.137 million people living with HIV in the country, and 70.5% of them were registered for medical care. According to Academician Vadim Pokrovsky, this figure is about 70% of the real number of people living with HIV.^[60] The number of regions with high HIV rates (more than 0.5% of the population) increased from 22 to 36. More than half of the country's total population (60.1%) and 82.8% of those infected with HIV resided in these regions. The most acute situation was observed in 22 regions (more than 1% of the population).^[61]

Most-affected regions in Russia^[62]

Federal subject	Per 100,000	Total cases
Kemerovo Oblast	2,211	58,218
Irkutsk Oblast	2,068	49,118
Sverdlovsk Oblast	1,907	81,807
Samara Oblast	1,818	57,343
Orenburg Oblast	1,588	30,862
Chelyabinsk Oblast	1,410	48,547
Khanty-Mansi A.O.	1,344	22,687
Novosibirsk Oblast	1,337	37,256
Leningrad Oblast	1,329	25,163
Tyumen Oblast	1,266	19,546
Perm Krai	1,263	32,570
Republic of Crimea	1,191	22,650
Krasnoyarsk Krai	1,155	32,972
Kurgan Oblast	1,145	9,373
Altai Krai	1,136	26,089
Ulyanovsk Oblast	1,108	13,501
Tomsk Oblast	1,097	11,745
Saint Petersburg	1,082	58,282

Since the beginning of the 21st century, the portrait of the average HIV-infected person has changed markedly. While in 2001, 87% of carriers were diagnosed at the age of 15-29, in 2019, 84% were first diagnosed at the age of over 30. According to statistics from the AIDS Center, 71% of those infected were economically active adults 30 to 50 years old. One of the reasons cited by epidemiologists was the high cost of condoms and lack of risk awareness.^[59][12] A new trend in the spread of the virus was its spread from Russia and Ukraine to Central Asian countries due to work migration.^[63]

Current state

According to UN estimates, in 2021, Russia ranked among the top five countries in terms of HIV prevalence, accounting for 3.9% of all newly diagnosed cases in the world.^[64] In the previous two years, the number of infections diagnosed in the Russian Federation decreased slightly (from 94,000 to 71,000), which was attributed to lower volumes of testing during and immediately after the covid-19 pandemic.^[6][65] The growth of the HIV epidemic in the country over 30 years has led to the situation that at the beginning of 2022, 1.137 million Russians were infected out of 144 million total population.^[6][66][67] Nevertheless, most experts believe that the real number of HIV-positive people is significantly higher, as a noticeable share has not yet been identified.^[11][12] This is reinforced by the ultra-conservative state policy promoted by the Russian Orthodox Church and the authorities since President Putin's return to his third term in 2012.^[68][69] Activists confirm that the 2013-2020 toughening of homosexual propaganda laws actually bans certain health and social services - HIV prevention in the LGBT community is now often equated with "propaganda."^[66][70] As a result, by 2021, government discrimination and police harassment of vulnerable populations hampered HIV prevention efforts.^[71][67] UNAIDS acknowledged that the "gay propaganda law" would undermine the Russian authorities' goal of eradicating AIDS by 2030 and called for its abolition.^[72]

In addition to the stigmatization towards people living with HIV, human rights activists and volunteers are concerned about the lack of funding. Despite the increase in the budget for the purchase of HIV drugs, in 2021 only slightly more than 30% of registered patients received them. This is due to the fact that the allocated budget did not cover the price increase: if in 2020 over 505 thousand annual courses were bought, in 2021 just over 391 thousand. Regional investments did not improve the situation - 72.2% of the 3.7 billion rubles of additional funding went to Moscow, the Moscow Region and St. Petersburg. As a result, therapy coverage declined by 11-15% annually.^[73] HIV-positive Russians reported that treatment was in fact only available in large cities, and that Russian AIDS centers recommended conjugal sex as prevention (which is not consistent with WHO recommendations). Foreign funding for WHO prevention measures threatens volunteer organizations with foreign agent status.^[74] For instance, the Andrey Rylkov Foundation which was a supplier of free clean needles and condoms to drug addicts in Moscow. In 2020, Russian deputy Vasily Piskarev accused the organization of promoting drugs in response to the foundation's assistance to drug addicts during the coronavirus lockdown.^[68][75]

The position of HIV-infected people worsened after 2022 Russia invasion of Ukraine and the imposition of Western sanctions. In 2021-2022, the Russian Ministry of Health reduced the share of unparalleled expensive foreign drugs for HIV treatment from 67.3% to 55% of the total volume of ARV procurement.^[76][77] Already in November, ‘Patient Control’ organization reported a shortage of Eviplera produced by Johnson & Johnson. Eviplera is one of the most expensive and popular combination drugs.^[78] Shortages were reported in 12 regions, of which the shortage was particularly acute in the Tver region, Komi Republic, and Crimea.^[79] Of the total number infected, a study by the British charity NAM estimated that in 2022 only 45% were receiving antiretroviral therapy.^[80] And in February 2023 the media reported that in some colonies prisoners began to be denied life-saving therapy.^[81] By December 2023, the HIV infection levels had reached 'epidemic proportions' in 19 regions with hot spots in the Kemerovo, Tver, Samara and Tomsk Oblasts, where more than 1.8% of all pregnant woman have been diagnosed with HIV. In Moscow, Crimea, Leningrad Oblast and Chechnya, less than 50% of patients were able to access therapy.^[82][83]

In 2022, the head of Rospotrebnadzor's Research Department for Epidemiology and AIDS Prevention estimated the total number of HIV-infected people to be 1.5 million (of whom 1.1 million were laboratory-confirmed cases). This figure diverges from the estimates of the Ministry of Health (about 850,000), which believes that the situation with HIV in the country has "stabilized".^[84][85]

Although officially most Russians with HIV/AIDS are exempt from military service, reports of such illegal conscriptions have surfaced since the partial mobilization was announced^[11] At the same time, the Ukrainian authorities confirmed that the Wagner Group was recruiting prisoners with infectious diseases, as there were people with hepatitis C and HIV infection among the Russian prisoners.^[86] Nevertheless, there have been multiple offers on the Internet to buy fake HIV certificates that allegedly allow one to avoid being drafted.^[87]

Incidence

New HIV cases in Russia per 100,000 (2018)^[88]

