Stigma, denial of health services, dismissal, deportation – these are just some of the problems HIV-positive people in Russia can face. For 25 years Positive Dialogue NGO helps people with these problems.

A quiet street in the centre of St. Petersburg, a yard with bright graffiti – a portrait of a girl with long hair and the text Lu Blue. No other graffiti so far.

Mikhail Stupishin, the head of Positive Dialogue, meets me at the door. A few steps down, and we are in a bright office. The Positive Dialogue only recently moved into the building, because for years before it was located on the grounds of Botkin Infectious Diseases Hospital.

– The first quarter of the 21st century is coming to an end and people still have HIV-phobic cockroaches in their heads,” laughs Mikhail, pouring coffee and talking about the move. – Four premises were refused to us due to the nature of our business. At the preview, we explained that we are now focused on individual counselling and not on mass events, we said that we have a flow of clients, but not as a mausoleum, that we work with a socially significant disease – HIV infection. We were told: “Yes, yes, yes, everything is great”. And when it came to concluding an agreement, they said: “We looked at the website what you do. This is too extreme for us”.

I am reminded of Anna, the heroine of my text ‘Anna and Her Victories’, a mentee of Positive Dialogue. What is extreme is the treatment she and many other people face time and again because of their HIV-positive status. For example, when her own mother, an experienced health worker, forces her daughter to eat from separate dishes even though there is no contact-domestic transmission of HIV. Or when a person is not wanted to work because of his/her HIV status, despite the fact that thanks to therapy (free and accessible) his/her viral load has been undetectable for a long time – this means that he/she cannot infect anybody in any way. Anna told us that in the most desperate situations she called Positive Dialogue and thanks to her conversation with lawyer Alexander Loza she solved problems with her job and then with her studies more than once.

Alexander joins Mikhail and me, we shake hands and begin a conversation that lasts more than two hours, but even that time seems short. The problems faced by people with HIV in Russia are too many.

“Positive Dialogue started as far back as 25 years ago. It was founded by Nikolai Panchenko, a lawyer and one of the first registered HIV-positive people in the USSR. He recently celebrated his 70th birthday and handed over the leadership of the organisation to Mikhail Stupishin a few years ago, but Panchenko’s name keeps coming up in conversation – it was he who started the education work, talking about HIV prevention and life with HIV. This is as necessary now as it was a quarter of a century ago.

– Sasha has been working here since 2004, and I joined in 2015,” says Mikhail. – At that time two big prevention projects were launched: HIV prevention among men who have sex with men and HIV prevention among female sex workers. I came upon the recommendation of an acquaintance. I have secondary medical education. I am not a doctor but a paramedic. I know anatomy well, I know pathophysiology well, or at least I knew it, I understand where the legs are growing from.

In addition to his medical education, Mikhail graduated from the University of Culture, and Alexander studied at St. Petersburg State University. A medical doctor and a lawyer, both have extensive experience of working with people in difficult life situations.

– Many people need legal advice,” says Alexander. – Not everyone has the money to pay for a consultation, not everyone wants to talk about their specific problems, and not all lawyers are practiced at it.

– Do they often come to you with work-related issues? – I ask. But it turns out to be not quite what I imagined.

According to Alexander, medical workers who have to undergo compulsory tests, including HIV tests, every year are most afraid of being fired. However, police officers and employees of the Ministry of Emergency Situations also seek advice: contrary to the federal legislation, these agencies impose a complete ban on work for HIV-positive people – they issue local acts on undergoing medical examinations and declare them unfit or limited fit for service.

– Is there anything you can do in such situations?

– Well, back in Soviet times, an act was passed that people with HIV infection could not be commanders of aircraft,” Alexander sighs. – Five or seven years ago, one captain was diagnosed with HIV. He went to the General Prosecutor’s Office, the General Prosecutor’s Office went to the Supreme Court, and the Supreme Court ruled the act illegal. But the man had to disclose his status to everyone. It is not about the court per se – a person’s name can be hidden in the documents. But the employer often puts pressure on the employee, may spread rumours about him.

Mikhail cites the story of his acquaintance, who was literally “eaten up” at work, in the most ordinary office, when he found out about his HIV status. Litigating in such situations can be futile: legally, the case is a win-win – the dismissal is illegal, but they will not give you life at work.

People rarely go to court against employers, and as a rule, it is high-profile cases that change the local normative acts of an organization.

– We have it written into the law that this is discrimination, that the employer will be fined, there is criminal liability,” Alexander says. – But everyone tries to do it quietly: you resign at your own request, you get some severance pay, and you leave quietly (what happens to you next is your problem), while we will be white and fluffy. I always say that fighting for one’s rights is fraught: they can create such conditions that a person will be forced to leave. Constant stress is also bad for the body.

