Cross-posted in partnership from the HIV Human Rights blog and part of Rewire’s coverage of the International AIDS Conference, 2012.

Boarding the plane, I met Alexey Kurmanaevsky, one of the few Russian activists who went public about his life as a person who uses drugs. Alexey appealed to the Russian Ministry of Health asking for opioid substitution treatment (OST). His request was rejected. Then he sued the Ministry for refusing to provide effective, evidence-based treatment to its citizens. If the European Court of Human Rights agrees to review the case, there is a chance that it will find the actions of our government to be in violation of international norms. But for now Alexey Kurmanaevsky and I were travelling to Irpen, a small town just outside of Kiev, to attend a forum on HIV/AIDS for those who couldn’t be at the international conference in Washington, DC.

Upon arrival we met with Misha Golichenko from the Canadian HIV/AIDS Legal Network and Irina Teplinskaya, another drug user activist from Russia, who also went public about her drug use. She was the first person in Russia to file a lawsuit demanding access to substitution treatment. About a year ago when Irina was crossing the border into Russia from Ukraine, the customs officers found a methadone pill in her luggage. The local Federal Drug Control Agency got involved, Irina faced charges. But the whole world came to her rescue, Irina’s name became known in the UN corridors and the Russian Parliament. The poorly fabricated case was dismissed; the story with the methadone pill seemed forgotten. However, Irina no longer felt safe in her hometown—she now lives in Poltava, Ukraine, where she is a methadone patient.

The person who helped her and Alexey navigate through these cases is Misha Golichenko—a former police captain, a legal expert and simply an incredible person. So there we were, sitting and talking about the future of drug policy. And though all of us were in a fine mood, no one was overly optimistic. The thing is, for many years now the Russian government has been waging the so-called “war on drugs,” pursuing increasingly repressive drug policies and being staunchly opposed to harm reduction. Irina Teplinskaya and Alexey Kurmanaevsky came to Irpen to discuss this with their colleagues from other countries.

The next day, at the opening of the conference, Dasha Ocheret of the Eurasian Harm Reduction Network said: “I’m very happy to see you all; this is truly a star-studded cast!” She was right: the conference hall was packed with people from various Eastern European and Central Asian countries, as well as from several Western countries. Some of them spent time in prison solely because they’d used drugs. Many had been stigmatized because of their drug use or their HIV status. There were people from the Hungarian “Drugreporter” project, who came up with a completely novel way of reporting on drug policy. There was Michel Kazatchkine, formerly of the Global Fund, now part of the Global Commission on Drug Policy and just appointed the UN Secretary General’s Special Envoy for AIDS in Eastern Europe and Central Asia. There were activists from “Patients in Control,” a movement fighting for HIV and hepatitis C treatment in Russia. For many of these people, this was their first opportunity to meet offline, in person. All of us felt that this was the time to come together and mobilize. The hour is upon us.

I tried to spend less time in the sessions and more time talking and interviewing people. One of the most heart-breaking stories I heard came from Larisa Solovieva, a social worker from Kaliningrad. One of her clients, a patient suffering from excruciating pain had encountered a problem with access to opioid pain relief. At one point the doctor refused to prescribe tramadol to this young man, saying that the patient had developed a drug addiction, while the pain, he reckoned, was quite tolerable. When Larisa Solovieva demanded the necessary medication, the doctor said the following:

“If every AIDS carrier is going to boss me around and tell me what to do, I’m going to run out of prescriptions!”

The young man ran out of pain medication and died a week later.

When I hear these stories, I want to climb the walls with anger and frustration. Here we are, organizing forums, meanwhile the people are dying! And it doesn’t matter what you do—nothing seems to change!

There were a few people with us in Irpen receiving substitution treatment. Every morning they and those who wanted to learn about OST were taken to an OST site in Kiev. At first glance, Ukraine seems to be not that different from Russia, and yet they have substitution treatment with methadone and buprenorphine. I talked to people, I filmed them talking about how they walked away from street drugs and criminal activity, how they completed their hepatitis C treatment and began treating their HIV, how the quality of their lives had gone up. This is harm reduction in action! But, as it turns out, substitution treatment is still a contested subject in Ukraine. It is not uncommon for opponents to try and sabotage OST programs by attempting to sell drugs outside the clinics, or have journalists with dubious ethics publish slanderous articles on OST. During the forum we learned that Uzbekistan had shut down its OST programs, though at least the clients were warned ahead of time and could prepare for the transition. There are only three countries in the former USSR that don’t have OST: Turkmenistan, Uzbekistan and Russia.

One of the most interesting sessions was dedicated to strategic planning of the newly established Eurasian Network of People Who Use Drugs. We talked about the mission of the network, about how to structure our work, how to present it back in our countries. There were heated debates and even arguments, but for some reason I was thinking about something different. I was thinking that the western model of civic action and mobilization doesn’t work that well in the former Soviet Union.

In Germany and Holland it all got started as a grassroots movement, a lateral process of mobilization that gradually expanded into effective advocacy at the national level. But how many times have we tried to do the same! Ten years ago Russia had quite a few well-funded, well-staffed harm reduction projects. Almost all of them are gone now. Obviously, the Russian government isn’t going to provide any funding. International donors are all but gone or have significantly reduced their contributions. But what happened to the people?? Where are the “harm reduction activists?” With a few rare exceptions we hadn’t seen community mobilization in Russia, though there were opportunities. Yes, working in Russia is perilous. But people get long sentences for miniscule amounts of drugs, and that doesn’t deter them from using drugs. So why does advocating for drug policy reform, a less risky business from the legal standpoint, seem to be such a lonely battle?

When I was leaving Irpen, I thought to myself that no Global Fund, no international forums will be able to save us from our own trouble until we, ourselves, get to work, until we start to mobilize, until we take our destiny into our hands. It’s not that simple, no. But the hope shines on, like a star through the fog and darkness.