>130   100-129   70-99   50-69   20-49   <20

As the virus spread, the incidence rate grew geometrically. In 1987, it was 4.2 cases per 100,000 people; by the beginning of the 21st century, it was 157 cases. The main hotbeds of the spread were regions with a bad economic situation, where injecting drugs were spread. For example, in 1998 in Irkutsk Region alone, HIV was diagnosed in 32 people, a year later this figure increased almost 100-fold - up to 3157.^[89] According to the UNAIDS, total number of people infected in 2002 was four times higher than the official figures.^[90] Between 2007 and 2018, Russia was the world's third fastest-growing country in terms of HIV incidence, after South Africa and Nigeria.^[40] In 2013-15, average number of those infected increased by about 10% each year.^[91] In 2016-2017, the statistical handbook of the Ministry of Health fixed the average growth of HIV-infected people at 86 thousand nationwide. The incidence of HIV infection was 58.4 per 100 thousand people, the overall increase was about 1%.^[92][93] Although significant jumps were observed in some regions. In Moscow, the number of new infections rose from 2,400 to 2,900, an increase of 20%. In the Chukotka Autonomous District the increase was 151% (from 29 to 73 cases per 50,000 population), in Tyva - 133% (from 9 to 21 people per 310,000 population). But according to the ministry itself, it is incorrect to judge the percentage ratio based on these data, since a small number of carriers originally lived in these regions.^[94] By 2018, statistics showed that 10 people were infected with HIV every hour in Russia.^[89] In addition, in 2016-2018, the number of small towns with the number of infected people exceeding the national average by 2-4 times (Severouralsk, Kirovgrad, Togliatti, Verkhny Ufaley, Novotroitsk and others)] has increased.^[26][56]

Officially the fact of epidemic is stated when more than 1% of the population is a carrier of the virus (for Russia - about 1.4 million).^[12][95][96] In November 2022, Rospotrebnadzor estimated the total number of infected people at 1.5 mln, by 2030 their number could reach 2 mln. The Ministry of Health, whose methodology is different, called these figures an estimate. According to the Ministry, the total number of HIV-positive people in the country was almost two times less - 850,000.^[97][98][99]

The Ministry of Health also denied the UNAIDS ranking in which Russia was among the five world leaders in the rate of HIV infection - according to its data, for 2019-2021 the incidence fell by 31.4% (from 58.6 to 40.2 per 100 thousand people).^{[100][101][102]} Rospotrebnadzor estimates, on the contrary, correspond to the data of the United Nations Joint Programme on HIV/AIDS - 48.7 per 100 thousand people or, roughly, 71 thousand new cases in 2021.^[6] In the WHO European Region, Russia led in the number of newly diagnosed HIV infections — it accounted for 55% of all cases, of which almost a third were diagnosed at a late stage.^[103] The most affected regions were the following 22 subjects of the Russian Federation

Russian activists describe the situation as critical. In 2015, co-founder of AIDS.Center Anton Krasovsky described the situation in the country as the largest epidemic in the world.^[16][104] In 2019, Vadim Pokrovsky (epidemiologist) classified the situation in the most affected regions as a generalized epidemic stage, when the virus spreads beyond vulnerable groups.^[105] International experts also ascribe the status of the epidemic to the situation in Russia.^[106]

Mortality

In the early stages of the epidemic, key vulnerable groups were reluctant to be tested for HIV and refused therapy. As a result, health services could not track the spread of the virus promptly, and carriers found out about their diagnosis in the last stages of the disease. Between 2000 and 2007, the increase in the standardized HIV mortality rate was 54% for men and 69% for women. By the end of the period the rate reached 4.3 cases per 100 thousand inhabitants. In 2007 alone the number of deaths exceeded 3.5 thousand people.^[39]

The HIV incidence rate increased from 187.3 to 472 cases per 100,000 people between 2007 and 2017. The increase in the number of carriers indicated delayed diagnosis, low treatment coverage, and late initiation of therapy. As a result, the mortality rate from HIV increased 5.5 times during the same period, most of those infected died in the working age (from 20 to 59 years old). In ten years, the share of HIV-positive people in the total number of deaths from infectious and parasitic diseases increased from 11% to 57%. The mortality rate varied greatly across the country, forming clusters of high mortality (more than 21 cases per 100 thousand population): Middle Volga and Ural (Samara, Ulyanovsk, Orenburg, Sverdlovsk, Chelyabinsk, and Tyumen regions); southern Western Siberia (Kemerovo and Novosibirsk regions, Altai Krai); Baikal region (Irkutsk region, Buryatia). The head of the Federal Center for AIDS Prevention and Control Vadim Pokrovsky believes that if such trends persist, by 2031 the mortality rate from HIV infection will exceed the mortality rate from tumors.^{[39][107][108]}

During the first two decades of the 21st century, there was a rapid increase in mortality from HIV infection in both men and women. The highest rates were registered in the regions of the Siberian and Ural Federal Districts.^[109] The COVID-19 pandemic had a negative impact on mortality statistics among HIV-positive people. They were more severely affected by the new virus, and, presumably, as a result, the number of deaths among them in the first 10 months of 2021 increased by 5.4% compared to 2020.^[65] Over the entire period of observation, 424,900 people, or 27.2% of all detected cases, had died of HIV in Russia by the beginning of 2022. Meanwhile, 15% of this number died in the last two years-about 32,000 in 2020 and 34,000 in 2021.^{[7][8][6][39]}

Increase in the cumulative number of registered cases of HIV infection among Russian citizens in 1987-2021^[88][110][6]

Calculation methods and their limitations

Government bodies and researchers cite conflicting statistics about the incidence of HIV due to different methods of counting.

