Nonexistent? We exist!

On the 28th of June in the framework of Drug Policy Week at the University of Geneva a documentary film “Nonexistent? We exist!” was shown.

The film is based on the result of the Program to expand the access of vulnerable groups to HIV / AIDS prevention, treatment and care services, which was implemented in the Russian Federation in 2015-2018.

The film told about the results of work under the Program to expand the access of vulnerable groups to HIV / AIDS prevention, treatment, and care services in Russia. This author’s documentary film about how the sincere desire of people to support each other, mutual respect and respect for rights should be the foundation of a modern health care system. Especially regarding socially significant diseases, such as HIV infection.

“This film is very authentic because it was created in cooperation with the representatives of key populations”, says Maria Yakovleva, executive director of the Russian Charitable Foundation “Candle”.

“Today 1 million people with HIV positive status live in Russia. A lot of them represent key populations that are more susceptible to HIV infection: people who inject drugs, men who have sex with men, sex-workers. With the help of this film we hope to draw the attention of our international partners to the problem of HIV infection in Russia and to show them that we are still far away from solving the problem and we need any support from the world society”.

The film was created by journalists Igor Kuzmenko and Alexey Kurmanayevsky from DUNews (Drug Users News) – an independent Russian-language news channel about events in and around a community vulnerable to HIV / AIDS.

After the film, there was a discussion about advocating for the needs of people who use drugs in Russia. Participants talked about the achievements of the project and the difficulties that communities are experiencing now caused by the absence of stable funding and stiffening stigma and discrimination of key populations. Daria Alekseeva, AFEW International Program manager, told about the role the organization plays in communities’ lives in the EECA region and particularly in Russia. AFEW International in cooperation with Aidsfonds provides small grants within the framework of the Operational Assistance Fund for key populations to help communities to execute harm reduction programs and to provide services to people.

You can watch the film “Nonexistent? We exist!” here



Daria Alexeeva: “The Majority of Applications to the Emergency Support Fund Come from Russia”

Author: Olesya Kravchuk, AFEW International

Starting from December 2018, organisations from 10 countries in Eastern Europe and Central Asia can receive small grants with a maximum amount of €5,000 per grant. AFEW International and Aidsfonds started awarding emergency grants in the framework of the Emergency Support Fund for Key Populations (ESF). The activities of the Fund are financed by the Elton John AIDS Foundation and Aidsfonds. With these small grants AFEW International and Aidsfonds support organisations representing key populations in surviving in difficult situations which they face due to legal barriers, stigma and discrimination, financial challenges and political restrictions. Support is given to organisations carrying out activities that ensure access to HIV prevention, treatment and/or services for key populations, or projects protecting the human rights of key populations. The total funds available in the Emergency Support Fund is equivalent of the 750,000 pound sterling.

Today we are talking with AFEW International’s program manager Daria Alexeeva about the first results of ESF’s work, and what it takes to be awarded the small grant.

– What are the first results of Emergency Support Fund’s work?

– During this first phase, our main tasks were to set up the grant application process, the selection procedure and the infrastructure for receiving and qualifying applications. All three aspects were ready by December 1, 2018. The invitation to apply for a grant from the ESF was spread widely in the networks of AFEW, Aidsfonds and the members of the Advisory Board. In December 2018 AFEW International has established a system to administer grants to applicants. On January 4th the first meeting of the Operational Team took place to review first applications. Since December 1, 2018 we received 96 applications, of which 42 (44%) were approved for grants. The total committed amount by the end of March 2019 was Euro 235.000.

– What countries are applying to the Fund the most?

– The majority of applications came from Russia. We received 45 applications from the Russian Federation and awarded 22 applications. The next most active country was Tajikistan with 15 applications, and 7 being awarded. The third one was Ukraine with 16 applications, 5 of which were awarded.

– What problems do organisations address the most?

– More than half of the awarded grants are targeting people living with HIV (PLHIV) – 55%. One third of all awarded grants went to the projects which provide support to communities of LGBTI, and one third – to communities of men having sex with men (MSM). One third of the awarded grants support projects for people using drugs (PUDs). The equal amount of the awarded grants – 21% – supports projects for sex workers and vulnerable women.

– How does the Fund help to solve the problems organisations have?

– We are helping with a broad range of emergencies. We have several goals within the Fund. The first one is contributing to decline in the annual number of new HIV infections in Eastern Europe and Central Asia (EECA). The second goal is increasing access of everyone who is living with HIV in the EECA region to treatment. The third goal is full funding of the AIDS response in EECA.

Thus, we are funding activities, which contribute to these goals. Among the grants we awarded are projects aimed at the provision of harm reduction services, HIV testing and referrals for the treatment for difficult to reach populations (MSM, LGBTI). We have funded repairing mobile units for outreach work, purchasing milk formula to secure stock for HIV positive women. We support project working for disabled PLHIV making sure they are able to adhere to their treatment regimens, and projects which help prisoners getting access to testing and treatment, and to adhere to their treatment after they are released from prisons. Besides, there are projects organising trainings of the medical staff with the goal to form a tolerant attitude towards key populations, for instance, transgender people, in order to improve access and quality to health services and antiretroviral treatment. We also support advocacy activities to raise awareness of the needs of the key population and to call for the funding increase, for instance, provide legal support to cases of rights violation in prisons to generate evidence for advocacy. There are much more issues we support that are aligned within our three goals that I have mentioned before.

