Alongside the HIV epidemic in Russia, an equally insidious epidemic has taken root: denial of the virus. While the government has tried to tackle the virus, some have decided to take things in their own hands. On World AIDS Day (1 December), we explore the story of a woman who is fighting against HIV trolls online
The first time I saw Julia Vereschagina’s name was in an HIV denier group on VKontakte (VK). It struck me that in a group which has unanimously acknowledged that HIV is a hoax, someone would try to publicly challenge the standing theory that the virus does not exist. Comments following hers are often angry and derisive. Her mission seems like a lost cause.
Russia is currently fighting one of the fastest-growing epidemic of HIV/AIDS in the world. More than 1 out of every 100 people are diagnosed HIV-positives, and these figures are even higher in cities like Yekaterinburg where until a couple of years ago, HIV deniers held proper conferences to discuss the non-existence of the virus.
Julia went from denying the virus for four years, to finally recognising its existence. She then made it her mission to persuade as many people as possible to leave the HIV denier group, focusing especially on pregnant mothers.
The easy way out
Julia was diagnosed positive after an appendectomy when she was still living in her hometown in Siberia. With the diagnosis came the stigma attached to it. Her own parents gave her separate dishes and sheets and started accusing her of being a junkie or a prostitute.
Feeling ashamed, she went online to look for more information and encountered the HIV denier community. Here, people would minimise the gravity of the potentially fatal medical condition.
Afraid of losing her job if outed as HIV-positive, she preferred relying on a comfortable lie. Her denial lasted four years where moments of panic and fear were reassured by the rhetoric that her virus was simply a lie.
I stopped looking for more information because I was afraid to stop believing in them [the lie the community perpetuates]. I grabbed the community as something that was truthful and kept holding.
After moving to St Petersburg in 2013, she was able to take an anonymous test which forced her to reckon with reality. Through her doctor, she was put in contact with Svecha, a charity foundation that used to organise weekly meetings with HIV-positives.
“It was very important to see people who received the treatment and didn’t die from it as the deniers say,” Julia adds.
Persuaded by deniers that antiretroviral treatment is a lethal poison, she was more afraid of the treatment than of the diagnosis itself.
“When I found out that it was not as it is portrayed there, that you can live with it, everything changed for me,” she says.
From denier to activist
In 2014, she decided that more needed to be done for the HIV denier community. Moved by children who have died because of their mothers’ disbelief, she decided to challenge HIV denier groups on VK and persuade them before it’s too late.
“I’ve got a lot of insults,” she says with a smile. “They were accusing me of being paid by the AIDS mafia from the US, that I was HIV-negative myself and that I was driven by money in convincing them of the existence of the virus. They didn’t believe that I just wanted to help them.”
“Our whole group of volunteers is constantly picked on by deniers with our photos shared with tags saying that we are trolls and that we work for the HIV mafia.”
After two years of action, Julia has seen many lives almost destroyed by their denial of reality.
“During the war in Ukraine, there was a very active guy in the denier community whose health suddenly started deteriorating. When he eventually decided to take the treatment, it was simply not available and that’s when we intervened. We called doctors and gathered them to provide him with treatment before it was too late. It was one of the victories we are most proud of.”
The shocker came when the man, who was himself the founder of the HIV denier group, confronted the group with the truth and was shot down with anger by the former followers.
“Many women get diagnosed only when they get pregnant because of the mandatory test,” explains Julia. Many of them end up in an extreme form of denial. “I know of a lot of cases where mothers would administer treatment to their kids only when it is too late and they end up blaming their death on the treatment itself.”
Those mothers will have to carry the weight of guilt for the rest of their lives as their child died because of their indecisiveness.
By checking the group everyday, Julia keeps an eye on the deteriorating health of both mothers and children who publicly share their information and worries in the HIV denial groups on social media.
“Sometimes I read statuses saying that their kids, who have been diagnosed HIV positive, have diarrhea or are feeling sick. And the mothers still wouldn’t take them to the doctors because of their distrust of the treatment.”
Whenever these mothers share their stories, many respond to their posts and convince them to go on resisting treatment. It is these women whom Julia approaches first, often providing them with contacts of other mothers who did take the treatment. “It is important to let them talk to someone who has been through therapy. Side effects do happen. I had my treatment changed twice because of side effects. At first it might seem difficult, but there is always a choice and there is always a suitable treatment.”
Out of the community
Because of her openness in social media groups, deniers often get in touch with her privately.
“Publicly they are still in denial, but privately they start asking me questions.” Very often they show concern over whether Julia would post their conversation publicly, as well as fear of being outed to the community and losing its support as a consequence.
“The deniers see themselves as activists but if they start having doubts and drift away from the group, they are in a no-man’s land where they would have no community, no friends and support. They lose everything.”
Recently, in many cities like Yekaterinburg, the government and local health authorities have publicly acknowledged the gravity of the situation.
“It is interesting to see how the media has shifted its coverage. From discussions with deniers on state TV, the discussion now is more focused on how the problem of HIV in Russia can be tackled rather than questioning its existence,” concludes Julia.