Last year, according to Alexander, the Prosecutor General’s Office tried to issue a local act banning people with HIV from working, but there was an uproar and the agency had to abandon the idea. But the Ministry of Railways and Communication seems to have succeeded in introducing a local ban.

– In general, if you start having problems at work because of your HIV status, the only way out is to look for a normal employer?

– We don’t have a ‘normal employer’ as such,” Alexander shakes his head.

– It’s not so much about the employer,” adds Mikhail, “it’s more about your direct supervisor or upper management if you are in his position.

He recounts cases of people being tested for HIV without their knowledge when they are hired. This practice is, of course, illegal:

– The issue of informing about a person’s status is generally very strict: no disclosure, only at the official request of the court or the prosecutor’s office. Only then the AIDS Centre is obliged to provide information whether the person is registered or not. If a person realises that he or she has not told anyone about his or her status, but the employer has the information, it means that during the medical examination, blood was taken for HIV infection. But, in theory, the employer cannot make any further moves, because the whole story is illegal.

– And what other problems do people come up with?

– Access to medical services,” Alexander answers without thinking for a second. – It happens that a person has to undergo a planned surgery, he knows that he is HIV-positive, and in the medical institution they either try to talk him out of it or redirect him somewhere else, or just put him into a paid ward, even though everything should be free of charge under the MHI.

– They either try to charge him money or refuse to take him at all because of his HIV status,” Mihail says without euphemisms.

– No one says it directly, they start using various medical terminology or “your indications are not right, maybe in a year”. In medical institutions we always recommend to ask for a written refusal. What the doctor says in the corridor, you will not be able to prove anywhere else. The doctor realises that by writing such a refusal he or she will put himself or herself and his or her medical centre in danger. And then the doctors are more likely to put on double gloves and do everything, gritting their teeth, – Alexander is sure.

– And they will do it as well as possible, so I won’t have to come back again,” laughs Mikhail.

– At the same time, everyone treats hepatitis C, which is more dangerous, much more easily,” says Alexander, bewildered. – If you tell dentists that you have hepatitis C, the doctors will take it easier than if you tell them about HIV.

IF YOU MENTION HIV, YOU’LL PROBABLY HEAR: “NO, NO, NO, WE’RE ON OUR LUNCH BREAK, COME BACK NEXT TIME”.

In medical institutions, Alexander and Michael explain, often if a person says they are HIV positive, they are sent to the back of the queue. This is such a small discrimination. They won’t refuse to help, but they will accept him last – to disinfect everything afterwards. This is despite the fact that disposable instruments are used or everything is disinfected after each patient.

– Generally, health workers have instructions to suspect every patient is HIV and hepatitis C positive, to wear gloves and masks in every situation. But when funding is a problem, gloves can be wiped down with alcohol or something else cannot be done.

– And sometimes there is just a flood of patients, and it’s just the human factor.

– But if there is a risk of disease, health workers are immediately put on PEP – free post-exposure prophylaxis. This equates to an occupational injury,” Mikhail sums it up.

But legal recourse is not limited to medical issues either. People who are HIV-positive are increasingly facing blackmail.

– Either a former cohabitant or a former spouse blackmails them,” explains Alexander. – They start threatening that, for example, they will disclose their status to their relatives.

– Can this be dealt with?

– If a person fears it, they can go and write a statement to the police, because it is an invasion of privacy. Such reports are obligatory because we have a Criminal Code. The report will first be investigated, one party will be called, and then the other party will be called. Maybe at this stage the blackmailer will realise that he is doing it for nothing. Sometimes blackmail is attempted by people who are already HIV-positive themselves.

– Maybe both of them were already infected when they met and were afraid to tell each other. We are all afraid,” says Mikhail. – This goes to the issue of self-stigma caused by stigmatization from society. The further into the woods it gets, the harder it becomes to tell your partner. I recently had a consultation: we talked on the phone for an hour and a half (we didn’t have an office at the time). A guy “plus” (tested positive), he has a regular partner who is HIV-negative. The client says: “I know everything, I understand everything, I understand that people live with it, and the story with the pills does not embarrass me.

“BUT HOW DO I TELL HIM? I DON’T WANT TO LOSE HIM, AND I’M AFRAID TO TELL HIM.

This is the self-stigma that emerges thanks to our beloved public, which still believes that HIV infection is collapse and death.

The situation is even more difficult when an HIV-positive person is a citizen of another country. One can avoid deportation only if one has close relatives or a spouse with Russian citizenship. The amendments about relatives, which make life a little easier for foreigners, have only recently appeared and do not always help.

