AIDS 2018: Engaging Young People who use Drugs in the HIV and Human Rights Response in Ukraine


Ukraine presented its experience in engaging young people who use drugs in the HIV and human rights response during International AIDS Conference AIDS 2018 in Amsterdam. Organisations ACO “Convictus Ukraine”, ICF “AIDS Foundation East-West” (AFEW-Ukraine), CF “Return to Life” and CF “KCF “Blago” shared the results of their work.

Club for teenagers

The main purpose of the activity in the framework of the PITCH project is to prevent the spread of HIV and other dangerous diseases among vulnerable adolescents and to develop healthy lifestyle habits, the director of “Convictus Ukraine” Yevheniia Kuvshynova is saying.

In their work, “Convictus” team is actively using mobile clinic where they provide services for teenagers. A multidisciplinary team is operating on the basis of a mobile clinic. The mobile clinic helps them to bring the services to those who are not covered with prevention and treatment programs. There is also a school of leaders and a Street power youth club, where teenagers can spend their leisure time and receive help from psychologist or social workers, get information, medical services, testing, etc. Around 500 teenagers received services in the club.

Accepted the monitoring tool

Iryna Nerubaieva

The project manager of the ICF “AIDS Foundation East-West” (AFEW-Ukraine) Iryna Nerubaieva shared the results of the piloting of the tool for monitoring the violations of human rights of most-at-risk adolescents which was developed and implemented in the framework of the project Bridging the Gaps: Health and Rights for Key Populations. From January till December 2017 in four pilot cities, 792 interviews with adolescents and youth aged 14-21 were conducted. 430 adolescents were 14-18 years old. The number of cases of human rights violations registered in an online form was 92 of all surveyed. A young activist of the CF “Return to Life” Daria Kopyevska, a social worker of the CF “KCF “Blago”Alina Khokhlova and a lawyer and AFEW-Ukraine’s consultant Vita Musatenko also shared their experience.

“It is good to see that teenagers realized why they need this tool, and how social workers accepted it. Now they know how that it will help in their work,” Vita Musatenko is saying.

According to the latest estimates, the number of most-at-risk adolescents is 129 000, including 21 700 injection drug users. However, there is no official data on the exact number of most-at-risk adolescents, including underage drug users. In Ukraine, most-at-risk adolescents represent a very closed group, thus the lack of statistical data, stigma, discrimination and legal barriers make their access to HIV/STI services more complicated.


Awareness and Acceptability of PrEP Among Men Who Have Sex with Men in Kazakhstan

Oral pre-exposure prophylaxis (PrEP) is an antiretroviral method of HIV prevention recommended to men who have sex with men (MSM) at high risk of infection. In Kazakhstan, which has one of the fastest growing HIV epidemics globally, PrEP is not currently available. The aim of this study is to explore the possibilities for PrEP initiatives in Kazakhstan by investigating awareness and acceptability of this prevention method among MSM. This mixedmethods study employs an online survey and qualitative interviews to describe PrEP awareness and acceptability. Less than half (39.8%) of survey participants had heard of PrEP.

However, a majority (85.2%) of MSM would possibly or defi nitely use PrEP if it was available. Awareness of PrEP was positively associated with willingness to use PrEP. The main reason to be interested in PrEP was an increased feeling of protection, whereas barriers were related to the idea of taking daily medication and the potential for side effects. PrEP is an essential component of HIV combination prevention. Our findings suggest potential for PrEP programmes among MSM in Kazakhstan and possibly in other Central Asian nations, when taking into account burdens of taking PrEP as well as more structural health policy issues.

Read more of the study here.

AFEW International Receives Grant from the Elton John AIDS Foundation

Sir Elton John during International AIDS Conference in Amsterdam

Author: Olesya Kravchuk, AFEW International

AFEW International received the Emergency Support Fund Manager grant from the Elton John AIDS Foundation. This news was announced during the 22nd International AIDS Conference in Amsterdam. AFEW has got this grant together with AIDSfonds.

Within this ‘Emergency Support Fund Manager” grant, AFEW will use its long-lasting expertise and history in grant-making and support to strengthen the capacity of Community Based Organisations (CBOs) and Non-Governmental Organizations (NGOs) in Eastern Europe and Central Asia (EECA) to overcome emergencies and to become stronger organisations.

Louise van Deth, Director of AIDSfgonds

“We are very honoured to receive this grant that will last three years,” says the executive director of AFEW International Anke van Dam. “Access to the treatment in Eastern Europe and Central Asia is a crucial need, particularly for key populations most at risk and people living with HIV. Unfortunately, not more than 30% of people living with HIV have access to the treatment. Stock outs of anti-retroviral treatment (ART) do happen, and the Emergency Support Fund is a great means to avoid this.”