• The Ministry of Health counts the number of people who applied for medical care and presented a passport and SNILS. The press service of the Russian Ministry of Health calls its own data "the only official and most accurate source of information about the situation with HIV infection in the country," since all other counting systems are of an estimative nature.^[111]
• Rospotrebnadzor counts the percentage of HIV-positive results in the total number of blood tests performed. As of 2018, Russia was the only country in the world that practiced polyclinic registration of patients with HIV. A number of experts criticized the current system. According to Academician Vadim Pokrovsky, this practice leads to a difference between the recorded and real numbers.^[112]
• The predictive estimation system takes into account data from medical examinations of pregnant women, population health surveys (at the household level) and populations at high risk of HIV infection, data from the registration of detected cases, as well as data from all other types of monitoring. On this basis, scientists determine the estimated number of HIV-positive people and the margin of error of the calculations.^[12][104]

Vertical transmission channel

Vertical transmission of HIV (from mother to child) was common in the early stage of the epidemic. Thanks to the development of antiretroviral therapy, it has been possible to reduce the number of such infections. Without preventive measures, the risk of vertical transmission during childbirth is 25% to 50% (this rate depends on viral load and the health of the mother).^[50] If patients receive therapy, the risk is drastically reduced. Between 1987 and 2015, only 6% of children born to HIV-positive mothers were found to have antibodies to the virus. By 2015, the rate had dropped to 2.2%, one of the best levels in the world.^[55] This result was achieved by developing a system to prevent perinatal HIV transmission. By 2018, 93% of HIV-infected women in labor were under observation. Of these, about 2/3 already knew they were infected before they became pregnant. Children with HIV infection were 99% covered by outpatient care, and antiretroviral therapy coverage was 91%. Data from 2019 indicated that with timely therapy, the risk could be reduced to 1.2%. Only 165 children out of 13747 born to HIV-positive mothers were infected with the virus in the first year of life. Another 63 children became infected with HIV during breastfeeding. Over the entire surveillance period, 205,675 live children were born to HIV-positive mothers in Russia by the end of 2019, antibodies to the virus were detected for 11,322.^[61][92]

Medical prevention of vertical HIV transmission consists of testing pregnant women and prescribing antiretroviral drugs to the mother and the baby. If a woman has no indication for ongoing ART, she is prescribed treatment from 26–28 weeks of pregnancy, at delivery, and to her baby after birth. Sanitary regulations permit delivery if the mother has a viral load of more than 1,000 copies of HIV RNA per milliliter of plasma. If the viral load is unknown, a cesarean section is practiced (after the 38th week of pregnancy). Mothers are motivated to avoid breastfeeding. Chemical prophylaxis for children of HIV-positive mothers is started from the first hours of life, but no later than three days after birth or from the last feeding of breast milk with mother's milk (subject to its further withdrawal).^[124]

In Russia, double HIV testing of all pregnant women applying to antenatal clinics is enshrined by law; HIV testing of spouses and sexual partners of pregnant women has been introduced in regions highly affected by HIV.^[92] Despite the mandatory nature of testing, as of 2011 in some regions testing was conducted on a fee basis.^[91]

HIV Infection Rate in Russia by Known Factors of Infection, 1987-2018^[88]

Central Federal District

The epidemiological situation in different regions of the Central Federal District (CFD) varies greatly. Thus, in 2009-2012 the average growth rate of HIV-infected people in the CFD was 32.5%. The maximum rates were observed in Lipetsk (56.1%), Smolensk (53.2%) and Voronezh (50.75%) regions, the minimum — in Tula (23.4%). At the same time, the district was in the top three in terms of the rate of primary disability due to HIV-related diseases. The growth of AIDS patients in the CFD was 86.6%,^[135] the increase in the number of deaths of people with HIV was 83.7%.^[136] By 2020, the total number of HIV-infected people reached 206.9 thousand, with the region traditionally among the leaders in terms of testing coverage (over 21-29% in 2013-2020).^{[137][138][139][140]}

Moscow was the leader in terms of the number of tests and detected cases in the federal district for 2019-2020 — about 10 thousand HIV-positive people were detected per almost 4 million examined sera. In comparison, in the second leading region — the Moscow region — only 1.7 million tests were conducted with positive results in 3.7 thousand people. The situation in the two subjects was still better than in most regions — for example, in the Kemerovo Region 3.6 thousand cases of HIV were detected per 600 thousand people tested.^[137] The relatively good statistics in the central regions are influenced by good regional funding and a higher standard of living. For example, in 2019 the Moscow region ranked second in the country in terms of the number of people receiving antiretroviral therapy.^{[88][136][139][140][141][142]} On the other hand, according to Vadim Pokrovsky, head of the Scientific Center for AIDS Prevention and Control at the Central Research Institute of Epidemiology of the Russian Federal Consumer Rights Protection and Human Health Control Service, Moscow's statistics on the incidence of HIV infection is affected by the specifics of data collection, which considers only people with a Moscow residence permit. Taking into account non-Moscow residents, the actual incidence of the virus could be much higher^[143]

Northwestern Federal District

The Northwestern Federal District as an administrative-territorial unit was formed by presidential decree in May 2000. The first cases of HIV infection on its territory were detected as early as 1987, when the epidemic began. At the beginning of the 21st century there was large-scale drug traffic passing through the Leningrad Region, which contributed to the rapid spread of the virus. In 2005 the incidence was 310.3 cases per 100 thousand examinees, in four years - 367.8. The most affected areas were St. Petersburg, where the index almost reached 1% of the total population, Leningrad Region - 0.7%, Kaliningrad Region - 0.5%, Murmansk Region - 0.45%.^{[144][145][56]} By 2015, the NWFD was in fifth place by the total number of carriers after Privolga, Siberian, Ural and Central federal districts. The average detection rate was 303.8 cases per every 100 thousand examinations. The lowest incidence rate was recorded in the regions of the Far North: in Nenets Autonomous District and Arkhangelsk Oblast. The leaders in terms of incidence were St. Petersburg, Leningrad, Kaliningrad and Murmansk regions. At the same time, the highest annual increase in the number of new HIV cases was registered in Komi Republic (80.7%), which is due to the proximity of the Urals Federal District.^{[146][128][147]}

By 2015, there were more than 109,000 HIV-positive people registered in the Northwestern Federal District, which accounted for 12% of the total number of carriers in the country. The incidence was 43.5 cases per every 100,000 inhabitants. In the next five years, the rate dropped to 33.7, but the total number of carriers continued to grow. In 2020, there were more than 115,000 people with HIV in the district.^{[146][128][147][137]}

