Boycott or support? Part 2.

15 March 2016

The website of the Fifth Conference on HIV/AIDS in Eastern Europe and Central Asia has something like a banner with countdown to the conference. When I was writing this note, the banner showed there was a bit over three months left. Apparently, many are looking forward to this conference, but are activists of the drug user community working in HIV/AIDS prevention looking forward to it?

Overall, the website produces a nice impression – quality design, a good search system and sections. It’s obvious this is good quality work with the news being posted on time. And if we open the first section of the website called “About Conference” we are immersed in some interesting and useful read. Even though there isn’t a lot of text in this section, many interesting things can be found in it. For example, in the very beginning it says that the spread of HIV in our region continues and has gone beyond vulnerable groups. Let’s not dwell on another sentence in the same paragraph that says, “...The efforts of the countries of Eastern Europe and Central Asia (EECA) to contain it at the concentrated stage…” Apparently, this isn’t about the largest country in the region – Russia –but about its neighbors that are more successful in terms of HIV/AIDS prevention. Instead let’s talk about the authors’ words “... The region has the potential not only to efficiently hold back the epidemic but also to stop it from being a threat to human health by 2030. These goals are achievable thanks to the latest scientific studies in treatment as prevention, an increase in the number of people on treatment, availability of staff and finances, building up a potent civil society and developing sustainable healthcare systems as well as close international cooperation."

Before we try to analyze these interesting ideas, let’s recall the fact that the epidemic is still largely concentrated in the community of injecting drug users whom the website timidly calls a vulnerable group. By the way, pay attention to the fact that the website doesn’t talk about drug users, gay people, sex workers, etc. I think this shows all the hypocrisy that we’re seeing in HIV prevention among drug users, LGBT and commercial sex workers. Rather than seeing people and communities, the conference organizers and participants probably see objects that look like vulnerable groups.

Let’s return to the statement about the region’s potential to hold back the HIV epidemic, and look at it from the perspective of the community most vulnerable to HIV – the community of people who use drugs.

Treatment as prevention and an increase in the number of people on treatment. Seriously? Without harm reduction programs, without opioid substitution therapy, without overcoming stigma and discrimination? Not possible.

A potent civil society. How is this possible when all projects that deal with evidence-based methods of HIV prevention among drug users are systematically strangled and denied funding?

Close international cooperation. In recent years Russia has gone its own way and for some reason international experience of HIV prevention among drug users doesn’t suit us.

All of this saddens me as a social worker and a representative of the community of people who use drugs.

The organizers’ statement that activists from different countries are going to participate in the conference deserves a separate mention. We all know that key steps in a successful fight against the HIV epidemic must be taken together with the most vulnerable communities. So how will drug user activists from the region be presented? We remember that the Eurasian Network of People Using Drugs supports a boycott of the conference and, consequently, the only (and largest) association of drug user communities is not involved in this expensive farce which is worlds away from the interests of communities affected by the epidemic, for ideological reasons. But perhaps activists from the neighboring countries would like to participate in the conference individually?

Let’s hear from people known in their countries and abroad: drug user community representatives working in HIV prevention.

Andrey Yarovoy, social worker (Ukraine):

I have a complex attitude towards the conference, because I have always thought that we should try to make ourselves visible in those places where we are not welcome – and not just show up but also speak out. In particular, in a situation where Russia’s drug policy is leading the country to a catastrophe. A catastrophe of a general type (I mean the spread of HIV/AIDS). When thousands of people are literally written off and the only choice they have is between prison and the grave. I mean the ban on substitution therapy and so on, when harm reduction programs are shut down and organizations implementing them are persecuted by Russian authorities. But in this situation I would like to talk about that using all accessible platforms. However, as far as the EECAAC goes, even going there and speaking on behalf of my community, on my behalf, is impossible because I’m a patient of a substitution treatment program. I could receive the drug on prescription at home, as usual, and go there like I would go anyplace else. But I have questions: what happens when I cross the border and so on. And still I realize that my trip would be completely useless, it’s the same thing as talking to a brick wall. It’s useless. We could speak up but we’d hardly be heard. But I would still be ready to go there, even just to spoil their party.

Supposedly some drug user community representatives are going to be there, but that’s basically a publicity stunt. I don’t know what else to call it. They won’t even be able to represent our community. They were not delegated by the community; they don’t even know what our needs are because they live in a different world from us.

Kestutis Butkus, program coordinator of drug user organization Resetas (Lithuania):

I’ll join the majority – we need a boycott. Because the country’s policy and the conference itself – it’s just for show. The only thing that matters to the community is that, as I’ve heard, they will be discussing legislation that deals with access to HIV testing in Russia.

As for my participation, I can’t participate because I’m in a methadone program.  This in itself is a limitation for many people who maybe would like to, and could, attend the conference. They would like to exchange information, find partners, do some other positive things but they can’t – because of the Russian public health policy that is beginning to resemble an unfunny joke. In general, an uncompromising stance and ill-conceived actions in the field of HIV prevention in Russia have little to do with reality.

Vitali Rabinciuc, coordinator of the mutual help groups “Association Youth for the Right to Life” (Moldova)

I have taken part in the EECAAC, the previous conference. What I thought was illustrative was that during sessions, when people from other countries made their arguments as part of a dialogue about how they had advanced in the fight against the epidemic using harm reduction and substitution therapy programs, at the same time some bigwigs from Russia made sarcastic remarks but didn’t put forward their own arguments. At the same time they were trying to influence everybody’s feelings using the only argument: “we have our own way of doing things”. While their opponents proved the effectiveness of HR and OST using numbers and evidence of social progress. I saw how many of the activists became irritated. I saw how facilitators tried to cut their presentations short.

I don’t know that it’ll be like this time, but at the previous one Russian representatives who spoke about vulnerable groups didn’t even name these groups – PUD, IDU, MSM, CSW, prisoners and others. Even when people in the audience specifically asked to name the groups that the presenter was referring to when he used the words “vulnerable groups” or “risk groups”.

There were quite a lot of people at the conference, and a lot of money was spent. I don’t think that many people’s expectations were met.

This platform could be more useful if the conference was held in other countries of the region.

Then those who can’t attend it now would be able to participate. For example, activists who represent OST clients.

I understand the feelings of those who are boycotting the conference – this is obvious from the above. And I share these feelings based on my own experience of attending the previous conference. I think that people who are fighting the HIV epidemic in their countries every day shouldn’t be treated this way. In fact, many of them have HIV. People expect real changes from these high-level meetings in terms of bilateral dialogue. Will there be constructive dialogue? Will we be heard? I doubt that.

These are opinions of people who represent the drug user community. And these are not just their opinions; they are shared by many people who support boycotting the conference. When I interviewed these people I thought all the time about the amount of money already spent and would be spent on this conference, yet activists representing the community most vulnerable to HIV – the drug user community – won’t be able to participate. What’s the worth of all the presentations, speeches, strategies to combat the epidemic if the affected communities can’t participate? It’s important to remember this when deciding whether one should attend the conference or not.

P.S.: Before I wrote this, I wanted to talk to the organizers and to the UNAIDS representative about the fact that the community of drug users can’t participate in the conference. I still haven’t heard from them.