– What type of applications is being rejected by the Fund?

– Some of the projects are one-off events which are not carefully thought through from the sustainability point of view. For instance, conducting training for outreach workers without creating a system to support their work in the future. Besides, there are projects which are contributing to solving a real emergency situation. Some of the proposals are just weakly written. In all cases, we provide feedback and advice on how to improve the proposal if an applicant decides to submit again.

– What are ESF’s plans for the future? How many projects do you plan to support in 2019 and in the years afterwards?

– We plan to support at least 100 applications and maybe even more in the period till the end of 2020. We will continue supporting applications until the total funds that are available will be exhausted. We might be done in the middle of 2020 already. The amount of grants to be awarded depends on the size of the requested funds. In some cases, we allow a grant up to 10,000 euro, in particular when the project is contributing to solving situations which concern bigger groups of key populations or when the project is contributing to generating the evidence needed for developing prevention programs and advocacy towards national or local governments. When the emergency situation cannot be solved with 5,000 euro – then the bigger amount is awarded as well. We foresee a little fewer approved grants in the second quarter of 2019. By the way, there will be a summer break in the reviewing of applications from 8th July till 16th August due to holidays.

Anastasia Pokrovskaya: “Deportation of Migrants with HIV Leads to Criminalization”


Author: Oksana Maklakova, Russia

The government of the Russian Federation is planning to increase the country’s population by 5-10 million people, by attracting migrants from Ukraine, Kazakhstan, Uzbekistan and Moldova. This is what Russian policy-makers say. However, Russia is the only country in the Council of Europe which still deports foreign citizens living with HIV. Anastasia Pokrovskaya, senior research associate of the Federal AIDS Centre, says that introducing amendments to the relevant regulations could protect the health of many people and contribute to their decriminalization. As part of the Partnership Program, she was involved in drafting an expert report for a project to ensure migrant access to HIV treatment and abolish the provision on deportation of foreigners living with HIV who enter the Russian Federation.

How many migrants come to Russia and what is the rate of HIV prevalence among them?

– According to the Ministry of Internal Affairs, in 2018 Russia issued 1,671,706 labour patents to migrants. Those are people who enter the country legally and are officially registered with the relevant authorities. To get a labour patent or a permit to stay in the country for a period exceeding three months, medical examinations, including HIV testing, are mandatory. HIV prevalence is about 100 cases per 100,000 people tested. However, this number does not reflect the real HIV prevalence as some migrants, anticipating possible test results, avoid health check-ups. They come to the country illegally, get short-term visas without getting any patents, buy fake health certificates or send another person to be tested in their place. This law on deportation of foreigners with HIV creates many opportunities for illegal activity, both among migrants and among Russian organizations which offer migrants illegal services to help them get round the law.

Is this typical only for Russia? What’s the situation in other countries?

– Initially about 60 countries applied the rule: if you fall ill or cross the border with HIV, you have to leave the country. However, there are now only nine countries, including Russia, where such regulations still exist. Other countries, such as the United States, Armenia and Ukraine, abolished such legislation in the last 5-10 years.

What is the goal of your project?

– Our goal is to show why this approach should be changed in the first place; to demonstrate the demographic and epidemiological premises for abolishing deportation provisions. We have developed a document providing medical and legal justifications why we need to amend the legislation. We state that this provision should be repealed because it does not bring any benefits. Firstly, it is clear that it will not help us to end the HIV epidemic. In terms of new HIV cases we are ahead of many neighbouring countries from which migrants come to Russia. Secondly, in reality this law does not work anyway. People stay in the country, but go underground and continue living in the ‘grey zone’. As a result, they remain sick and infect others while their disease progresses, as they have no access to treatment. Meanwhile, they cannot go back to their home countries to get treatment because they are afraid they will not be able to return.


What is the current response to such challenges?

– There are some NGOs which help deliver services to such people. According to the law, we are not able to ensure comprehensive medical check-ups or provide relevant health assistance to migrants. The biggest challenge is that we are not able to provide them with antiretroviral therapy (ART). This is the biggest issue. Russian citizens can access ART free of charge. However, our government is not ready to allocate funding to treat foreigners, for obvious reasons.

So there are economic reasons for not abolishing the regulations?