Southern Federal District

Southern Federal District (SFD) is considered to be a territory with a stable HIV situation. Nonetheless, in 2010, despite a relatively high level of examinations among risk groups, insufficient detection rate was recorded in the district as a whole. In this period, the rate was 133.4 cases per 100,000 inhabitants. However, the high percentage of HIV-positive cases among tuberculosis patients (2172.9 per 100 thousand inhabitants) indirectly pointed to a higher prevalence in the region. This could be explained by the insufficient number of surveys. The Southern Federal District and the North Caucasus Federal District ranked last in terms of the total number of tests per inhabitant (0.156 and 0.094, respectively).^{[148][149][150]}

By 2020 the situation remained unchanged: 26.7% of every 100 thousand people in the Southern Federal District were tested against the national average of 27.7%. The total number of HIV-positive people was 83.3 thousand. The most problematic regions were the Russian-occupied Ukrainian Republic of Crimea and Krasnodar Krai, each with over 22,000 HIV-positive people. The most favorable situation in the district was observed in the Republic of Kalmykia, where only 292 carriers were registered.^{[128][137][151]}

North Caucasian Federal District

As of 2018, the North Caucasian Federal District was the region with the most positive figures. During the entire observation period since 1988, about 17 thousand carriers were registered on its territory, more than 5 thousand of them in the most affected Stavropol Krai. The rates were directly affected by the cultural peculiarities of the region. On the one hand, condemnation of premarital sex reduced their number, on the other hand, the taboo nature of the topic reduced the number of tests: in 2020, the percentage of those tested per 100,000 people was the lowest in the country (24.1%).^[152]

Volga Federal District

Since the beginning of the 21st century Volga Federal District is a territory with a high level of HIV infection and morbidity rates exceeding the national average. Population surveys in the first decade testified to poor preventive work in the region. For example, in 2009 only 25.5% of respondents in Tatarstan were aware of the risk of contracting HIV during sexual intercourse.^[28] By 2013, more than 65% of the territories of the Volga Federal District were characterized by high HIV prevalence. As of 2020, the Volga Federal District was the leader in the absolute number of registered HIV-positive people (over 244,000). The most affected region was Samara region, where more than 57 thousand carriers of HIV were registered. The Orenburg Oblast, the second highest in the ranking, had almost twice as few (30 thousand). The epidemiological situation in the Volga Federal District was complicated by the prevalence of ARV-resistant strains.^{[88][32][137] [153]}

Ural Federal District

Since the first decade of the 21st century, the Ural Federal District (UrFD) has had a difficult epidemiological situation. While in 1999-2001 in Russia as a whole the incidence of disease increased 2.4-fold (from 20.7 to 50.9 cases per 100,000 inhabitants), in the Urals Federal District it increased 15-fold (from 11.2 to 168.4). The leaders of the district were the Sverdlovsk, Chelyabinsk, and Tyumen regions, where a large number of IDUs lived. Thanks to preventive work among drug users in subsequent years, it was possible to slow down the rate of spread of the virus. In 2005, the incidence rate was 50.4 people per 100 thousand inhabitants; in 2010, the growth resumed and the rate reached 85.7. In 2008-2015, the largest number of tests was conducted in the least affected region - Yamalo-Nenets Autonomous District. The testing rate among IDUs in the Urals Federal District was higher than the national average: 1.38% compared to 0.9% of the total number of screenings. But in general, the district suffered under-detection, which affected the rate of spread of HIV. For example, in Kurgan region the incidence rate increased more than sixfold between 2008 and 2014. Although in 2015-2020 the incidence rate decreased markedly from 135.6 to 78.7 cases per 100 thousand people, but still exceeded the national average by more than one and a half times. By 2020 the total number of people registered with HIV in the Urals Federal District was 185,000, with 43% of them in the most affected Sverdlovsk Region.^[154][88]

Siberian Federal District

In the initial stage of the HIV epidemic in Russia, the Siberian Federal District (SFD) had a relatively low incidence rate. The first 2 cases were detected in 1989 and were due to Hospital-acquired infections of children. Up until 1996, only sporadic cases were recorded in the county, with the total number of infected reaching 44 people. In 1999 the virus began rapidly spreading among IDUs in Irkutsk Region, where over three thousand new carriers were registered during the year. In 1999, the number of infected people increased 28.8 times. Within four years the virus spread through Republic of Buryatia, Kemerovo region, Altai, and Krasnoyarsk region. The incidence in these regions ranged from 24.2 to 62.6 cases per 100,000 inhabitants. Since the beginning of the 21st century, SFD has been the leader in the number of IDUs, which was reflected in the rate of HIV spread. Already by 2005, the incidence rate in the district exceeded the national rate by 1.9 times.^[129] By 2012, the most unfavorable HIV situation was observed in the Irkutsk, Kemerovo, Novosibirsk, Altai, and Krasnoyarsk Krai.^[155][129] Against a backdrop of increasing incidence and a complex mix of carriers with a high percentage of IDUs across the county recombinant strains resistant to ART were spreading.^[156] By 2020, the total number of carriers in the SFD reached 237 thousand people, although the incidence dropped to 94.3 cases per 100 thousand population (from 127.5 in 2019). The most affected regions were Kemerovo, Irkutsk, and Novosibirsk regions, the least affected were Republic of Tyva.^[88][137]

Absolute number of first registered HIV cases in the Siberian Federal District, 1989-2012^[157]

Far Eastern Federal District

The HIV epidemic in Eastern Siberia and Far East has been studied less than in other parts of the country.^[158] In 2006-2018 in Far Eastern Federal District (FEFD), the average annual increase in the number of HIV-infected people amounted to 8.64%. As of 2010, more than 11 thousand people with HIV were registered in the FEFD, 72.4% of whom lived in Primorsky Krai. Within it, the distribution of carriers was uneven: Terneisky, Olginsky, Chuguevsky, Krasnoarmeisky, Lazovsky, and Anuchinsky districts recorded sporadic morbidity. This was explained by the inaccessibility of the territories, their remoteness from major foci of infection — Ussuriysk (73.94 cases per 100 thousand people), Dalnerechensk (70.11), Artem (55.19), Partizansk (48.37), Nakhodka (48.29).^[1]

By 2020, the incidence rate in the Far Eastern Federal District was almost half that of the national average and was approximately 39 cases per every 100,000 inhabitants. The most affected regions were Primorsky Krai, Buryatia, Zabaykalsky Krai, which accounted for about 70% of all HIV-infected people in the region.^[137][159]

