Denialists have been gaining attention in country where treatment rates are already low
Russia is proposing a ban on so-called HIV/Aids denialism as the country struggles to manage one of the largest epidemics in eastern Europe or central Asia.
Russia’s ministry of health this week put forward legislation that would make it illegal to spread false information about HIV, targeting those who reject its existence or question the link between HIV and Aids and doctors’ ability to treat the virus.
Tens of thousands of Russians are subscribed to online forums dedicated to rejecting mainstream scientific knowledge about HIV. Reports about “HIV dissidents” who have recently died of complications or refused to treat their children for the virus have made national headlines.
“The problem with the denial of the existence of HIV is taking on a massive character and, with the spread of HIV in Russia, makes it dangerous for society,” the health ministry wrote in an introductory letter to the new legislation, which was proposed earlier this week. Russian lawmakers have signalled they will support the draft law.
Up to 1.2 million Russians have HIV and an additional 100,000 cases were recorded in 2018, according to official estimates. Only about a third of those with the virus are receiving antiretroviral therapy (ARTs), a series of drugs used to halt its spread.
Key reasons for the low treatment numbers include an overtaxed medical system and a lack of outreach by the government to those with HIV. In 2018, a report by the International Treatment Preparedness Coalition showed that 35 of Russia’s 85 regions, where more than half the population lives, declined to purchase ARTs to support a national treatment programme. Discrimination in Russia against LGBT+ people, who are among those at higher risk of contracting the virus, is also considered a reason why some with the virus do not seek treatment.
While HIV denialism remains a fringe movement, it has attracted significant public attention in recent months. In April, two women in Siberia who had refused treatment were reported to have died. One, a well-known activist from the Irkutsk region, was reported to have refused treatment for her child, who was also HIV positive. Another woman in Irkutsk was convicted of negligence for refusing treatment for her four-month-old daughter, who died of complications from Aids in 2018.
The movement is well-represented on social media. A popular group on Vkontakte, a Russian social network, called “HIV Aids is the greatest hoax of the XX century” has more than 16,000 followers. The page prominently links to House of Numbers, a 2009 documentary film about HIV/Aids by filmmaker Brent Leung that the New York Times called “a weaselly support pamphlet for Aids denialists”.
Russian NGOs have distributed pamphlets advising healthcare providers and social workers on how to deal with HIV denialists. A 2017 brochure listed those at risk of joining the movement as: those recently diagnosed with HIV, pregnant women, foster parents for HIV-positive children and couples where one partner was HIV positive and the other was not.
Russia has said it wants to reach 90% treatment levels by 2020, a benchmark it seems unlikely to achieve.
Some civil society advocates working in HIV prevention were sceptical about how effective the law would be in boosting the number of Russians taking antiretroviral drugs.
The main problem “isn’t about people refusing treatment, but that there is no informational work among the most vulnerable people, among drugs users”, said Anya Sarang, the head of the Andrey Rylkov Foundation, a Moscow-based NGO which advocates for humane drug policies. “They are not given any support, there are no programmes for methadone replacement therapy, so it’s hard for people to stabilise their lives and begin ART treatment.”
By Andrew Roth