The Russian Federation
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. At the beginning of 2022 1.137 million Russians were infected out of 144 million total population. Nevertheless most experts believe that the real number of HIV-positive people is significantly higher as a noticeable share has not yet been identified.
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. By 2021 government discrimination and police harassment of vulnerable populations hampered HIV prevention efforts. UNAIDS acknowledged that the new “gay propaganda law” would undermine the Russian authorities’ goal of eradicating AIDS by 2030 and called for its abolition.
In addition to the stigmatization towards people living with HIV human rights activists and volunteers are concerned about the lack of funding.
The position of HIV-infected people worsened after the Russia invasion of Ukraine and the imposition of international 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.
Of the total number infected a study by the British charity NAM estimated that in 2022 only 45% were receiving antiretroviral therapy. And in February 2023 the media reported that in some colonies prisoners began to be denied life-saving therapy. By December 2023 the HIV infection levels had reached ‘epidemic proportions’ in 19 regions 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.
(Sources: AVERT and UNAIDS)
HIV and Aids in Russia
Ulla Pape has been teaching at the Radbout University in Nijmegen for about a year. It is here that we meet in her somewhat spartanly furnished study. Dr. Pape studied Slavic Languages and Culture and Political Science at Münster, and graduated in 2002. She completed an MA in Humanitarian Action at Groningen University in 2006 and then wrote her thesis. She speaks seven languages, including fluent Russian and Polish, and has a curriculum vita that suggests that she is a woman in the twilight of her career. But Dr. Pape is 41 and according to herself ‘has only just started’.
The reason for our conversation is her PhD thesis: ‘The politics of HIV/Aids in Russia’ which she completed in 2012. She worked on her thesis for 5 years and did the necessary fieldwork in four cities in Russia. In her thesis she examines the role of NGOs in the fight against HIV and AIDS in Russia and their influence on Russian politics.
Your studies and work focus mostly on Eastern Europe. How did this interest develop?
It started in my teenage years. At my high school I could choose to learn Russian. Part of the curriculum involved exchanges with schools in St. Petersburg. Those first trips to Russia, in 1991 and 1993, made a huge impression on me. I met young people who lived very different lives than I did. It was a turbulent time when great changes were taking place. 1991 was the last year of the former Soviet Union.
Did HIV and AIDS already play a role in the early 90s in Russia?
Hmm … a little. On a small scale. But I didn’t notice it. I was not interested. I had indeed heard about HIV and AIDS in Germany, but I hadn’t come into contact with it.
What struck me during that first visit to Russia was the drug use amongst young people. There were no warnings from the government or any degree of information about drug use. Youngsters used everything without realizing what dangers were involved. I remember hearing about a wild drug party in Minsk, where I fortunately was not present, which was raided by the police and everyone was arrested … About the link between drug use and possible HIV infections you heard nothing. HIV and AIDS at that time were a little known phenomena amongst Russian youth.
When did the HIV and AIDS epidemic began to play a bigger role in Russia?
The development of the epidemic in the 90s was relatively modest. You can compare it to the progress of the epidemic in the West in the 80s. In the beginning there were isolated cases, but after ten years one saw a sharp increase in numbers in a short time. In Russia the tipping point was around the year 2000. Then HIV came into the picture for the general public. There is a poster from that period, which stated that if YOU had AIDS, then you died. Two things shocked me: that a death sentence was pronounced on that poster and that it was about YOU.
HIV and AIDS in Russia are always something from someone else. It never concerns you.
A personal decision gave HIV and AIDS a central role in her work. “I wanted to live with my partner and moved from Münster to Groningen. I also wanted a bigger place in my work for my community involvement. Up until the move I worked as a scientist in Marburg and also studied the history of Eastern Europe. In Groningen I started a study entitled ‘ Humanitarian Action ‘. This was how HIV and AIDS and other humanitarian issues emerged. ”
Why is the stigma about HIV in Russia so big?
Because it is widely supported. Not only by the government but also by the population. Both are very negative towards people with HIV. HIV is associated with behavior that is disapproved of. Homosexuality, drug use, prostitution are all strongly condemned. People do not want to have anything to do with it. The general attitude is that if gay men and drug users are infected with HIV, then that is their own fault.
The fear and loathing of HIV and AIDS is perhaps normal. It was a new and serious disease. In the early years of the epidemic in the West, there was a lot of fear and misunderstanding too. But in the West there were processes set in motion and one learned how to deal with it. That never happened in Russia.
This does not mean the situation is the same everywhere. Russia is a big country. The regional differences are huge. I worked with various organisations in the Caucasus between 2005 and 2012, including Amnesty International. Although it is a part of Russia, the North Caucasus has a different culture. The area is poor and life can be extreme. Drug use is high which in turn leads to high HIV infection rates. But HIV and AIDS are not spoken of. There are rumors, please note: rumors, that people with HIV are not safe. If a pregnant women is found to be HIV positive it is assumed by the community that she has cheated on her husband. The chances are real that the community will exclude her. The regime is very repressive.