Specifics of therapy in Russia

Antiretroviral therapy (ART) does not eliminate HIV, but inhibits its reproduction. This allows the carrier to live in an asymptomatic stage, the development of secondary diseases is slowed down. At the same time the therapy serves as a preventive measure and reduces the contagiousness of people with HIV. ART is a continuous combined etiotropic therapy. It is treated and monitored at AIDS centers in all Federal subjects of Russia.^[124]

Antiretroviral therapy for HIV and AIDS was first used in 1987 in the USA. It was based on the nucleotide drug Zidovudine. Academician Vadim Pokrovsky reported that "patient zero" in the USSR also received this medication. But there was no full-fledged ART system in the country at the time, and not all infected people had their viral load checked.^[16][17] Since the end of 1995, physicians have been using inhibitors, which formed the basis of combined ART. It implies simultaneous use of two nucleoside analogues of reverse transcriptase and one HIV-1 protease. In 1999 academician Alexander Kraevsky invented and registered the first Russian AVRT drug — Fosfazid. It is a substance that is formed by phosphorylation of Azidothymidine in the human organism. Clinical studies showed that 89% of patients tolerated the drug well, which made it possible to increase its dosage in ART systems. In the following decade, other drugs were developed, allowing more than 200 treatment regimens to be composed.^{[19][162][114]} International practice is to treat HIV-infected people as soon as antibodies to the virus are detected, when the immune system is not weakened yet.^[163] In Russia, medication is prescribed when the level of immune CD4 cells falls to the count of 350. In 2019, Evgeny Vornin, an HIV specialist at the Ministry of Health, reported that officially 90% of HIV carriers with such a score received treatment. But some epidemiologists and activists report that to save money, doctors delayed treatment, persuading patients to refuse it voluntarily. Often no therapy was prescribed until the count reached 200 units, which could lead to the patient's death from AIDS. In some regions, drugs are prescribed only after special training. Such an approach makes it difficult to obtain life-saving medications: not all newly diagnosed HIV carriers are able to pass the training course for their health condition. Also, according to activists, doctors can prescribe the initial regimen of treatment without taking into account the analyses and personal intolerance of patients. Only if the standard courses are not suitable for the patient, healthcare providers conduct special testing.^[54][106]

Treatment interruptions and discontinuation lead to the development of virus resistance.^[50][114] Russia has a complex patient profile, particularly IDUs, who often refuse regular medication.^[60] Thus, in 2019 alone, about 36,000 people interrupted their ART course.^[61] In addition, the virus is constantly mutating and developing new strains, resistant to all classes of ARV drugs. In 2015-2019, 5.2% of patients who were not previously on therapy were found to be drug resistant to HIV.^[115]

Despite side effects and the need to follow a strict treatment plan, ART is the most effective means of keeping HIV-positive people alive.^[40] The development of the ART system made it possible to increase the average life expectancy of HIV-positive people in the United States and Europe to 78 years by 2017. In 85% of carriers taking ART, the viral load was undetectable.^[92] This result is only possible with regular medication from the early stages of infection. Nevertheless, the results of the studies do not reflect the situation in Russia, although they help eliminate stereotypes and stigmatization of carriers.^[164] Vadim Pokrovsky also noted the need for comprehensive measures:

If a person is infected with HIV once, he or she will remain infected for life. [The population of our country is not growing, so the percentage of infected people is increasing. This will continue until new infections are reduced, until there are fewer HIV-infected people who die. The main focus of the Department of Health now is to provide as many HIV-infected people as possible with antiviral drugs. And those who get treatment are less infectious. But the data from HIV/AIDS in Africa show that even though treatment coverage there reaches 90 %, the figure that the Ministry of Health is aiming for here, it still only reduces the number of new cases by 10-30 %. Of course, it is necessary to treat everyone who is HIV-positive, no one disputes that, but we also need to educate people on how not to get infected with HIV.^[165]

In 2020, Patients' Control conducted this survey to find out how much money Russian citizens have to spend to receive medical care for HIV infection, including transportation costs, purchase of medications, paid diagnostics, and/or visits to paid specialists. According to the survey results, 12% of HIV-positive Russians buy antiviral therapy at their own expense.^[166]

State support

In 2005, the cost of antiretroviral therapy was more than $7,000 per person per year.^[48] Effective and affordable drugs only appeared in Russia a year later, when the government began to sponsor the Global AIDS Fund to join the G7. The international organization participated in the pricing of major manufacturers, which reduced the cost of drugs.^[89] After 2007, the situation with the supply of drugs worsened. By 2016, the state negotiated with pharmaceutical companies on its own. In order to reduce the cost, a number of drugs were included in the list of vital drugs. For example, this halved the cost of "Evipler" from 50 to 25 thousand rubles.^[106]

Before 2013, antiretroviral therapy drugs were purchased by the Ministry of Health of the Russian Federation and distributed among the regions. The system did not take into account regional distinctions, different patient populations, and the specifics of the drugs. Later, drugs began to be supplied on the basis of regional tenders, financed from the federal budget. As a result, the cost of a course of treatment differed in the regions, the difference could be as much as 20 times (according to some reports, 76 times). AIDS Centers were unable to procure the necessary amount of drugs, and HIV-positive people were assigned to centers in the regions where they were registered. Thus,  in Moscow, doctors illegally denied therapy to people without residence registration. Since January 2014, the requirements for the execution of state orders have been tightened. Regional officials were not introduced to regulations for tender documentation preparation. The timeframe for local auctions was delayed, for example, in Perm they were held only in the summer, when suppliers sold out their stocks. Some regions lacked didanosine, ritonavir, and other drugs.^{[167][168][169]}

During this period, the currency crisis and import substitution led to changes in the Russian antiretroviral therapy system. Because of the fall in the national currency, suppliers inflated prices by 20-30%. Doctors switched patients from foreign drugs to Russian less effective analogues. Of the 1,845 contracts, 614 were for generic forms of drugs, and the rest were for branded medications. At the same time, the cost of generics could be much higher than the market price, as officials indicated the cost of original medicines in the initial maximum contract price. As a result, in 2016 the cost of drugs in Russia and India, where companies regulated pricing under the influence of international funds, differed by more than 6 times.^[106] There was virtually no competition between suppliers. Thus, in Chechnya the company "Medtehfarm" won in more than half of the cases due to the lack of competitors, in Ingushetia the same was with "ArchiMed". As a solution to the problem, the general director of Rostec Sergey Chemezov suggested officially securing the status of antiretroviral therapy provider to the corporation Natsimbio. Although Nikolai Bespalov, development director of the analytical firm RNC Pharma, emphasized that Natsimbio was unable to supply the required number of the drugs.^[167]

