Andrey Rylkov Foundation
for Health and Social Justice

“Why are they bullying us?” Open letter from Anya Sarang

By Anya Sarang

At the end of last year, the authorities started to show a bit too much interest in our NGO, the “Andrey Rylkov Foundation for Health and Social Justice” – interest of a rather strange nature. It all began with a phone call from a representative of the Head Department for Economic Safety and Corruption Counteraction under the Ministry of Internal Affairs. He told us that they had received a complaint concerning our organization. Then, right after the winter holidays, we were summoned to the Prosecutor’s Office. And then, just last Friday (February 3), the company supporting our website informed us that it had blocked the website following an order from the Federal Drug Control Service. It seemed like someone was really out to get us. But why?

Our NGO works on issues related to drugs and drug policy. Our mission is to promote more humane drug policies, which are rooted in protection of health, human rights and dignity. Our work is carried out by people who in one way or another have been affected by drug use, either personally or through their friends and relatives. We work directly with people affected by drug use and those actively using drugs. Every day we go out into the streets of Moscow to meet with drug users, to talk to them about their health issues, to hand out information on HIV and viral hepatitis as well as clean needles and condoms, to offer HIV rapid tests and naloxone, and to refer them to various medical and social agencies within the city, to drug treatment clinics and to the few rehabilitation centres that exist in our country. We often get calls from drug users in other Russian cities, mainly asking for help with getting medical treatment or legal assistance.

Our everyday contact with drug users has shown us that the biggest problems have to do with widespread violations of drug users’ rights and the inability of the healthcare system to address their health issues. Recently, we lost one of our social workers: she worked with us for just over a month, mainly on getting our clients admitted to hospitals. Before long, she wrote a letter saying that she could no longer continue her work, as she couldn’t deal with continuous humiliation of our clients and the feeling of utter hopelessness. This young doctor was shocked by the way our healthcare system “addresses” drug users’ problems – it simply ignores them!  Despite all of our efforts, some of our clients end up not getting any medical help at all. One person who needed a serious surgery was turned away because he was a drug user. At the same time, his withdrawal symptoms could not be addressed, because the drug treatment clinic refused to admit him with his surgery complications. As a result, he found himself in a vicious circle, in pain, running a fever, facing the risks of losing a limb and dying of sepsis. Our social worker felt that she was entirely unable to help him. Every day, every week we meet such people – those who can only hope for a miracle. The Russian healthcare system offers no solutions for them.

The same thing is happening in our country with tuberculosis. Last year, we conducted a survey in 13 Russian cities. The survey showed that in some cities up to 100% patients who use drugs do not complete the full course of TB treatment.  Why?  For the same reason: patients with active TB are not admitted to drug treatment clinics and the TB clinics are not prepared to deal with their withdrawal symptoms. The moment they get well enough to get out of bed, they leave the hospital in search of drugs to ease their pain.

So, whose fault is this? Your average person might say something like: “These are junkies. They’ve got no one to blame but themselves. They don’t care about their health”. Even doctors – who know perfectly well that drug dependence is a illness – tend to blame the drug users. Maybe the doctors have no other choice, as the healthcare system has no solutions for these situations. Maybe that’s why drug dependence is the only medical condition in our country that is not really treated; instead, people are sent to prison. But because we work on issues related to drug policy and drug use, we know that this problem is not impossible to solve. Other countries have found a simple solution–substitution treatment with methadone. Substitution therapy means that an opioid-dependent patient gets a legal narcotic substance under medical supervision. A person on substitution therapy can also get inpatient treatment for any other medical conditions. They don’t have to spend time and effort searching for drugs or money–they are not in withdrawal. Instead, these people can use this time to take care of other health problems: get treatment for HIV, hepatitis, TB, etc. Many people become employed, start studying; they stop stealing and making the lives of their loved ones difficult. They simply live their lives. Those who want to get rid of drug dependence can go into detox and rehabilitation programs, which are both accessible and well-developed, unlike in Russia.

Substitution therapy is not just a cheap and simple way of helping a large number of people; it is the key to developing a system of medical care that is able to address a wide range of health problems faced by drug users. Substitution therapy is considered to be the basic foundation for drug treatment in all countries where opiate dependence is an issue. Methadone and buprenorphine are included in the list of essential medicines developed by the World Health Organization. Substitution therapy is available in almost every country of the former Soviet Union with the exceptions of Uzbekistan, Turkmenistan and Russia. For some unknown reason, the authorities in Russia are against it. The Ministry of Health has on several occasions expressed its opposition to substitution therapy. Opposing introduction of these programs was included as a separate item in Russia’s drug policy strategy, and was approved by the President in the summer of 2010.