– Probably. There are concerns about financial and administrative consequences. International agreements should be signed between governments. It is difficult for us to use the experience of other countries in addressing the issues of HIV and migrants, as the Global Fund to Fight AIDS, Tuberculosis and Malaria and other international charities which could take over some functions in this regard do not operate in Russia. Even if the country abolishes the regulation on deportation of foreigners living with HIV and such people get the right to stay in our country legally, they could still receive ART at home. All AIDS centres in neighbouring countries accept migrants who are registered for HIV care, and provide them with ART medications for several months. However, to get registered for HIV care, people have to leave Russia and then come back, which is currently not possible due to the travel ban on foreigners living with HIV. Thus, we will have to find our own solutions to this situation. There are some options currently being discussed, but it needs time. The final decision should be made by policy-makers, but unless they are informed about this issue they will not resolve it. We have to speak about it and suggest possible solutions. Only then could the laws be revised. I am sure that in our society there will be people who oppose such amendments, as they think migrants are bad for our country. However, those people often forget that migrants are a unique labour resource and in a way a demographic resource which modern Russia really needs.

AFEW International and Partners Start Implementing a New Project in Russia and Kyrgyzstan

Anke van Dam (on the right) and Daria Alexeeva presented the project in Russia. Photo: E.V.A.

Starting from January 2019, AFEW International began to implement the project St. Petersburg and Bishkek – Key Populations and HIV & TB Prevention Priorities funded through the Aidsfonds under the PITCH. The project covers key populations and HIV and tuberculosis prevention priorities in St. Petersburg, Russia and Bishkek, Kyrgyzstan.

PITCH is a strategic partnership between Aidsfonds and the Frontline AIDS (former International HIV/AIDS Alliance) working with those most affected by HIV: adolescent girls and young women, LGBTI, people who use drugs, prisoners and sex workers. The program aims to enable these groups to transform (inter)national HIV responses by strengthening their advocacy skills and capacities and promoting the innovative evidence-informed practice. This will contribute to cities in the Russian Federation and Eastern Europe and Central Asia (EECA) joining the fast-track city initiative and building political support for an HIV/AIDS response focused on key populations.

“Within this project, we are focusing on working with St. Petersburg and Bishkek and municipal level governments on HIV geographically-focused responses,” says AFEW International’s program manager Daria Alexeeva. “In this way, we are continuing our work we stared under the Fast-track Cities project in partnership with Alliance for Public Health where we are developing models of sustainable city responses to HIV and TB in key population in EECA that significantly contribute to achieving 90-90-90 HIV/TB targets for key populations.”

The project St. Petersburg and Bishkek – Key Populations and HIV & TB Prevention Priorities will work on several strategies: community based participatory research to reveal the most acute needs of the key populations, changing attitude of the decision maker towards key groups, involving key groups into the advocacy process, and experience exchange between the three countries, negotiations with the cities authorities on signing Paris Declaration and Zero TB Declaration.

Svetlana Izambaeva: “Uncovering the Topic of HIV, We Talk About Violence and Bullying”

Author: Olesya Kravchuk, AFEW International

Svetlana Izambaeva was one of the first women living with HIV in Russia who was brave enough to open her face. Now Svetlana supports other people living with HIV. In summer 2018, Svetlana Izambaeva’s Non-Profit Charitable Foundation held a gathering of adolescents living with HIV with the financial support of AFEW International and other donors. We talked with Svetlana to ask her what was interesting about this gathering in Georgia and why, when we talk about HIV, we also “uncover” other topics.

– Svetlana, could you please tell us how the idea of having a summer gathering was born? Who was able to take part in it?

– It started with our desire to support adolescents living with HIV in Kazan. Later those boys and girls, who had been participating in such meetings for five years, offered to hold a meeting with adolescents from other cities and countries. Several adolescents from Kazan dreamt about going to the seaside. Thus, those adolescents’ dream gave birth to our project #vseprosto (#itseasy). Before, we held one- or three-day workshops in the cities of Tatarstan, Ufa, Nizhny Novgorod, and Irkutsk.

We made a decision on the venue and started sharing information about the event through social media and AIDS centres. The response was immediate. We heard both from mothers of children living with HIV and from adolescents living with HIV. Every person who wanted to attend our event had to fill in a questionnaire based on which we selected the participants. An important eligibility criterion was the awareness of adolescent of his or her HIV status. This year, the meeting in Georgia brought together adolescents aged 11 years old and above from six countries – Russia, Ukraine, Armenia, Georgia, Belarus, and Kazakhstan – and nine cities of Russia – Vladivostok, Irkutsk, Ekaterinburg, Nizhny Novgorod, Kazan, Orenburg, Rostov, St. Petersburg, and Moscow.

– How was this gathering different from a traditional summer camp for children?

– Our gathering was more than a camp. We had full immersion into the topic of HIV, including all medical and psychological issues. Interactive games and quests help us to reinforce the theory. We raise the questions related to feelings, emotions, and experiences, explore guilt, resentment and pain, acceptance of diagnosis and empowerment. An important factor is that we offer many games on HIV – while playing, adolescents learn about the immune system and realize why they need to take pills strictly in accordance with their schedule. For some adolescents, this is the first time when they meet other boys and girls with HIV. At the gathering, we openly talk about HIV for ten days, which allows “recognizing” and accepting one’s diagnosis.

– What was your biggest insight during this gathering? Where there any good or maybe bad surprises for you?