The regional director of the UNAIDS Vinay Saldan pointed out that by 2014, therapy coverage in Russia was only about 40%.^[58] According to Anton Krasovsky, director of the AIDS.Center, after two years, only about 20% of people with HIV were receiving medication.^[106] In January 2017 it was 35%. By comparison, during the same period in Botswana the figure reached 90%, in Angola, South Africa, and Mozambique — 100%. In order to increase coverage and reduce the cost of treatment, the government reintroduced a system of centralized procurement by the Ministry of Health at the expense of the federal budget and subsidies of the subjects. Due to this the average cost of treatment per patient was more than halved — from 169,400 rubles to 84,000 rubles. Treatment coverage of HIV-infected people increased from 39.5% to 50.1% without raising additional funds.^{[16][63][92][170]} The BBC Russian Service reported other figures: almost half of the patients received an annual course of ART at a cost of 11.4-23 thousand rubles, 34% received a course of 63-88.6 thousand rubles, 10% received more than 130 thousand rubles, and for 6.4% the cost of treatment was unknown.^[26] Despite a significant reduction in procurement prices, the situation remained problematic in a number of subjects. Of the 24 billion rubles allocated for ARV procurement, most were centralized costs of the Ministry of Health. Regions did not allocate enough money, despite instructions from the authorities. The International Treatment Preparedness Coalition noted that 21 regions did not announce their own tenders. As a result, in 2017 the portal "Pereboi.ru" registered a record 509 reports of drug shortages in 45 subjects (according to other data, there were 700).^[171]

In 2018, Academician Vadim Pokrovsky reported that about half of registered infected people did not receive medication. According to other data, ART coverage was only 25%, with an overall increase in the number of infected.^[168] The press secretary of President of the Russian Federation Dmitry Peskov denied problems with the provision of medicines to citizens. Nevertheless, Yulia Vereshchagina, a representative of the "Patients' Control" movement, testified about the critical situation:

In the regions there is a shortage of a number of ARV drugs, due to which they change treatment regimens without medical indications. There are reports of short-term, monthly dispensations, so patients have to travel every month to pick them up, which is difficult for those who live in remote areas. Some medications are reported to be denied, forcing patients to switch to an incomplete regimen or remain without therapy altogether.^[172]

According to the WHO HIV strategy for 2016-2021, to end the epidemic it is necessary to identify at least 90% of all HIV-infected people and provide at least 90% of them with therapy.^[49] Despite Russia's commitment to achieve such targets, government programs determined the real number of HIV-positive people to be covered by therapy to be at least 60%. This would almost halve the rate of increase of the disease and prevent up to 40,000 new cases of infection annually. But in practice, in 2019, only 32 regions reached 70% ART coverage.^{[60][50][127]} Nationwide, it was 48.5% of the total number of carriers and 68.9% of those on dispensary care.^[95][165] The situation was worsened by the fact that the main work on combating HIV was concentrated in the 10-15 regions with the highest rate of spread of the virus.^[63]

In 2019, 19.3 billion rubles were allocated for the purchase of drugs for people with HIV.^[127] The cost of an annual course of antiretroviral therapy could reach 200-300 thousand rubles per person. At the same time the use of generics allowed the Ministry of Health to reduce the cost of several treatment options to 12 thousand rubles per year. Within the framework of import substitution programs, 27 antiretroviral drugs were produced in the country.^[92] By this time, more than 200 possible combinations of antiretroviral therapy drugs from Russian and foreign manufacturers had been used in Russia. But none of them was universal, which complicated the work of epidemiologists. At the same time, there was a severe shortage of qualified personnel in Russia familiar with the side effects and various combinations of ART with cardiac glycosides, synthetic antidiabetic agents, and other drugs. Vadim Pokrovsky estimated that about five hundred infectious disease specialists needed to be trained for the full operation of AIDS centers. But the federal budget provided funds only for the purchase of drugs.^[63]

Despite an increase in funding, the situation with drugs in the regions remained difficult. Errors in calculations in the formation of centralized procurement led to crises across the country. For example, in the summer of 2019, the Ministry of Health set a low price for "Lamivudine," and pharmaceutical companies refused to supply it.^{[63][170][173]} In particular, HIV-positive inmates in prisons of the Federal Penitentiary Service did not receive the drug. Since March, the Ministry of Health refused to consider their needs in targeted procurement, and the Federal Penitentiary Service had to conduct auctions on its own. But the supplier company "Natsimbio" did not receive a request for the drug.^[174]

In 2020, the government allocated 29 billion rubles for ART procurement. The number of HIV-infected people was constantly increasing, and according to experts, in a year the amount of subsidies for the full-fledged operation of AIDS centers should have been at least 100 billion rubles.^[12][95] In addition, medical institutions did not have enough specialists to work properly. At least 500 infectious disease specialists needed to be trained in 2020.^{[60][50][127]}

Methadone therapy

One of the most effective HIV prevention programs for IDUs is substitution therapy. In many European countries, instead of full treatment for addiction, drug users are offered alternative ways of using drugs under the supervision of medical personnel.^[175] HIV-positive IDUs are offered Methadone maintenance to help them more easily give up opiates. Critics of the method insist that the therapy does not fight drug addiction. Thus, the deputy chairman of the State Duma Sergey Zheleznyak believed that methadone therapy cannot be called therapy because it "does not treat".^[176] Advocates of the method believe that slowing down the spread of the virus is more important than fully curing a potential carrier of drug addiction. Experts named insufficient prevention efforts, the ban on drug therapy for opioid addiction, and the "law against propaganda of homosexuality" passed in 2013 as the main reasons for the deteriorating situation with HIV in the country.^[43][89] As a result, by 2015, Russia remained the only country in the world where parenteral drug use remained the predominant way of spreading HIV.^[54]

