Registering could mean rampant discrimination, but not registering could mean sacrificing treatment.
HIV has reached epidemic proportions in Russia. Over 1 million people are HIV+ in the country, with 100,000 new infections in 2016 alone, and rising at a rate of 15 percent annually, according to a report by the European Center for Disease Control (ECDC). Even still, there are few signs that the government will commit resources to stem the acceleration of the virus.
Now, in a new tactic to quell the disease, the Russian Health Ministry has announced a new policy: a national registry of HIV patients.
While the government claims that the registry is not mandatory, it’s the only way that patients could receive life-saving medication. All doctors and treatment centers would only receive medication based on the names of the patients listed. "Any individual diagnosed with HIV should be interested in being included in this register since he or she will receive medicine on this basis," the Russian Health Ministry Spokesman Oleg Salagai told TASS, a Russian News Agency.
While the idea of an HIV registry might seem autocratic, most countries already have some version of one, including the US, which has kept track of HIV+ people since 1981. Many Western European countries use an encoded process, such as a string of numbers or letters, rather than patients’ names for privacy concerns, but the US uses a name-based register for accuracy. The Centers for Disease Control (CDC) has pressed states to drop name-based registers, but a few states, such as Maryland and California, have rejected their policy. Most research on name-based registers show that they can lead to a 22 to 63 percent decline in HIV testing due to a patient’s concern for privacy. The only reason that this decline hasn’t been shown in America is because most Americans are unaware that these registers exist.
Russians, on the other hand, are very aware that this registry exists and are growing increasingly concerned. Mandatory lists of stigmatized vulnerable populations are concerning if the list falls into the wrong hands. Activists worry that the registry will be used to further discriminate and crack down on LGBTQ communities, drug users, and prostitutes.
"At hospitals or even with close friends, you never disclose your status because your whole life can be ruined," said Maxim Malyshev, who is HIV+ and works for one of the few NGOs that distributes clean needles. "There is too much stigma and discrimination not just on the personal level, but also in the legal sphere, such as the ban that prevents HIV+ parents from adopting children."
In other countries where there’s severe discrimination against HIV+ people and individual privacy is not valued, name-based registers can be used for coercion. Last year, a man hacked into one Chinese register and then blackmailed over 500 HIV+ people, threatening to disclose their status to the public and employers unless he was paid sums upwards of $10,000. In China, an HIV+ diagnosis can lead to the loss of your job, refusal of medical treatment, or even exile from your town. This past year, Chinese authorities announced they intended to release the names of all the HIV+ college students, purportedly for the purpose of warning the rest of the student body.
HIV, a chronic but manageable disease, requires a constant life-long supply of antiretroviral therapy drugs, which work to allow the immune system to function. Anya Sarang, the president of the Andrey Rylkov Foundation, a Russian NGO that relies on foreign donations, told me she hopes Russia’s HIV registry will help patients receive these medications. "This measure will hopefully improve the situation," she said. "Due to inadequate planning, we have interruptions of treatment every year and people suffer."
But others—like Natalia Sukhova, a project coordinator at EVA, one of the only non-profits in Russia that connects HIV+ women with medical support—are more ambivalent.
"It’s a positive thing that there will be a general register of those who need treatment, but the control and protection of access to this register causes great doubts among all the people directly affected by HIV," Sukhova told me.
As of now, it’s uncertain if those on the registry will even receive the medication they need, since the Russian Health Ministry announced last month that the country cannot afford to spend $1.2 billion that was allotted for HIV/AIDS relief. The money was intended to subsidize medication for those on the registry, as well as fund free HIV testing. With the refusal of political conservatives to support safe sex campaigns or needle exchange programs, and the disbandment of foreign funded NGOS, the situation looks dire.
The figures that the Health Ministry has released, which show that 824,000 HIV-positive people, likely vastly underestimates the real numbers of people living with HIV and are too afraid to get tested or to announce their status. Other reports suggest a million people have registered.
"The women that come into the clinic cannot even imagine that they may be at risk for HIV," said Sukhova. "Most women do not belong to any risk group, and don’t know that the HIV epidemic in Russia has been spreading among the general population for a long time and that any woman of any age and social status could be at risk. Discrimination [against women] in Russia is a permanent phenomenon that affects everyone, but HIV-positive women even more."
Now many HIV+ women must face an ultimatum—either register and face potential discrimination or sacrifice potential aid and medications.
"I won’t register," one woman who receives care through EVA told me. "If it wasn’t for EVA, I don’t know what I would do."
For years, the Russian Health Industry has warned that the HIV epidemic could escalate out of control by 2020 if treatment is not expanded, but the government has been slow to respond. Many government officials have claimed that evidence of an HIV epidemic is propaganda and part of a foreign "information war." At a meeting last year, the Russian Institute for Strategic Research (RISR) released a study showing that condoms were to blame for the rise of the disease.
"The contraceptive industry is interested in selling their products and encouraging under-aged people to engage in sex," said Igor Beloborodov, the co-author of the study. "The best form of protection is to be in a heterosexual family where both partners are loyal to each other."
Beloborodovs’ comments echo the increasing influence of the Orthodox Church. Russian conservative politicians and executives are seeking to minimize safe sex education in schools.
"The safe sex campaigns are not allowed anymore," Sarang told me. "The conservative agenda in Russia focuses on promoting Russian Orthodox Church values, such as abstinence and monogamy, no sex before marriage, and other idealistic bullshit."
According to Sarang, much of the sparse government funding that has been allotted for HIV relief has been spent on counterproductive campaigns, such as a one $1 million initiative last year, which promoted the message that condoms don’t protect against HIV.
"If the register leads to more money spent on treatment medication, rather than these useless campaigns, then it’s a good thing," Sarang said.
However, some young women, such as sex workers, are unlikely to enroll in any type of register that will associate them with the highly stigmatized disease, even if it’s the only way that they could receive life-saving medications. Currently, one-third of sex workers don’t have the necessary paperwork to receive government aid and experience too much stigma and financial limitations prevent them from seeing private doctors. It’s unclear how much a register will even help these women.
"I’m without much hope because every year more and more medication shortages occur and there are huge concerns related to the quality of the drugs that do exist," Malyshev told me. "There needs to be more assistance for those who have HIV, but many people will be afraid to enroll in a register that could help them. Those who will the most afraid of enrolling in a register, such as drug users and prostitutes, are also the least likely to engage in private alternative treatment options due to discrimination."
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