– Each gathering has its own story and each one of them is special. Every time, we sit down with the team of trainers and prepare new exercises and new quest games for the adolescents. What is surprising is the depth of feelings and the extent of trust and openness among the adolescents living with HIV. They are all ready to work on their problems but not all of them are willing to do it in a group. From the very first day, we offer individual sessions with psychologists. Besides, one of the insights was that when we uncover the topic of HIV, we bring up deeper topics, such as violence, bullying, and reliance on parents. Parents or guardians may be a negative factor. There was a case when the guardian was not ready to work together all day long and also in the evening. We pay a lot of attention to building knowledge, but information is presented in the format of games and our participants have fun. Though it is just a five-minute walk to the seaside, our priority is keeping up with our agenda and the knowledge to be gained by the adolescents and their parents or guardians.

– What challenges did you encounter when planning the event and how did you cope with them?

– The main challenge was raising funds. We needed money to cover accommodation and meals for the participants, pay the trainers (though three times we did not pay either to trainers or to the logistics provider), to buy stationery, gifts, T-shirts and caps. It was important to have at least five trainers for 30 participants as we had both general activities and small group sessions. We had to find sponsors to cover our costs, and it was not easy. Besides, at our gathering we started training people who would like to conduct similar activities in their regions.

– Why is this event important? Have you achieved the goals that you wanted to achieve?

– This event is important for every adolescent – that is what they say in their comments and follow-up questionnaires. The changes happening with every boy and girl may be tracked through the diagnostic drawings that they do in the first and last days of the event. On the first day, when they are asked what they feel, think and want to do when they hear the word “HIV”, they draw scary images and write “pain, guilt, fear, do not want to talk about it.” On the last day, when answering the same question, they depict strength, confidence, freedom, easiness and desire to support their peers. The event is also important because after it they will not stop taking their therapy and will adhere to treatment. We already see the results of their blood assays. Our event is also aimed at the prevention of suicide attempts and depression.

Do you plan arranging similar events in future?

– We have already organized and held four gatherings: in 2017 – in Sochi and St. Petersburg, in 2018 – in Ureki (Georgia) and Vladivostok (Russia). We have piloted the programme, trained the trainers and we plan to launch such gatherings in Russia and open centres for adolescents in Irkutsk, Kazan, and Krasnodar region. Next year, we plan to conduct first-level training for new participants in each of the territorial units, hold a gathering in Irkutsk at the Baikal Lake and then – an international event in Armenia. Besides, we would like to hold a meeting and workshop in Moscow suburbs for a team of leaders from all our gatherings.

AIDS 2018: Will Decriminalisation Resolve the Problem of HIV

Maybe one of the most important sessions at the recent 22nd International AIDS Conference AIDS 2018 held in Amsterdam was the session, which raised the question why we still fail in responding to the epidemic among people who inject drugs. Participants of the session were able to consider this problem from the different points of view: science, law enforcement and community of people who use drugs.

Methadone is good for police

For over 20 years, Professor Nick Crofts from the University of Melbourne has been working to engage police in HIV response. He considers that decriminalisation is an absolute necessity to resolve the problem.

“We fail responding to the epidemic because we have failed to enlist police as partners in the response to HIV,” he says. “Changing the situation, first of all, requires changing the role of police, which will, in turn, help bringing the marginalized communities back to the society.”

In Australia, Professor Crofts and his allies were able to convince the police that such harm reduction programmes as methadone therapy and syringe exchange may benefit police as well as the rest of the community.

“We still have not introduced harm reduction courses in police academies, have not adequately educated police and have not fostered the role of peer educators, which is important not only in the traditional environment of activists, but also in such specific group as future or current police officers. Police officers may listen only to other police officers,” says Nick Crofts with a smile.

HIV for culture change

It is essential to find police officers who support the idea of harm reduction and educate them so that they can then educate their colleagues in relevant agencies.

“Find at least one or two individuals who want to do something different! Find them and give them your support!” exclaims Professor Crofts.

HIV may be a starting point to change the culture of the police. For a start, we need to engage the police, hold joint workshops with people from civil society and police, foster gender diversity in the police (to recruit more female police officers) and, finally, include harm reduction into the programme of police academies.

However, the Professor points out that it may sound pie in the sky talking about police in some countries.

“A third of them understand harm reduction, a third can understand and another third will never understand. Our goal is to find those people who understand or can understand it and work with them until they outnumber those who will never understand harm reduction,” he says.

“Narcotic ration” for Russia

Dr. M-J Milloy, the epidemiologist from Vancouver, tells about an interesting case, which occurred in his city back in the 1990s. Back then, there was already a large needle and syringe exchange programme in Vancouver and methadone was available. The epidemic among people who use drugs had successfully been curbed, but suddenly there was an unexpected outbreak of new HIV cases. How could it happen in a city with a well-developed harm reduction programme? It was explained with the fact that people could not access the necessary services when they were incarcerated.

Epidemiologists found out that incarceration was one of the key factors increasing the risk of HIV acquisition and one in five new HIV cases in Vancouver was a result of incarceration.