Developing vaccines in Russia

The development of the first Russian HIV vaccines began in 1997 at the Institute of Immunology of Russia, the GosNIICHB, and the Vector scientific center.^[177] Scientists developed three candidate vaccines against the virus, which were preclinically tested in Moscow, St. Petersburg, and Novosibirsk. In 2004, the Institute of Immunology began clinical trials of the drug HIVREPOL. It was a conjugate of recombinant Protein, replicating the internal protein and part of the HIV envelope protein, with the immunomodulator polyoxidonium.^[178] But in 2005, the development was phased out. A year later, during the G7 summit, the President of the Russian Federation recognized the need to develop the vaccine. In 2008-2010, with the patronage of Vladimir Putin, a trial program was launched again. For example, during this period, the Vector Medical Center was developing the KombiVICHvac vaccine against HIV-1. It combined B- and T-cell immunogens in a single design, which ensured formation of humoral and cellular immune responses.^[179] When all three vaccines passed the first phase of clinical trials, government funding stopped again. The teams of scientists broke up. In 2013, a grant from the Ministry of Industry and Trade under the Pharma 2020 program was won by a research team from St. Petersburg, but three years after the clinical trials, the funding was also terminated.^{[43][180][181]}

The main problems in vaccine development are the variability of the virus genome, the unique molecular and epidemiological composition of different territories, and the lack of a universal formula that affects several strains. Epidemiologists estimate that an effective drug will be available worldwide by 2028. But foreign drugs will not be effective for Russian HIV-infected people. In order to stop the spread of the virus within the country, it is necessary to develop our own vaccine focused on the country's dominant strain. Despite this, UNAIDS expert Eduard Karamov reported in 2018 that the majority of Russian research programs were terminated.^[180] A year later, only the scientists from the St. Petersburg State Research Institute for HIV and the Biomedical Center were still working on the research. They conducted their studies of the DNA-4 vaccine which consisted of four plasmid DNA, encoding proteins.^[182] In 2019, the Moscow City Center for AIDS Prevention and Control began testing a therapeutic HIV vaccine, which allegedly would allow a carrier to live for a long time without therapy.^{[180][183][181]}

State support

Epidemiological supervision

Since 1987, a system of epidemiological surveillance of HIV has been functioning in Russia, which includes: systematic collection of personalized data, mass voluntary and compulsory testing, epidemiological investigation of each case of HIV.^[38][113] As part of the regulations adopted in 1989, the Republican Scientific and Methodological Center for AIDS Control was established on the basis of the Moscow Research Institute of Epidemiology, as well as 5 regional centers: in the St. Petersburg Research Institute of Epidemiology named after Louis Pasteur, the Ekaterinburg Research Institute of Viral Infections, the Omsk Research Institute of natural-focal infections, the Khabarovsk Research Institute of Epidemiology and Microbiology, the Scientific and Production Association "Rostepidcomplex". They were engaged in coordination of scientific research and organizational and methodological assistance to healthcare institutions.^[27][92] Nevertheless, as of 2019, there was no unified system of epidemiological monitoring of HIV infection. As a result, the number of first-time HIV cases detected by Rospotrebnadzor and the Ministry of Health may differ significantly. The data provided by the agencies in 2018 differed by 33.4% in overall growth rates across the country.^[194] In addition, epidemiological indicators depend on the method of statistical reporting. For example, after changing the method of recording the incidence of the disease in 2016 in Moscow, it decreased from 60.5 to 19.5 per 100 thousand people.^[195]

HIV spread prevention

Preventive measures to prevent HIV infection include comprehensive measures to reduce risk factors and inform the population. These include HIV antibody testing, ART, drug treatment for IDUs, prohibition of entry and deportation of HIV-positive foreigners, prevention of vertical transmission, sanitary regime in medical institutions, blood donation examinations, public counseling, preventive chemoprophylaxis.^[124]

By 2006, there were more than 100 AIDS prevention and control centers, 6 regional centers, and federal scientific-methodological and clinical centers functioning in Russia, as well as about a thousand Laboratory diagnostics laboratories, and more than 250 anonymous testing rooms.^[38] By 2017, there were 184 prevention centers and infectious disease hospitals, and more than 3,500 inpatient infectious disease units.^[92][106]

From 1987 to 2011, the government adopted a number of targeted national programs to combat HIV. These include the federal program "Prevention and Control of Social Diseases"; priority national project "Health"; project "Prevention, Diagnosis and Treatment of Tuberculosis and AIDS" and others. By 2008 there were over 400 prevention projects in Russia, of which 75 were targeting high-risk groups. The main areas of focus were: reducing discrimination in society, informing teachers, schoolchildren and young people about risk factors, prevention of vertical HIV transmission, advanced training of healthcare professionals.^[30]

The programs of the Ministry of Health and the country's government include HIV-related projects to reduce stigma and discrimination; increased coverage of testing and antiretroviral therapy; advanced training for medical professionals; and educational activities. Festivals, lectures, seminars, round tables, flash mobs, and public events are held annually as part of this direction. For example, the all-Russian "Stop HIV/AIDS" campaign, the International Conference on HIV/AIDS in Eastern Europe and Central Asia, the round table "Problems of limiting the rights of people living with HIV", beauty contests among girls with HIV, voluntary testing actions and others.^{[17][92][96][106]} To draw attention to successful practices, the annual contest "HIV/AIDS: To Know Is To Live" operates. It includes 10 nominations, and the works of the winners are combined into information catalogs. One of the main channels of education is the media. In addition to social advertising, federal channels broadcast television programs and documentaries. For example, a multi-part film about the everyday life of HIV-infected people "Struggle with Fate", a TV series about women with HIV "Fire". Despite increased knowledge about the ways of HIV spread, according to surveys in 2010 41% of respondents considered the problem insufficiently covered.^[196] Anton Krasovsky, Director of the AIDS Center Foundation, pointed out the lack of a specific plan of action and the lack of coordination among government bodies.^[106]

In the first decade of the 21st century, about 10 million migrants came to Russia every year. To reduce the spread of the virus among them, the authorities launched 41 HIV prevention programs, trained employees of the Federal Migration Service.^[196]