– In one case, I had to file a lawsuit in Moscow against Rospotrebnadzor,” says Alexander. – A Ukrainian citizen has entered Russia. His wife is Russian. The court overturned Rospotrebnadzor’s decision that his stay on Russian territory was undesirable. The man’s wife recently called and said that he had to renew or get a new residence permit, but the police were refusing him on the grounds of his HIV status. They demand a certificate from the AIDS Centre that he is registered there and the AIDS Centre says: “We won’t take him on the register because he is a foreign citizen. All the same, there are legal obstacles.

– And if there are no close relatives who are citizens of the Russian Federation?

– A foreigner is subject to deportation. In the CIS, only two states still deport citizens with HIV: Russia and Armenia. The others have acknowledged that it is not dangerous, and the foreigner himself, knowing that he has HIV, runs to the nearest AIDS centre and gets registered there to receive therapy for money, because he himself is interested in it, because then he will have a normal life, work and finances to support himself.

– It is scary to think about the level of stigma faced by migrants with HIV. Where does this rejection of HIV-positive people, migrants and Russians come from? From ignorance?

– Now there is a lot of information, organizations, websites, information space has expanded. People can find and read everything themselves. But who is interested in it? The target group, people who have already become HIV carriers,” says Alexander.

– Stigma is associated primarily with a complete lack of awareness about this or that disease,” says Mikhail. – I have a number of acquaintances who still think that HIV can be contracted by drinking from the same cup. Speedophobia, or HIV-phobia, comes primarily from ignorance. Sexual transmission of HIV is now the predominant mode of transmission. HIV has long gone beyond the so-called key populations: injecting drug users, MSM (men who have sex with men), sex workers and sex workers. It has long entered the heterosexual field, socially adapted, with wives, husbands, families. At some point, people get tested because they feel bad: “Oh, we have HIV. Unexpectedly. There was a case when a young man – married, two children – went to hospital. He was brought by ambulance but he could not walk: he had terminal AIDS. Thanks to our Botkin doctors, who sometimes help out patients even in a very serious condition.

– But that is if there are no concomitant diseases,” adds Alexander. – But if a person has tuberculosis … At first, tuberculosis should be staved off, but as long as tuberculosis is being treated, there is no one left to treat HIV.

– Are there still a lot of HIV-dissidents?

Both my interlocutors nod. They say that a year ago, Russia started shutting down AIDS dissident websites that were writing about HIV being allegedly a conspiracy of pharmaceutical companies, and a number of NGOs addressed the State Duma with a proposal to introduce criminal punishment for AIDS dissidence. But fake information about HIV is still plentiful and it still leads to tragedies.

– The last high-profile case was in Krasnoyarsk in early summer,” says Alexander. – A little girl died there. The child was taken away from her mother, who was HIV-positive, and given to her grandmother, who also turned out to be a dissident. HIV infection has existed for so many years, there are already medical achievements, therapy, people live with it. The government gives you pills for free! Your task is just to take them at a certain time. That’s all. And live your life as you live it. Okay, if you had money taken out of your pocket you could say that it’s a conspiracy of pharmaceutical companies, but here the state takes all of it. What kind of conspiracy is that?

Mikhail points out that in St. Petersburg, the percentage of people who are registered and take therapy, thank God, is growing. But there is data that the incidence of the disease is also increasing, including among teenagers.

– So what to do about it?

– If we want to stop the growth of the infection in the general population, we have to forget about what we are told every day – about ‘crosses’, that there is no sex before marriage,” says Alexander. – It’s better to remove VAT from condoms, put condom machines in student dormitories for free distribution, certify female condoms. Elementary! Then the incidence of disease will go down. Let us at least introduce sex education in high schools, when hormones are kicking in. But no, we’re sitting here discussing television: “I got pregnant at 15. Oh, how did that happen?” And, again, our legislation: the age of consent is 16 and you can only talk about sex from the age of 18.

– That doesn’t mean we want to show pornographic films in school. We should at least tell them that they need to use condoms, and it’s not even about pregnancy, it’s about protecting yourself and your partner,” says Mikhail. – Of course, you have to somehow control who and what you say to immature minds. But now everything is so framed, you have to go through so many certifications to get into the same university. We are already silent about the school. And the university also has to make an application, select a specialist, and the specialist has to confirm his or her qualifications. Previously, universities used to invite NPOs in the areas they were interested in, but now this is practically non-existent.

Before the legislative changes, the rectors of universities often approached Positive Dialogue with requests to give lectures, tell them what HIV is and how to protect themselves from infection, and let them distribute condoms to those who wished to do so. Now all this is a thing of the past.

Mikhail says higher education institutions and teenage and youth centres under district administrations still have a prevention plan. But due to the new laws, the topic of sex may have to be circumvented. It is difficult for specialists to imagine how, especially taking into account that now HIV is sexually transmitted in the overwhelming majority of cases.