AFEW will disburse emergency grants to enable key populations CBOs and NGOs in Eastern Europe and Central Asia to survive emergency situations and to be prepared or avoid emergencies in the future. NGOs and CBOs often deal with emergency situations due to a restrictive legal environment for key populations at risk for HIV, stigma and discrimination of those groups and a limited space to operate as a CBO and NGO.

AFEW Network at AIDS 2018

AFEW Network at the 22nd International AIDS Conference AIDS 2018 in Amsterdam, the Netherlands, July 23-27, 2018

Date Status Event title and type Place
21/07 – 22/07 Pre-Conference Youth

Empowermentand Validation

Roeterseiland Campus: Roetersstraat 1012 WX, Amsterdam


Affiliated event Theatre play in the framework of the

Teenergizerproject “Voices of Youth from Eastern Europe and Central Asia at AIDS 2018”

CREA Cultureel Studentencentrum – Nieuwe Achtergracht 170, Amsterdam


Affiliated event Roundtable: A person-centred response to the epidemic, Journalist Fellowship training RAI, Elicium Centre D203


Affiliated event Opening of ATLAS 2018 exhibition: I will speak, I will speak! Beurs van Berlage

Damrak 243, 1012 ZJ Amsterdam

22/07 Pre-Conference Meeting 90-90-90 targets is not the end of AIDS; Joep Lange Institute;

Mayors of Kyiv and Almaty


08:30 – 10:00

Open for public Walking the walk: youth movements to fight

HIV epidemic in Eastern Europe and Central Asia

RAI, Global Village


Open for


Art and Social Change: a dialogue with artists and social and health professionals on how culture and social initiatives can strengthen each other. Guided tour along the artworks with AFEW Culture Initiative lead Jan van Esch and and Ambassador International Cultural Collaboration Arjen Uijterlinde RAI, Global Village

ActivEast community zone 515



Open for public Artists Displaced at AIDS 2018: guided tours of the series of installations by the Artists-in-Residence (AiRs) and the project curator RAI, Global Village

ActivEast community zone

24/07 Open for public Strength in Resilience: Learning from key population communities in EECA confronted with shrinking civil society space RAI, Global Village

ActivEast community zone 515



Open for public Meet, Greet and Brainstorm on

Harmreductionand the EU Parliamentary elections 2019

RAI stand COALITION PLUS (exhibition zone)


Open for public Meet & greet RAI, Global Village, booth 509 (Prison Corner)


& 14:30-15:00

Open for public Artists Displaced at AIDS 2018: guided tours of the series of installations by the Artists-in-Residence (AiRs) and the project curator RAI, Global Village

ActivEast community zone



Open for


Panel discussion: Protecting people who migrate in countries of origin, transit and destination RAI Forum


Open for public Prison Health a Logic Choice: Key Implementation Factors RAI AFEW Office,

Amtrium2nd floor, above the entrance to the Global village



Open for


Panel discussion: Providing health services in prisons: addressing inequities, preventing and treating HIV and TB RAI UNAIDS Office Space, meeting room 2


& 14:30-15:00

Open for public Artists Displaced at AIDS 2018: guided tours of the series of installations by the Artists-in-Residence (AiRs) and the project curator RAI, Global Village

ActivEast community zone



open AFEW Network‘s Experience in strengthening community monitoring and involvement in service delivery: From

grassrootto policy level

Global Village, Eastern Europe and Central Asian Networking zone
26/07 10.30-11.30 open for public Strength in resilience: learning from key population communities confronted with shrinking civil society space AIDS Fonds Networking zone


open for public Bridging the Gaps: Health and Rights of Key Populations and PITCH. Engaging young people who use drugs in Ukraine in the HIV and human rights response RAI, Global Village, booth 509 (Prison Corner)


& 14:30-15:00

Open for public Artists Displaced at AIDS 2018: guided tours of the series of installations by the Artists-in-Residence (AiRs) and the project curator RAI, Global Village

ActivEast community zone



open for public HIV prevention, treatment and care in prisons activities in Eastern Europe/former Soviet Union countries RAI, Global Village, booth 509 (Prison Corner)


open for public Press moment: “Don’t let the prisoners behind” RAI, Global Village, booth 509 (Prison Corner)

16:30 – 18:00

For AIDS2018 delegates Workshop Migration in Eastern Europe and Central Asia: access to health care for all? RAI, E105-108

21:00 – 24:00

Open event AFEW Disco “From EECA with Love” Tolhuistuin – IJpromenade 2, 1031 KT Amsterdam


Open for public Artists Displaced at AIDS 2018: guided tours of the series of installations by the Artists-in-Residence (AiRs) and the project curator RAI, Global Village

ActivEast community zone

                                                                               Activities throughout AIDS2018
Date Status Title Place
22/07 – 27/07 Open for public Dutch Approach Booth RAI, Global Village
22/07 – 27/07 Open for public EECA Region Networking zone RAI, Global Village, EECA networking zone