At the same time, experts estimate that in Russia every hour ten people are infected with HIV, while tuberculosis is the main reason of mortality among those who live with HIV. Most of them are people who inject drugs. The country does not offer evidence-based treatment to people who use drugs, i.e. there is no methadone, which, according to a recent statement from the Russian Ministry of Foreign Affairs, is a “narcotic ration.”

Fight, Hide, Unite — Where and Why?


Authors: Magdalena Dabkowska, Janine Wildschut and Aicha Chaghouani  

In the region of Eastern Europe and Central Asia (EECA), as well as in some Central European countries such as Poland and Hungary, the space for civil society appears to be shrinking. This seems to be a global process, but the EECA region seems specifically affected with many countries following Russia’s example in restricting the legal environment for civil society organizations. Central Asia has one of the lowest rankings on civil and political freedoms of the world (just behind the Middle East and North Africa). The rankings in Eastern Europe are also declining. These developments stifle the involvement of civil society in the region, endangering the further development of civil society and the protection of human rights in many of these countries.

The shrinking of civil space has a wide range of consequences for different kinds of NGOs. When it comes to drug policy or HIV-focused organizations, however, its after-effects may be even more severe. In most places, fields such as HIV prevention or combating the stigmatization of drug use fall to civil society groups and organizations serving the needs of vulnerable communities and marginalized groups—not only people living with HIV or drug users, but also sex workers or members of the LGBTQ community. These groups already face an unfavorable situation, as they deal with difficult, unpopular issues, connected with stigma and lacking any kind of social prestige. This situation already requires extreme dedication on the part of those struggling to defend or empower vulnerable groups, so that any additional challenges or burdens for these NGOs may undermine—if not eradicate—the effects of entire fields, such as working with those infected with HIV. Even more disturbingly, the HIV epidemic continues to grow, as the region on the whole has failed to meet the Millennium Development Goal 6 on combating HIV.

In 2017 AFEW International, the Netherlands-based secretariat of AFEW, an EECA regional humanitarian network, conducted an assessment to examine the extent to which decreasing venues for civil society threaten the effectiveness of the response to HIV and related public health issues (i.e. what is the effect on harm reduction programs for people who use drugs).

The assessment focused on the consequences of the shrinking space for civil society in the EECA region for community networks of people who use drugs, as well as harm reduction and drug policy NGOs. The study also looked at the strategies civil society develops and chooses while its space for agency melts away. The coping strategies were gathered in three categories or types of reaction named in the title of the study’s outcome report. The report, just published in July 2018, is entitled “We Fight, We Hide or We Unite: Coping strategies amongst resilient harm reduction organizations and community networks in the context of shrinking space for civil society in Eastern Europe and Central Asia”.

For the purpose of the assessment, the shrinkage of civil society was defined as “a tendency of governments in the region to exercise more control over civil society”. Civil society was understood as “the entire range of organized groups or institutions that are independent from the state, voluntary, and at least to some extent self-generating and self-reliant.” These would include NGOs, independent media, think tanks, universities, social groups, and religious communities.

Methods chosen for the study included desk research covering international and regional studies and overviews, an online questionnaire taken from the “2016 state of civil society in Europe and Russia” study by the EU-Russia Civil Society Forum, 17 semi-structured expert interviews, and group discussions held after preliminary analyses of the findings had been performed. They were designed to interpret the assessment from different perspectives and to link the theoretical and factual information with its practical implementation.

At the initial stage of the assessment, nine countries were examined, out of which 6 were selected for further review. These included Kazakhstan, the Kyrgyz Republic, the Russian Federation, Tadzhikistan, Uzbekistan, and—outside of the EECA — Poland. „Poland represents an exception. It was added because of the current dynamics vis-à-vis civil society,” states the assessment report.


Desk research (i.e., showed that the region can be divided into three groups of countries, taking into account their political regimes and the state of civil society in them:

  • countries with a very challenging environment for civil society;
  • countries with a challenging, but stable situation;
  • countries rapidly shifting from the comfort zone to a challenging environment.

In all of this, there is a dissonance between how external monitoring mechanisms define situations in these countries and how they rank civil rights and the positive freedoms citizens enjoy, and how HIV, harm reduction, drug policy experts and activists in these countries perceive their own situation.

Surprising results

On the one hand, the study concludes that the situation in the first group of countries can be summarized as very challenging due to limited political rights and civil liberties; oppressive policies that threaten the work and existence of civil society organizations, especially the ones opposing the authorities or dealing with unpopular topics; restrictive laws on foreign funding and international collaboration (i.e. Foreign Agents Law and Law on Undesirable Organizations in the Russian Federation or Law on Public Associations in Tajikistan) etc. Interestingly, on the other hand, only the representatives of civil society from the Russian Federation confirm they can clearly feel the environment as being hard and often dangerous not only for their work, but also for their personal safety. “No one is safe. I’m in the opposition. Maybe I’m paranoid, but they create such a situation that everyone must be scared,” an NGO member from Russia explained. A different image arises in interviews with activists and NGO workers from other countries classified by the monitoring tools as having harsh and very challenging policies. The NGO representatives from Kazakhstan, the Kyrgyz Republic, Tadzhikistan, and Uzbekistan do not feel the high level of anxiety one would expect under the consolidated authoritarian regimes in these countries. Similarly, in the countries where the situation can be seen as challenging, but stable, there is no noticeable expectation or worry among civil society of serious new threats emerging on the horizon.

