Russia’s Ministry of Health is unhappy with the country’s inclusion in the top five countries in terms of the spread of HIV. But the real issues in the fight against HIV infection are being lost in the battle over statistics. The BBC’s Russian Service investigated what the statistics really say, and what problems with HIV in Russia remain unresolved.
On December 7, Kommersant published an article stating that Russia will be the fifth country in the world with the fastest rate of HIV spread in 2021. Russia will account for 3.9% of the 1.5 million new infections in 2021 – this conclusion is based on data from the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the European Centre for Disease Prevention and Control (ECDC). Kommersant’s note was picked up by many Russian media – with the headline that it was the UN that included Russia in the top 5 countries for the spread rate of HIV. But this is not true. The data cited by Kommersant was published a week earlier on the German portal Statista, which collects and aggregates various statistical and sociological data.
According to Statista’s infographic, they identified the top 10 countries with HIV prevalence based on aggregated estimates from UNAIDS, ECDC and WHO. Notably, UNAIDS reports do not assess the situation by country, but by geographic region. However, the loud headlines claiming that the rate of HIV spread in Russia is roughly the same as in African countries caused dissatisfaction with the Russian Ministry of Health. The ministry said this “does not correspond to reality and is another propaganda provocation” against Russia.
In its statement, the Ministry of Health emphasizes that Russia has one of the highest rates of HIV testing coverage in the world, and the incidence of the disease is steadily decreasing each year. According to the Ministry of Health statistics, as of 2021, there are about 851,000 people living with HIV in Russia, and the number of new cases in 2021 was almost 59,000 people. However, if you look carefully at the statistics, it becomes clear that the data from Statista and international organizations fighting against HIV do not contradict the data from the Russian Ministry of Health, says Alexey Lakhov from the NGO delegation to the UNAIDS Coordinating Committee. The figure of 3.9% of 1.5 million infected in 2021 is almost the same as the 59 thousand people reported by the Russian authorities.
“I think that such a negative reaction was perhaps caused by the wording regarding the top five countries in terms of the rate of spread of HIV infection. Perhaps the Ministry of Health thought that the media did not want to see the wood for the trees, that in Russia not everything is bad, but there are certain successes,” Lakhov commented on the reaction of the Ministry of Health. According to him, no one among international organizations denies that Russia has one of the largest HIV testing coverage, they emphasize the importance of a separate state strategy to combat HIV, which not many countries have”.
Disputes over HIV statistics also arise within Russia. In late November, the Ministry of Health and Rospotrebnadzor clashed over how many people in the country are infected with HIV, because they use different methods of data collection. Academician of the Russian Academy of Sciences, Head of the Department of Epidemiology and Prevention of AIDS at the Central Research Institute of Epidemiology of Rospotrebnadzor Vadim Pokrovsky stated that in Russia there are 1.5 million people living with HIV. According to him, this number includes over 1.1 million people with a confirmed diagnosis and, according to estimates, another 400 thousand people who are unaware of their positive HIV status. These figures were immediately rejected by the Ministry of Health, which stated that in reality the number of infected people in Russia is significantly lower – 851,000 people. Rospotrebnadzor’s calculations are “unverifiable” and of an “estimated nature,” said Alexei Mazus, the Health Ministry’s chief specialist on HIV infection.
The estimates of the number of Russians living with HIV provided by the Ministry of Health and Rospotrebnadzor have almost always differed throughout the observation period since 1987, according to “Kommersant”. Both institutions claim that it is their figures that should be used to draw conclusions about the real epidemiological situation in the country. As Alexei Lakhov explains, there are financial and bureaucratic reasons for discrepancies in statistics and disputes over which agency is more accurate. The more people know their HIV status, the more likely they are to receive antiretroviral therapy, and the more budget expenditures increase, he points out.
“The Ministry of Health considers it important that the allocation of therapy to patients included in the federal registries should be gradual and not explosive,” says Lakhov. “In essence, [the Health Ministry is saying]: if we register people smoothly and assign therapy gradually, we can plan our expenses, and there is no need to panic here. Because if we actually have one and a half million people, and not 850 thousand, it means that somewhere [the Ministry of Health] is not doing enough, not allocating enough money, and not meeting the indicators of the state strategy to combat HIV in terms of the number of people receiving therapy, and as a result may face consequences from higher authorities.”
In 2018, academician Pokrovsky stated that about 100 billion rubles should be allocated for controlling the spread of HIV in Russia. According to him, only 50 billion rubles are needed for the annual purchase of medicines, but only 30 billion rubles are allocated. Almost the entire budget for fighting the disease goes specifically to buying drugs, while only a small amount is allocated for prevention, says Alexey Lakhov. He recalls a situation when the Ministry of Health held a competition to improve HIV prevention and allocated five million rubles to four organizations. The same situation occurs in the regions: according to Lakhov, the amount of regional grants and subsidies allocated to HIV prevention programs for key populations rarely exceeds 2.5 million rubles per year.
Despite the reassuring statement from the Ministry of Health, there is a problem with HIV infection in Russia, it is really acute, and we actually do not know its real scale, says Lakhov. The Ministry of Health reports an annual decline in the rate of HIV infection, but Lakhov suggests looking at the absolute numbers. “Last year – 58 thousand cases, the year before – 70 thousand, another year – 80 thousand; these are colossal numbers,” he points out. According to Lakhov, the problem is that the Ministry of Health does not want to talk about the so-called key population groups where prevention work is weak. These groups include people involved in sex work, drug users, people in prisons, transgender people, gays and other men who have sex with men.
Another example: in St. Petersburg, he said, sex workers are not even included in the interdepartmental HIV prevention program for key populations – even though sex workers are included in the government’s strategy to combat the infection. “If we go down to the level of regional programs or look at how many people from key populations have been tested for HIV, it turns out to be less than 10%. It turns out that the Ministry of Health is mainly testing the general population, and people from key populations are likely to be included in these statistics in much smaller numbers. And this does not allow us to see the full picture of HIV infection and its spread,” Lakhov concludes.
According to him, the Ministry of Health and the authorities are constrained by bureaucratic frameworks and a “government ideology” in this matter, which is why they try to reduce the intensity of public discussion. “That is why in their refuting statements they say: look, we also have successes. But nobody denies that there are achievements. We’re just trying to say, let’s not forget the whole picture, that we have key population groups that need to be worked with,” Lakhov says.
Another problem, according to Lakhov, is the reluctance of the state to work with civil society, which could bring problems to the attention of the authorities and help solve them. Some NGOs working on HIV prevention have been declared “foreign agents” for receiving funds from abroad. Sam Lakhov is worried that the Eurasian Harm Reduction Association – the organization he represents at UNAIDS – will be placed on the list of undesirable organizations in Russia, which means they will no longer be able to work there.