– Concerning access to preventive measures of HIV infection: the cheapest condoms cost 50 rubles for three pieces, but their quality leaves much to be desired. The simplest classic condom, which will not fit everyone’s size, is already 150 rubles for three pieces,” says Mikhail. – So what’s a student to do? Fortunately, we are able to replenish our stock and periodically hand out condoms with lubricant for free. It’s important that people get used to not getting it all for free, but to using a condom as such. Yes, there is pre-exposure and post-exposure HIV prevention (special pills that can be taken before or after potentially dangerous sexual contact), but there is still nothing better than a condom at this stage against HIV infection. Pre-exposure prophylaxis is very good, very right, but it does not protect against hepatitis, syphilis and other sexually transmitted infections.

Alexander recalls how Positive Dialogue had a joint project with a Swedish aid organisation many years ago. Colleagues told us that when HIV infection first appeared and became widely discussed, the reaction to people who were positive in Sweden was also harsh. For example, a car owned by an HIV-positive person could be sent straight to a landfill. Now, however, the situations are dramatically different in our countries. In Sweden and other European countries, sex education and all types of prevention, condoms are available and their use is encouraged. In Russia, there is an HIV epidemic, but neither sex education nor prevention is available to the extent needed.

– Prevention programmes in our country are underfunded,” says Mikhail. – But the process is necessary and it has to go on. The official statistics of St. Petersburg Committee on health protection says that there are supposedly only 10 thousand MSM in our six million citizens city. The official statistics on the incidence of disease among MSM is also understated.

Although HIV infection has long ceased to be a disease of exclusively key groups, it is still necessary to work with them and they need a special approach. But underreporting complicates the task, admits Mikhail.

Despite the fact that there are quite a few places in St. Petersburg where you can get anonymous rapid HIV testing, and the new office of Positive Dialogue has only recently opened, people already come here every day. The most recent clients include a couple starting life together and a young man who had a “risky situation”. Fortunately, all the tests were negative. But people who have just found out they are HIV-positive often come too.

Mikhail regrets that Positive Dialogue does not currently have the resources to provide fully qualified psychological help. “Psychological enquiries are coming in sporadically, but so far we have to work in peer counselling mode or refer them to partner support organisations.

– Everything comes down to money,” Mikhail explains. – The help of a competent professional psychologist is not cheap. And you need a whole staff here: the topic is not simple, it involves a lot of experience and different life situations. The specialists themselves are susceptible to burnout, there should be interchangeability, so that a person could be told: “Go for a walk for two weeks, so that no one touches you. Take care of the house, the garden, the garden”. There are situations that are more affecting to whom: to the person who asked for help or to the person who helps. Sometimes the stories are very difficult, especially when it is a newly discovered case. There are so many problems, you understand that they can be solved, but it takes time, you have to go through the stages of acceptance, especially the first and second stages, shock, anger, denial…

Positive Dialogue has literally only a handful of private donations, although the button on the website has been running since 2018. Getting the message across to a wider audience about how important it is to help people with HIV, that anyone of us can become a person with HIV, is very difficult. Grants and fundraising for individual projects help keep the organization going. Now, thanks to the EECA Fund for Operational Assistance to Key Populations of the region, we have managed to find and pay for new premises. In addition to assistance, it is necessary to engage in prevention, purchase and distribute condoms, buy test kits, ideally conduct seminars on adherence to healthy lifestyle and support groups for people with HIV with participation of medical consultants. Positive Dialogue once held lectures on HIV and the law even for doctors at a military medical hospital. The need for dialogue with doctors has not disappeared, but it has become much more difficult to organise such communication.

– As long as HIV doesn’t affect you personally, you stay out of it,” says Mikhail. – But if it has already touched you, you come running with goggling eyes: “Dear God, how can you live further? And it’s even better if a person runs here and not to the river embankment.

Over the past six years alone, Positive Dialogue has reached more than 31,500 people with its HIV prevention programmes. How many people it has helped in difficult situations is incalculable.

Positive Dialogue needs support to be able to fully assist all those in need. Any donation you can make will bring closer the time when the organisation will again have a full-time psychologist and perhaps support someone close to you. The organisation needs money for legal advice to help people who have been harassed at work, blackmailed or tried to leave the country. To do prevention work. So that the words “HIV is not a sentence” are not just words. So that the dialogue between different people, with all their advantages and disadvantages, can remain positive. Please support this organization. We all need it.

Слишком экстремальная помощь. Кто и как защищает людей с ВИЧ в Санкт-Петербурге

Стигматизация, отказ в оказании медицинских услуг, увольнение, депортация — вот лишь некоторые проблемы, с которыми могут столкнуться ВИЧ-инфицированные люди в России. Решать эти проблемы уже 25 лет помогают сотрудники общественной организации «Позитивный диалог»