The reverse situation can be observed in Poland. Although a democratic country and an EU member, it has recently experienced a dynamic decrease of freedoms and human rights and open society standards. Thus, Polish NGOs active in the field of drug policy, harm reduction, HIV/AIDS tend to see the state as less and less favorable or safe for non-governmental organizations. “Since the situation in new and changing rapidly, Polish respondents appeared more anxious than their colleagues from countries where conditions are much more difficult. Moreover, Polish NGOs face an increasing need to reshape their strategies and tailor their activities to this new, unpredictable reality,” we read in the report from the assessment.

We can conclude that the way NGOs and communities perceive their situation (as threatening or safely stable) does not depend exclusively on the strictness of national policies, laws and regulations. It is the combination of legal provisions and the overall political climate AND the dynamics of the changes (for good or for bad) observed at these two levels that influence how civil society defines their situation.

Three ways of coping with the situation

The assessment also examined how organizations dealt with the space for their activities melting away. Each of the numerous and diverse coping strategies identified can be seen as a part of one of the three broader attitudes: “Fight” (openly oppose authorities and the system), “Hide” (keep silent to prevent problems), and “Unite” (actively seek collaboration with the authorities).

The Fight category is defined by the study as containing “protest against general laws and policies, against punishing organizations and smear campaigns, whilst simultaneously standing up for the rights of individuals who use drugs”. “The FIGHT strategy is often found in countries where the situation suddenly and swiftly deteriorates and in countries where the civil society space remains quite limited and strictly controlled by authorities. In countries characterized by strict control, the majority of CSOs HIDE their opinions, although a small group of powerful activists and CSOs take huge risks whilst vocalizing strong positions and acting upon them.” Some of them conduct strategic litigation, including cases against the government (as in the Russian Federation, for example), others provide legal advice for community members free of charge, or share basic legal knowledge through peer-to-peer training. When it comes to controversial topics (and most issues related to drug use and HIV are perceived as controversial), it is easier and safer to express ideas, opinions and criticism through regional channels. Therefore, a decision to work regionally may be yet another example of the Fight strategy.

Of course, open opposition to the authorities can place NGOs at even greater risk as it often creates more oppression. This is why—as it has already been mentioned—the majority of organizations decide to hide, that is to operate silently and not to attract the attention of the authorities. This means either not mentioning or advocating openly for activities out of line with the ideas of the authorities or even ceasing with such activities entirely. In order to safeguard still-feasible projects, to protect and sustain organizations and its staff, and finally to be able to apply for state funding, NGOs often decide to reframe or rename the work they do (i.e. instead of mentioning their work addressed to the MSM—men who have sex with men—community, they refer to it as to men’s health activities; or they avoid a term “harm reduction” by calling the work they provide “preventing HIV”).  Another example of the “hide” strategy is changing the formal structure of the organization (e.g. registering it as a commercial entity), so it becomes invisible for the regime’s radar (and in result it cannot be, e.g., listed as a foreign agent).

To save the work still permitted, some NGOs decide to “unite” with the authorities. They perceive such compromises as the only way to anyhow influence the direction taken in the country and they hope this strategy will secure them a future place in discussions no longer permissible at present. They do so, for example, by offering trainings on health and HIV for governmental people, by participating in roundtables and consultation processes open to civil society, by delivering health services to hard-to-reach communities, and so helping the authorities to reach their health targets. However, this guarantees neither the safety of the organization nor the favorable conditions for its work. During the assessment process a few stories were collected that warn against too much optimism in this regard. One of them was shared by the representative of a donor institution:

“There is one example of an organization. They positioned themselves as a partner to the government and I remember very clearly a moment of great optimism when the then Minister of Health of Russia addressed a regional HIV/AIDS conference in Moscow to say that the government would be adopting harm reduction programs. However, when the time came for the government to do that, the plan changed and the government announced that it would be promoting healthy lifestyles and not adopting NGO programming. So, generally speaking I have to say that those attempts by NGOs to calibrate the confrontation in my mind have not resulted in a greater commitment by or support from the government in the region. I think that’s an important lesson.

The study shares coping strategies exemplary for each of the three groups listed, the necessary conditions for applying them, and finally—their advantages and disadvantages. This form of a review thus might prove useful not only in its own field but other related areas. It provides NGOs with the possibility for checking where actually they position themselves, to see the pros and cons of the position they take, as well as to evaluate the outcomes and consequences of that choice. As simple as it may sound, such an evaluation often proves difficult on a daily basis, but also could be extremely useful, since in most cases the coping technique chosen is not necessarily an outcome of a complex process of planning and strategizing. It usually is an ad hoc reaction to rapid and/or unexpected changes, opportunities or—on the contrary—attacks.

