Yana Kolpakova from Vladivostok, Russia, has been living with HIVfor a long time and said she thinks anyone in Russia with HIV has likely been discriminated against by doctors at some point.
“One nurse advised people like me to get sterilized,” Kolpakova told DW. “When I was admitted to hospital for a ruptured fallopian tube, I was called a whore. I was accused of taking drugs, which is why they claimed anesthesia wouldn’t work for me.”
Stefania Hrydina was adopted in Nikopol, Ukraine, at the age of 11. That was when she learned she had HIV. She was told she was probably infected by her biological mother, whom she does not know.
“My adoptive father behaved normally towards me, but my mother gave me my own dishes, keeping everything separate for me,” Hrydina said.
During a medical examination in the city of Dnipro at the age of 18, she was told that people with HIV had no place there. For Hrydina, who is now 23, this was the last time she saw a doctor in Ukraine.
Valentina Mankiyeva from Almaty, Kazakhstan, said she was asked by a neurologist whether her 10-year-old daughter, who was present at the time and knows her mother’s HIV status, also contracted the virus.
“I have been living with HIV for 27 years and I simply cannot get used to this widespread ignorance,” Mankiyeva told DW. “So, of course I explained to him that people with HIV can have healthy children.” The doctor then proceeded to examine her back at a careful distance, wearing gloves.
Infections, deaths are up
According to the Joint United Nations Program on HIV/AIDS (UNAIDS), Russia, Ukraine, Uzbekistan and Kazakhstan account for 93% of all new HIV cases in Eastern Europe and Central Asia. The region is the only one in the world where both new HIV infections and HIV-related deaths are on the rise, according to the new UNAIDS report, which was published on December 1, World AIDS Day. HIV infections rose by 20% in 2023 compared to 2010, while HIV-related deaths increased by 3%, the report finds.
“There is significant stigmatization and discrimination in the region, which complicates access to health care,” UNAIDS Chief of Staff Mahesh Mahalingam told DW. The problem is often that people either don’t know their HIV status, find out too late, or stop getting treatment. “People feel they should be ashamed of their HIV status, which makes their health care treatment more difficult.”
Most Russians keep HIV infection secret
Most people with HIV in this region live in Russia, with over 1.1 million confirmed to be HIV-positive, according to Russian authorities. Yet the incidence of HIV has fallen by almost 40% since 2016 and is now at an all-time low, said Russian Health Minister Mikhail Murashko.
These figures only, however, reflect the positive side, according to Vadim Pokrovsky of the Russian Academy of Sciences.
“Over the past 10 years, the number of people falling ill has risen catastrophically,” Pokrovsky told DW. “The Russian Ministry of Health reported more than 600,000 new HIV infections to the World Health Organization between 2015 and 2022. In 2023, there were another 50,000 infections, which is also expected for 2024. HIV deaths increased by 5% in 2023 compared to the previous year.”
There are problems at various levels from getting diagnosed to receiving treatment, said Maria Godlevskaya, an HIV activist from St. Petersburg.
“Even those who have made a conscious decision to take an HIV test and got a positive result often stop seeing a doctor,” she told DW. “Many say that the first few months after getting diagosed were hell for them. They were first hounded by the infectiologist and then the epidemiologist, to find out how they had become infected.”
She said HIV-positive people fear that this information could be passed on to their employers or spouses. She also said they avoid small-town doctors, where word gets out quickly. Doctors also often refuse to examine and treat people infected with HIV, the activist added.
Olesja Kurakina, an infectiologist from Nizhny Novgorod, Russia, who runs a medical blog, has observed similar issues, “HIV-positive patients are often denied help and referred to AIDS centers.” They are told that allegedly, they can only receive medical care at such centers, which often lack specialists. “People with HIV put off seeing a doctor until the last minute, and only look for doctors who won’t judge them.”
Doctors ill-informed about HIV?
Kurakina criticized the lack of education about HIV in Russia, saying, “Even during my studies, we were told very little about it.”
Godlevskaya pointed out that doctors in big cities have more opportunities to participate in further medical training. Small-town doctors, on the other hand, do not have these opportunities and are rarely up-to-date. There is a debate, for example, over whether an “undetectable” HIV viral load means the virus is “non-contagious.” The question is whether HIV-positive people who are undergoing treatment and have no detectable viral load can transmit the virus through sexual contact.
But things are gradually changing, according to Kurakina, who said there are larger numbers of competent doctors who treat HIV patients normally.
“These days, patients are writing to me, saying they weren’t judged when they visited the doctor,” Kurakina told DW.
Yana Kolpakova from Vladivostok had a similarly positive experience. She, too, has met “wonderful” qualified doctors in Russia who made an effort to treat her despite their heavy workload.
Russia must do more to tackle HIV
Russia must step up the fight against HIV, UNAIDS said. The organization added that Ukraine, which was invaded by Russia, has already done a lot and continues to do much in its fight against HIV. Experts cannot, however, say how Russia’s invasion will affect Ukrainian efforts.
Stefania Hrydina moved from Ukraine to Germany 2022. She completed vocational training to become an ecologist and now lives in Berlin. Hrydina says she is no longer afraid to see a doctor.
Valentina Mankiyeva, meanwhile, heads the Central Asian Women’s Network (AMAL), helping HIV-positive people deal with the fear of facing rejection by society. After dealing with the ignorant neurologist in Kazakhstan, Mankiyeva spoke to the head of the clinic, offering to hold an HIV seminar for doctors. Management accepted her offer.
This article was translated from German.