It’s hard to know what’s behind this opposition–we can only guess.

First of all, Russia’s drug treatment was founded on the principles of repressive psychiatry.   The patients were either “treated” in labour camps, or with neuroleptics and other medications, for the use of which Russian psychiatrists were expelled from all international professional associations. Nevertheless, many of these medications are still part of the current drug treatment guidelines. For example, haloperidol has nothing to do with drug treatment –it is used as punishment for patients in drug treatment clinics.

Secondly, as Evgeniy Brun, Russia’s chief drug treatment expert, has noted, substitution therapy is much too cheap as a treatment method for our prosperous country. The patent on methadone has long expired, and its price, according to Mr. Brun, is ridiculously low. There is no profit to be made in selling methadone; it only appeals to those whose main interest is in benefitting the society, as tenders for this drug can hardly generate profits. Apparently, this doesn’t appeal to the Ministry of Health.

In any case, guessing the reasons for their opposition can take a while. Substitution therapy has become one of the cornerstone issues of our work aimed at reforming Russia’s drug policy. We do a lot of advocacy to make this therapy available for Russian patients. Two years ago we submitted a shadow report to the UNCESCR on Russia’s failure to fulfil its obligations in accordance with the Pact as it relates to the right to health for drug users. UNCESCR issued strong recommendations to Russia to provide the legal framework to enable introduction of substitution therapy programs, which are approved by the WHO and are considered the gold standard for drug treatment. These recommendations were handed over to the President who passed them on to the Ministry of Health. The Ministry’s formal reply was that these programs would not be introduced in Russia. That wasn’t the only letter to which we had received such a response. We’ve sent numerous letters to the Government, the President, the Ministry of Health, and the Federal Drug Control Service explaining in great detail why substitution therapy is essential for both HIV prevention and decriminalization of drug use, as well as for addressing various health and social issues faced by drug users.

The reply was always the same.

At the same time, the Ministry of Health continues to disseminate false information about Russia’s HIV epidemic (“Everything’s fine, and as for statements that Russia is the only country where the HIV epidemic is on the rise, the UN is lying!”), about the situation with TB treatment (“Everything’s fine, and as for statements that Russia has the third highest rate of MDR-TB prevalence in the world, the UN is lying!”), and about drug use (“Everything’s fine, and as for statements that Russia has some of the highest rates of drug use in the world in the absence of adequate drug treatment, the UN is lying!”). The extent of hypocrisy and shamelessness with which the Ministry of Health continues to mislead the general public about the state of healthcare is truly shocking.

Our website, which we’ve worked on for the last three years, and into which we’ve put all of our love and care, contained interviews with people who faced problems with accessing medical care in Russia, or who managed to overcome their addiction. There were articles and blogs by medical experts and drug users, scientific publications and WHO recommendations on drug treatment. There were recommendations and publications on human rights, information about the work of our organization, including detailed description of specific projects as well as financial reports. Our website had an ad memoriam page, remembering the friends we’ve lost to HIV, TB and drug use; those people who are merely numbers or negative statistics for the Ministry of Health. For us, however, they were friends, people we loved and lost. Our website had a lot of materials created with love and soul, and hope for a better future for our county. But it didn’t have “materials that propagandize (advertise) the use of drugs, information about distribution, purchasing of drugs and inciting the use of drugs”, as was stated in the order of the Federal Drug Control Service, which led to the closure of the website.

We’ve already heard about the launch of “repressions” against NGOs in our country. The ruling party has some plans in the works to filter out the undesirables. Apparently, as is the case with us, they’ll begin with those organisations that are working on issues that the state doesn’t care about, or is too busy to address, or which no one is interested in resolving except for those directly affected. In our case, those directly affected are drug users, who are despised and abhorred, labelled as “scum,” who have no one but themselves to blame for their afflictions, who deserve not treatment but humiliation, who deserve to be beaten, chained, kidnapped, starved, and set up by the police. Those who deserve to have drugs “planted” on them, or robbed, or tortured to death in prisons.  Those who are to blame for all the ills of this society and this country. Those who are so easy to help, but whom no one wants to help.

And the ones who do want to help will be severely punished.

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