Alexandra Volgina: "I do my best to promote our region by saying: “Hey guys, it’s not just Africa!”"

28 April 2017

Alexandra Volgina is a co-founder of the charitable organization Svecha. She is one of the first people in St. Petersburg and Russia who publicly spoke about her HIV status. In 2005, Alexandra received an MTV award for showing outstanding leadership in the fight against HIV/AIDS. Five years ago Alexandra emigrated to Ukraine where she works at the All-Ukrainian Network of People Living with HIV/AIDS.

The first question is about history. How did your work begin?

In 2002, in St Petersburg we organized a self-support group. We called it Svecha. We were fighting for access to HIV/AIDS treatment. We were all drug users, so the issue of substitution treatment came up pretty early.

How many organizations were there in St. Petersburg at the time?

Humanitarian Action, Svecha, foundation Delo, that’s it. We also received support from the Antifa Front. We had no idea how to organize civil disobedience actions. Through Irokez (Andrey Rylkov) we met radical ecologists from the Rainbow Keepers. Back then if a [medical] commission concluded that you were using drugs, your medical card would be labeled as “not eligible for treatment”. You would be the least promising patient: a drug user living with HIV. Those guys said, “This is fascism”. They came to visit us in St. Pete and began working with us. This is how FrontAIDS came to being. Initially we were talking only about ARV treatment, generic drugs and ARVT price reduction.

Why?

Very little information was available at the time. The internet was small and deficient...

With [dial-up] modems!

Yes, we were finding information, meeting harm reduction people together with Irokez, and all of us in the organization were discussing substitution treatment, whether it was good or bad; should we support it or not. In the beginning we were thinking: “How could it be, substituting drugs with drugs?”

And how many people living with HIV were there in St Petersburg back then? Anya Sarang said in her interview that in Moscow only about 50 people were officially registered.

There weren’t any people who would speak publicly about their status. However, I do remember there were talks about ARV treatment being available for 300 people. In reality there were thousands of them, people were dying... We also ran a palliative care and support program. Nobody wanted to take care of people living with HIV, everyone was afraid: people die of AIDS, one shouldn’t get close to them. Even relatives did not visit them. The early 2000s were tough times. We were taking care of our people, of those who were dying.

Did you organize some sort of a center?

One Christian organization helped us organize a palliative care project. They were working with faith-based organizations from Denmark and Norway. By the way, they also helped us with our actions. Those were the times.

So how did the situation evolve?

We organized actions in Kaliningrad, St. Pete and Moscow. All this took about a year and a half. Then those on top made a political decision: that’s it, now we have an AIDS epidemic and we will treat it.

What year was that?

In 2004, we chained ourselves to the Ministry of Health building and blocked several lanes of traffic, and then a Deputy Minister, his name was Starodubtsev or something like that, came down to talk to us. He told us that we would meet in St Petersburg. I remember that conversation very well. He said, “Yes, ok, HIV treatment will be available.” Irokez asked him, “And what about substitution treatment?” And he responded, “No. This won’t happen for sure, no chances at all”.

Did he explain why?

That was their attitude, although this topic was much less politicized back then. They did not want to substitute drugs with drugs. No, that was the end of discussion.

Were you approximately at the level of your initial discussion?

The only difference was that we made a somewhat different decision and they didn’t. In the late 2000s, it became crystal clear that they were not going to do anything. Moreover, with ARVT interruptions treatment became less and less accessible. We resumed our actions, but under different conditions. It became more difficult to take it to the streets; protests were no longer broadcast on TV: mass media had a moratorium on covering protests. One step to the right, one step to the left, and you ended up in prison. This was a very different media and legal environment. We were hoping to advocate at least for the ARVT drugs.

Is this why you decided to move to Ukraine?

I moved in 2012. I remember writing a blog on Radio Liberty that it was the Day of Remembering People Living With HIV but that I would not go. That for the first time in my life I was contemplating emigration seriously. This whole xenophobic story had pissed me off: that gay people were bad, that some other people were bad, that we were surrounded by second-rate people whom we should all hate. I think that I’ve done many good things in my life, I do not like the idea of being a foreign agent, I do not like being checked on all the time. In August that year I moved.

So you did not see any perspectives?

I simply was very tired, completely burnt out. Then these men came. One of them approaches me and says: “You are taking care of your child on your own.” They haven’t changed at all. In my childhood, when my dad was a dissident, this same type of men used the same approaches. In Ukraine I can fulfill myself.

What do you do there?

I work at the All-Ukrainian Network of People Living with HIV. Recently we developed a really cool big project to promote self-testing in three countries. I see that I can do good things for so many people there. If I am not needed in my country, and if my country is moving in a completely different direction, what else can I do?

I represent our region at international organizations; I work with Moldova and Tajikistan. I am helping with some processes, collecting information, bringing it to the international level and vice versa: I take information from the top level and bring it down. I work, I feel like a world citizen, to put it bluntly. I do my best to promote our region by saying: “Hey guys, it’s not just Africa!”

Michel Kazatchkine said in his interview that early on they only paid attention to Africa and missed the opportunity to curb the epidemic here.

That’s right, but we should go back while it’s not too late.

What’s the current situation like in Ukraine?

It’s great if we are talking about “nathnennya”, it’s a word in Ukrainian (“inspiration” – EHRN comment). A healthcare reform is underway right now: how can we make sure our field of work is included in it? Budget advocacy is very interesting. I’ve always been into patents and price reduction. They are currently reducing the price of hepatitis treatment; there have been attempts to buy generic drugs. There are anti-corruption activities. There are many fascinating stories; you can work, do something good, and actually achieve something.

If we compare countries in our region, what would be the main obstacles for activists? Are these state policies, public stigma, civil society counter-agents?

This depends on the country. In Russia, you can organize Patient Control and spend six months organizing 38 actions across the country. But if the system recognizes your efforts and if you manage to persuade the system to make certain decisions, they will do everything themselves. They will never allow you to get involved in the design.

In other words, “a man's word is his bond”.

In Ukraine they can come to you and say directly, “Yes, everything is in fact so bad”. And nothing will happen. You either come along and do something together with them or nothing at all will happen. In Russia, you call Agora (a human rights association of lawyers and advocates) and they explain to you, “This means 7 years, and that, Sanechka, means 9 years.” There is nothing like that here, there is freedom of speech and you can chain yourself to any building you wish. However, that does not necessarily lead to real changes. We are yet to learn how to work with them, how to achieve what we want.

Do state policies in the region help or hamper your efforts?

I would really like substitution treatment to be taken from the regional to the municipal level. The more is done at the community level, the better the results. When community members solve their issues themselves, they do it better, faster, cheaper and more efficiently. This includes social and medical issues. That’s a European approach and that’s so cool.

Speaking of Ukraine, now that harm reduction programs and substitution treatment are available, what’s next?

Now it is important to institutionalize everything and transition to government funding. I personally am worried about the quality of these programs and about the people targeted by them. We have reached the people who participate in harm reduction programs: they are 30-40 years old, they are opiate users, and they do tests and receive syringes. Let’s take a look beyond this group. The Internet has changed the drug use practices drastically, and many new drugs have emerged. Now someone can transfer their money to Privatbank and pick up the stash, and you won’t even see them. There are stimulant users, people who use home-made and other drugs, users of pharmaceuticals, young people; how shall we deal with all of them?