International donors

The outcomes of this study/assessment could also be informative for international donors. The shrinking space for civil society would not be that dangerous if not accompanied by a worrying trend of international funding institutions stepping back from the region. Their retreat (at least partial) from the EECA has been caused by a number of factors, including re-prioritizing and shifting their focus to world’s poorest regions; becoming ‘unwanted’ on the territory of the Russian Federation, for example, or being hit by regulations that aim to limit external funds in order to tighten control over civil society. Whatever reasons are behind the donors’ decision to limit funding in the region, the reality is they contribute to the worrisome situation of a reduction in HIV-related work provided by civil society. This is a field that governments are unwilling to support, be it for moral or for political reasons. Therefore, the lack of stable international funding independent from the authorities has a number of unintended, though severe consequences. The assessment included a few interviews with national and international funding institutions, which shed some light on their current positions and what donors envision for the future. It seems that not only NGOs, but donors also are now developing ways to cope with the shrinking space for civil society. “Some donors are more open and flexible, whilst others need to adapt both internally and externally to the political climate to enable funding for those civil society organizations that continue to operate.” Their efforts are a step in the right direction, but far more is needed if drug policy, harm reduction, and HIV/AIDS CSOs in the region are to survive.


On the basis of the findings of the study, a number of recommendations can be formulated, some addressed to donors directly, i.e. a call to re-strategize and develop ways to still “support CSOs in EECA through flexible conditions, by providing funding through other channels, by working less on the forefront as a donor to keep CSOs safe, and by understanding in which countries CSOs are attempting to survive and where sustainability cannot currently serve as a goal”. Donors should immediately provide emergency funding before the implementation of new strategies. They should also consider community involvement as equally important and support it in different ways. To raise donor awareness and to advocate for attention and financial support for civil society in the region, international solidarity is essential. This is why regional networks and the exchange of knowledge and ideas are necessary (not only among activists, but—equally important—among donors). In the end, it is they who make up the international community that is often in position to engage in the dialogue with the authorities from the EECA countries.

A number of recommendations can also be listed for CSOs and communities, based on what they shared in the process of the assessment. One of the conclusions from the analysis of the material gathered is that the legal framework for CSOs and the daily realities they inhabit may be very different and that “the sense of being involved or under threat are heavily influenced by the combination of strictness and change”18. Understanding “the tension of this sensitive interaction may help CSOs react to changes and threats in a manner that is less ad hoc, allowing them to adopt strategies that are more cohesive and strategic.”

The importance of solidarity among CSOs needs to be stressed nowadays, when organizations often are forced to compete with one another for limited amounts of funding from a limited number of sources. Today, NGOs often also play against each other, often demonstrating little understanding for others, who choose coping strategies and approaches towards the authorities different from their own. Respect and cooperation are indispensable and irreplaceable if the whole movement in the region is to survive.

Last but not least, taking into account the current developments in Poland, Hungary, and a number of other Central European countries that are now—intentionally or not—following EECA regional trends, it is essential “to include these countries’ CSOs in discussions, dialogues and exchanges when we examine civil society’s coping strategies.”


Invisible Epidemic of Hepatitis C in Russia

Irina Shestakova, chief external infectious disease specialist of the Russian Ministry of Health, photo by Oleg Kiryushin

Author: Anastasia Petrova, Russia

July 28 is the World Hepatitis Day. According to Irina Shestakova, chief external infectious disease specialist at the Russian Ministry of Health, the number of people infected with hepatitis C in the country may reach 5.8 million. Last year, only less than 0.2% of people with this disease received treatment.

Hepatitis C spreading to the “general population”

As estimated by the World Health Organization (WHO), about 71 million people globally are infected with hepatitis C. In 2015, 1.34 million of people all over the world died of hepatitis-related conditions. This is more than the number of AIDS-related deaths and is comparable only with the number of people who lost their lives to tuberculosis. The morbidity due to the consequences of hepatitis C continues to grow.

The incidence is also growing. Hepatitis C has long gone out of socially disadvantaged groups to the “general population.” The virus may be transmitted through non-sterile equipment in a dentist’s office, nail salon or during any medical surgery involving contact with blood. At the same time, affected by this severe disease, people often lack reliable information about the virus, not to mention the opportunity to receive effective treatment.

In Russia, it is difficult to access the therapy, while the regimens which are offered are not in line with the international guidelines and have side effects along with the low treatment success rates. Thus, the WHO recommends substituting pegylated interferon, which is widely used in Russia, with direct-acting antivirals (DAAs). However, the process of introducing modern treatment methods in the country is slow.

Thirteen times fewer patients treated

In 2017, only 0.2% of the total estimated number of people with hepatitis C received treatment in Russia. According to the annual report on hepatitis C drugs procurement monitoring in Russia in 2017 published by the International Treatment Preparedness Coalition in EECA, last year 9,661 people were able to access the therapy. This coverage is 13 times less than it is required to stop transmission of the disease.

“Low coverage is due to the low interest of the state. All the activities in response to hepatitis C are the initiatives of the regions. There is no targeted funding or actions to eliminate hepatitis at the national level. Another part of the problem is the pricing policy of the corporations, which are monopolists on the market. In our country, their drugs are protected by patents and they are free to set any prices they want to,” comments Sergey Golovin from the International Treatment Preparedness Coalition in EECA.