Because of the wide regional disparities it is common for people with HIV to move to another city, because they expect to get better medical treatment or seeing doctors there who are more sympathetic to their condition.
In 2005 you started to write your thesis about HIV and AIDS in Russia…
Yes! At that time there was a lot of discussion about HIV and AIDS prevention in Russia. It was clear that there was a big problem and it seemed that the Russian government seriously wanted to do something about it. Civil society organizations and international NGOs played an important role in that process. It was hoped then that this was the opportunity to address it properly.
During that time Russia wanted to play a stronger role internationally and to be seen as a fully-fledged partner. This involved donating money via the G8 to the Global Fund for the fight against HIV and AIDS. Since 2004 this fund has financed all kinds of new HIV and AIDS programs. Russia accepted this initiative. International tension about Georgia and later the Ukraine have unfortunately contributed to the fact that relations with countries abroad have been severely disrupted. When the Global Fund stopped their funding between 2010 and 2012 the intention was that Russia would continue this funding, Russia has not done so….
The sad part is that one gets the impression that for the Russian government the welfare of its own population does not have a high priority.
Can you paint a picture of what it is like for the HIV-infected man or woman to live in Russia anno 2015?
Yes … hmm. First of all, we do not know how many people we are talking about. No more official statistics have been published in recent years. We estimate that the number of people living with HIV in Russia is somewhere between a million and a million and a half. That’s a lot for a population of approximately 140 million.
The number of people living with HIV is growing. Among the young generation of Russians, the percentage of registered HIV infections is already more than one percent. This means that Russia is already on the verge of an epidemic. The AIDS politics in Russia is not good enough, especially in the area of prevention among key risk groups of the population. There are HIV and AIDS clinics in Russia, but they are separate from regular healthcare, which only increases the stigma. As soon as you walk into a HIV clinic everyone knows why you are there.
Different with the West is that we trust that our physicians are on our side. That they are well qualified and will treat us in the best way they can. Russian patients do not have that same confidence in their physicians.
There are also problems with the availability of medicines. Sometimes there is only one treatment available. Regardless of the possible side effects or efficacy this is then prescribed to everyone. All this makes life very difficult for people with HIV. Unlike in the West, there is nowhere or no one you can complain to if things go wrong. These bodies do not exist. And there is always the danger that if you do complain, your family, your friends and your boss will discover your infection. The fear of being ostracized by your social circle, being evicted or losing your job, is very real.
Are there developments we can draw hope from?
I am confident that things will change … Russia is in transition, a country in motion. What gives hope is how everywhere there are people who find the courage and strength to come together to try to improve things. I met a youth organization in Tomsk, in Siberia, who got together to fight the epidemic. Because their activities fell under the rubric of a youth club they were able to do more than if they had presented themselves purely as an HIV and AIDS organization. For politicians and policy makers HIV and AIDS organizations are as contaminated as the men and women who are infected with HIV themselves.
Fortunately there are brave men and women in every sub culture that are dealing with the epidemic. They are informing and mobilizing their own supporters. Those small operating groups often have limited resources, but are very important. People support each other, share information; you can sometimes exchange your medication, and actions are designed to influence public opinion.
Public demonstrations are, however, other than we might think, also controversial within these organizations. Shouting on the street that you have HIV will work against you rather than in your favor. It may be more effective for you to connect with other groups to advocate for a better health care for all.
Can outside influence help to improve the position of people with HIV?
Of course! Go to Russia. This way you will be supporting the people with HIV in a very direct way. People are heard, seen. Through multinational projects such as ATLAS2018 the HIV community gets a platform to show themselves. The fact that the Russian story will be heard worldwide in the next few years and will be prominent at the international AIDS Conference in 2018… The value of this cannot be underestimated!
International contacts also show that things can be organised in a better way. Every minority needs role models. One event in Russia that had a huge impact on the HIV community was the Miss HIV Positive competition 2007. The winner was for many years the poster girl for the community. She ended once and for all the prejudices that all those infected with HIV are drug users and look bad.
What is the best way to appeal to the Russian government about their policy?
The Russian government is sensitive about its image. It sees Russia as a large and important player on the world stage. If you show the Russian government that they are doing worse in terms of HIV and AIDS prevention than many smaller and poorer countries, you touch a nerve.
Do you see a role for yourself in the coming years?
I ‘m certainly not finished with this topic. I’m now working on two projects with the key questions: How do people organize themselves to solve societal problems, and what determines the force field between government and citizens? I believe that the best chance of progress lie with civil society initiatives. Men and women with HIV who decide to come together, organize themselves and set to work together. That can make the difference.