Yana Kolpakova from Vladivostok has been living with her AIDS disease for a long time and talks about it openly. She is sure that every person with such a diagnosis in Russia has faced discrimination on the part of doctors. “One “wise“ a nurse, for example, advised people like me to be sterilized. And one doctor called me a prostitute and started yelling that since I was undoubtedly taking drugs, the anesthetic for my necessary operation would not catch me, Kolpakova says.
Stefania Hridina was adopted in the Ukrainian city of Nikopol when she was 11 years old – since then he knows he has AIDS. She was told that she was probably infected by her birth mother, whom the girl did not know. “My new father treated my illness normally, but my mother showed a good attitude only in front of him – otherwise, he gave me separate utensils and everything was separate in general", Hridina remembers. At the age of 18, she appeared before a medical commission in the Ukrainian city of Dnipro, where one of the doctors told her: “Spinozists have no place here”. Stefania is now 23 years old, since then she has not consulted any more doctors.
Valentina Mankieva from Almaty recently went to see a neurologist and took her 10-year-old daughter with her. “She knows about my illness, and when I told the doctor I had AIDS, he asked – and isn't the child infected too? I have lived with the disease for 27 years, but still cannot get used to the widespread ignorance. Of course, I explained to him that I was being treated and that people with AIDS can also have healthy children.“ According to Mankieva, the doctor examined her from a distance and used gloves.
AIDS-related mortality is rising
In Eastern Europe and Central Asia, 93% of new cases of HIV infection are in Russia, Ukraine, Uzbekistan and Kazakhstan, according to data from the United Nations Program on HIV/AIDS (UNAIDS). In 2023, the number of new diseases increased by 20 percent compared to 2010, and deaths – with 34 percent.
„There is a high level of stigmatization and discrimination in the region, and this complicates access to medical care,” Mahesh Mahalingam from UNAIDS told DV. According to him, the problem often lies in the fact that people either do not know about their disease at all, or learn about it too late, or stop treatment. Mahalingam elaborates: “People feel they can be shamed because of their status, and that complicates access to medicine. You wouldn't go for help where you are not respected and where you can be stigmatized.
The region has the most people with HIV in Russia – over 1.1 million according to official figures. Health Minister Mihail Murashko claims that the incidence has decreased by 40 percent since 2016 and is now at a record low level. However, according to infectious disease expert Vadim Pokrovsky, the ministry's data reflect only the positive side. “In the last ten years, the number of sick Russians has grown catastrophically: in the period 2015-2022. more than 600,000 new cases of HIV infection were registered, in 2023 the disease was diagnosed among another 50,000 people, and this number is expected to be this year as well. "The number of deaths in 2023 has increased by five percent compared to the previous year," he says. According to Pokrovski, the problem is not decreasing, but increasing, regardless of the improvement of some individual indicators.
Most Russians with AIDS do not talk about their disease
Activist on the problems of people infected with AIDS Maria Godlevskaya from St. Petersburg says that after the diagnosis, many people no longer want to go to the doctor. “There are not a few who say that the first months after the diagnosis were a real hell for them. They were subjected to real “interrogation” from different doctors all for the same – where did they get infected from.“
According to Godlevskaya, people are afraid that the information can reach the employer, they are afraid to go to the doctor when they live in a small town – because acquaintances can find out about their illness. And it is one of the most stigmatized – in Russia, 81% hide their diagnosis from others, studies show. Doctors' offices often refuse examination of people with HIV, as well as any medical care, says the activist.
Infectious disease specialist from Nizhny Novgorod Olesya Kurakina confirms this and points out that it is for these reasons that people postpone their visit to the doctor and try to find doctors who will not look askance at them.
Do doctors not know enough about AIDS?
Kurakina says that AIDS is an almost unknown disease for medical education in Russia. “During my studies, we were told very little about this infection, although I studied infectious diseases. There was very little general information about this in the other specialties as well.“
„In big cities, doctors have more opportunities for training, for information. And doctors in small towns simply don't have opportunities to learn and they don't know the latest trends," Godlevskaya points out in turn.
Kurakina's opinion is that the situation is gradually improving after all. “ Adequate doctors are becoming more and more, and this makes patients happy that they can also come across normal reactions.“ Yana Kolpakova from Vladivostok also notes that she met in Russia “wonderful doctors who try very hard”.