As estimated by the Coalition, the cost of therapy with DAAs varies from about 480 thousand to one million Russian roubles. In Russia, the cost of drugs is much higher than in Brazil, India, Argentina or Thailand.

“Many countries made a decision to eliminate hepatitis C. Developed countries offer treatment with modern drugs to all people who need it. In some developing countries, patent owners allowed companies to produce and sell copies of their drugs (generics) at very low prices. As for Russia, it got stuck somewhere between the developed and developing countries,” explains Sergey Golovin.

No action plan

Meeting of civil society experts in hepatitis C at EECAAС2018.

In 2016, the WHO approved the Global Health Sector Strategy (GHSS) on Viral Hepatitis for the period of 2016-2022. The Strategy is aimed at eliminating the epidemic of hepatitis by 2030 through the reduction of new cases by 90%. The document has been signed by all member states, including the Russian Federation. However, there is still no action plan at the country level.

For quite a while, representatives of patients’ organizations have been calling on the government to adopt a National Strategy on Viral Hepatitis, which should be adopted by Russia in line with the Global Health Sector Strategy on Viral Hepatitis and the World Health Assembly Resolution on Viral Hepatitis.

According to Aleksey Lakhov, Advocacy Officer of Together Against Hepatitis NGO, implementation of the Strategy will allow raising the awareness on viral hepatitis prevention and in general improving the system of epidemiological surveillance and control over hepatitis transmission in Russia.

Such Strategy should contain a set of measures aimed at improving hepatitis C diagnostics and detection as well as clear indicators of reducing hepatitis C incidence, prevalence, and mortality rates and covering patients with therapy based on the modern treatment standards.

We Fight, We Hide or We Unite

We Fight, We Hide or We Unite: coping strategies amongst resilient harm reduction organisations and community networks in the context of shrinking space for civil society in Eastern Europe and Central Asia

The title of this report, ‘We Fight, We Hide or We Unite’, reflects the survival strategies we identified amongst resilient harm reduction non-governmental organisations and community networks of people who use drugs (PWUD) in Eastern Europe and Central Asia (EECA). This assessment forms a part of the regional approach of the AFEW Network within the ‘Bridging the Gaps: health and rights of key populations’ programme, financed by the Ministry of Foreign Affairs of The Netherlands. This report presents the primary findings from the assessment, ‘Shrinking Space for Civil Society Organisations in Eastern Europe and Central Asia’, conducted between June and September 2017 at the international level by AFEW International and at the regional level.

We provide a detailed description of the overall study purpose, methodology, background and context regarding the shrinking civil society space and the coping strategies of HIV and PWUD CSOs working under these circumstances. The results of this assessment will be used to develop ideas and strategies on how to cope with the local contexts of the shrinking civil society space. In this way, it will contribute to the survival of CSOs and improving the current situation. This assessment represents the first step in the development of this focus within the AFEW Network’s regional approach within the ‘Bridging the Gaps’ programme. It will be followed by an analysis of existing gaps in the support necessary for specific interventions and initiatives to support specific coping strategies; the development of pilot projects on advocacy, service delivery or capacity building; and the continuous monitoring of results.

The full version of the report is available here.

AFEW International is Finding New Possibilities in Russia

Anke van Dam meeting with the representatives of the Fund for Resocialization of the Republic of Tatarstan

Author: Olesya Kravchuk, AFEW International

AFEW International continues looking for possibilities of helping key populations at risk for HIV, tuberculosis and viral hepatitis and community organisations in the Russian Federation. AFEW’s executive director Anke van Dam visited a couple of NGOs and community-based organisations during her recent visit to Moscow and Kazan.

In Kazan, Anke van Dam visited Fund for Resocialization of the Republic of Tatarstan. This fund for the first time in Russia successfully tested the model of purposeful employment of those who went through all stages of rehabilitation. For more than three years, the Fund for Resocialization offers employment to people who were using drugs, who are working on modern production of ventilation systems.

“What Daniyar, the director of the Fund for Resocialisation is doing, is amazing. He gives people with a history of drug use and sometimes of imprisonment as well, a chance to earn their own living again. With the job they regain their self-esteem, which helps them to get in touch with their family and participate actively in society again,” says Anke van Dam.

The Fund for Resocialization of the Republic of Tatarstan is engaged in the resocialization of people dependent on the psychoactive substances

The Fund for Resocialization of the Republic of Tatarstan, is engaged in the development and implementation of the state regional program for the resocialization of people who use drugs.

“It is resocialization that will allow us to establish new links with the society, to consolidate, to approve and apply the knowledge and principles obtained at the stage of rehabilitation in the social environment. We all know that for people who use or used drugs it is not easy to find jobs. They often have problems with their relatives, and some of them even do not have their own housing. Many of those who had treatment, again find themselves in the surrounding that provokes drugs use soon after they left the hospital,” states on the Fund’s website.