Hygienic education of young people is one of the main directions of HIV prevention. It involves outreach teams; offices of trusted doctors were organized at dermatological and venereal diseases dispensaries and AIDS centers; informational animated cartoons and online games were created; training manuals for children were prepared; training campaigns were conducted in military units. The work is carried out by AIDS prevention and control centers, drug and skin and venereal dispensaries, rehabilitation centers, women's counseling and perinatal centers, preventive medicine centers and other.^[124] Minors receive services in such organizations free of charge, and make up to 90% of hospital visitors.^[197]

While adolescents and young adults accounted for 24.7% of newly diagnosed HIV infections in 2000, this number has been reduced to 2.9% over nine years.^[30] Nevertheless, according to the results of surveys in 2009, only 37% of 15-24 year olds could correctly name the channels of transmission.^[196] Most experts believe that coverage of HIV prevention and sex education in educational institutions would help change the situation.^[124] But contraception education is recognized as amoral by the authorities, which makes a small percentage of schoolchildren aware of the risks and check their HIV status.^[50][106] By 2018, the practice of open lectures about HIV in Higher education institution has also been minimized.^[43][89]

Public activism

Since the mid-1990s, activists have regularly held open campaigns: "Safe sex – my choice" (1997), "A reasonable person is a reasonable choice" (1999), "This Little Thing Will Protect Both" (2000), "It's Important to Be Protected" (2001) and others. All of them provided information about the ways HIV spreads and prevention. But the issues of adaptation of carriers of the virus in society were not covered. Although Natalya Gashnikova, head of the laboratory of the Scientific Center of Virology "Vector," called socialization of patients an important step in the fight against the epidemic.^[17][185]

By the end of the 20th century, self-help groups for people living with HIV began to form. Activists provided social and psychological assistance to carriers. Thus, one of the first groups was Positive, organized in 1994 by Nikolai Nedzelsky in Moscow. Under his leadership, they launched the country's first HIV hotline, nationwide forums and face-to-face consultations with psychologists, as well as the informational portal AIDS.ru. Later, the Imena Foundation and the INFO-Plus educational center, the first HIV service organizations in the capital, were established on the basis of the group. Soon similar organizations began to appear in all regions of the country: NGOs "Yasen", "Steps", "Golos", "Candle", "Front AIDS", "Delo", "Keepers of the Rainbow", and "Community of People Living with HIV/AIDS" foundations. The actions were covered by journalists of BBC, CNN, NBC, which helped draw public attention to the problems of HIV-infected people. As the 21st century began, self-help groups began to appear all over the country. For example, in Cheboksary the first such organization was established in 2004.^[17]

In the first decades of the 21st century, the number of non-profit and charitable organizations working with HIV-positive people has grown. These include Red Tulips of Hope, E. VA, Sibalt, the "Russian Network of People Living with HIV/AIDS", the "AIDS Front in Russia", the NGO Transatlantic Partners Against AIDS, and others. At the same time, non-profit cooperation communities began to emerge, such as the "Silver Rose" support group for sex workers and their advocates.^{[48][92][198]} National projects to counter HIV involved public organizations: Medicine for You, Open Health Institute, Russian Health Care Foundation, Focus Media, Social Development and Information Center, AIDS-Info Link, and others. The Institute for Family Health Foundation and Sechenov University in Moscow participated in the prevention of vertical transmission.^[196]

International foundations

One of the first international humanitarian programs in Russia was "Prevention, Diagnosis and Treatment of Tuberculosis and AIDS". In 2003, the World Bank sponsored its launch, investing over $400 million. The main directions were: education, monitoring and evaluation of the epidemiological situation, advanced training of doctors and epidemiologists, procurement of equipment and consumables.^[48]

In 2004, the Global Fund to Fight HIV granted the Open Health Institute in Russia $88.74 million to launch 33 projects. In particular, the Global Unite project ("Globus") started in 10 regions of the country and the project "Development of a Treatment Strategy for the Russian Population Vulnerable to HIV/AIDS" started in 22 regions. All of them were implemented with assistance from the non-profit foundations "Open Health Institute", "FOCUS Media", "AIDS Infoshare", "Russian Health Care", "AIDS Foundation East-West", and "Center for Social Development and Information".^{[196][198][199]} The Global Fund has repeatedly extended funding and ended its work in Russia only in 2018.^[106][200]

In addition, by 2008, there were several other foundations and initiatives active in Russia:^[196]

• UNAIDS Secretariat monitors the implementation of international obligations, provides annual national consultations, technical assistance in strategic planning, etc. Within the framework of cooperation of the organization with the All-Russian Public Association of People Living with HIV and the All-Russian Harm Reduction Network, a non-profit partnership to support public health programs "ESVERO" has been operating since 2010.
• World Health Organization conducts epidemiological surveillance and operational research, cross-national interagency forums, implementation and monitoring compliance with international protocols.
• UNICEF works with young people and families, development of youth clinics and prevention of vertical transmission of HIV. As of 2009, 117 services for youth health and HIV prevention were functioning in 28 regions; in eight of the most problematic regions programs for the integration of children with HIV into the general education system were conducted.
• United Nations Population Fund (UNFPA) evaluated the stigmatization of HIV-positive people, supported national programs. As part of the collaboration, the all-Russian "Y-PEER" network was established to promote healthy lifestyles among adolescents on the basis of the peer-to-peer principle.
• UNESCO is engaged in HIV prevention among young people, projects to reduce discrimination, work with local media.
• United Nations Office on Drugs and Crime (UNODC) is conducting medico-social support to IDUs, provides treatment and preventive care.
• International Labour Organization (ILO) runs information campaigns in labor collectives, organized together with the Ministry of Health, Federation of Independent Trade Unions of Russia, Russian Union of Industrialists and Entrepreneurs/Union of Industrialists and Entrepreneurs]].
• United Nations Development Program (UNDP) supports the nongovernmental sector.
• United Nations High Commissioner for Refugees (UNHCR) distributes brochures, booklets and posters in native languages for refugees.
• U.S. Agency for International Development (USAID) is involved in the prevention and treatment of HIV infection in drug treatment facilities.

Since 2012, the Russian government has been pursuing a policy aimed at reducing foreign interference in the life of the country. UNAIDS, the main source of funding for HIV programs, has curtailed its activities in the country. Russian non-profit organizations funded by foreign foundations began to be recognized as "foreign agents".^[89] At the same time, NGO leaders complained about difficulties in obtaining government grants.^[44][45]