ActivEast community zone, 515

22/07 – 27/07 Open for public Harm Reduction, People Who Use Drugs and Prison Health Networking Zone RAI, Global Village
23/07 – 27/07 Open for public The Walking History Corridor: Visualising the Mythologies of HIV/AIDS, the Caucasus and Beyond RAI, 812

corridor that is linking the Global Village with the main Conference Space

23/07 – 27/07 Open for public Transparent Dining: An Evolving Museum of Life Experiences, Social Commentary and Culinary Gatherings by and for Women Affected by HIV/AIDS in the EECA Region RAI, outside of the Global Village
23/07 – 27/07 Open for public Putting on a different lens: sex work, harm reduction and medical research in the Netherlands viewed through an artistic Eastern European and Central Asian lens RAI, Global Village – 823, time TBD


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.”


Stigma Affects the Motivation for HIV Testing

Author: Marina Maximova, Kazakhstan

As estimated by UNAIDS, 35 million people globally died of AIDS-associated diseases since the onset of the epidemic. People living with HIV die of tuberculosis, cancers, hepatitis… Meanwhile, there is no data on how many lives are lost to stigma. Today stigma is the strongest barrier for testing among those who are not aware of their status and for receiving services among people living with HIV (PLWH).

Migrant with HIV double stigma

Salavat Kabjalelov is an outreach worker and a peer consultant in the Zabota (‘Care’) Charitable Foundation. He helps labour migrants: offers consultations on HIV, tells about the need to get tested, navigates clients for diagnostics to the AIDS Centre and to the tuberculosis clinic. Salavat can find the right words for every client. He had no citizenship or registration, no access to antiretroviral treatment (ART) and he wanted to hide not only from his problems but also from hostile stares and rough remarks of people around him.

Salavat Kabjalelov

He and his wife lived a quiet life, not seeking medical care. For migrants, the main thing is their job, not their health. Then, three years ago something tragic happened. Salavat lost his wife. The young woman died of cancer.

“I tried to arrange hospice care for my wife. I was even ready to pay for it, but it was not possible. They refused me. She was living with HIV. It appeared that it was more important to be a citizen. If you had a severe disease, it was not an argument. The good news is that now the situation in Kazakhstan is improving and migrants with HIV will be provided with ART. However, it will not bring my wife back,” complains Salavat.

Everyone goes through self-stigma

Lyubov Chubukova

Lyubov Chubukova works in the Kazakhstan Union of People Living with HIV. She is a delicate woman of strong character, who can convince people both from the tribunes of international forums and in one-on-one arguments. Twelve years of living with HIV made her a leader. She experienced stigma in a private health centre where she came when she got pregnant – young and confused. An older woman gave her an advice – to seek health services only in the AIDS Centre. However, Lyubov says that her self-stigma was even stronger. Every person who learns about having HIV faces this problem.

“I no longer consider myself a victim as it makes it impossible for me to live and grow. Good support in fighting self-stigma is trusting people and knowing your rights. You have to live on, not restricting yourself, and overcome your fears. Otherwise, you may reach the worst point,” says Lyubov.

Lyubov does not hide her status. Vice versa, she often takes part in TV shows and open discussions as an expert. She is convinced that stigma affects the motivation for HIV testing. People are afraid to get tested for HIV as they are worried that their test may come back positive. At the same time, if a person living with HIV starts the therapy too late, the probability of treatment success is much lower and it can even lead to death of the patient.

Every tenth person living with HIV has suicidal thoughts

Three years ago, the Central Asian Association of People Living with HIV within the Leader of People Living with HIV Project funded by USAID for the first time in the region carried out a survey to assess the index of stigma in three Central Asian countries – Kazakhstan, Kyrgyzstan and Tajikistan.

Results of the study in Kazakhstan showed that every tenth person living with HIV had suicidal thoughts. PLWH aged 30 and above suffer most from self-stigma as well as people with small (one to nine years) history of living with HIV. Self-discrimination mainly leads to the decision not to have any more children. Every third person living with HIV in the country makes such a decision.

The study demonstrated that the experience of injecting drug use as well as the experience of imprisonment were the drivers of stigma towards people living with HIV. Most often, PLWH faced discrimination from the side of health workers (first of all, refusal to provide health care) and public officials, while discrimination from the side of their immediate social environment was far less common. Moreover, the cases of discrimination were accumulated in the first ten years of a person living with HIV.

No silence about stigma

Baurzhan Bayserkin

The first step in overcoming stigma is to break the wall of silence. Approval of regulations at the country level is a real victory. In the beginning of the year, the National Plan to Fight Stigma and Discrimination against People Living with HIV was approved in Kazakhstan.

“Stigma and discrimination related to HIV status are the major barriers for PLWH to access prevention, care and support services. To end the spread of HIV, a focus should be made on the complete eradication of discrimination, first of all in health institutions. It will allow achieving a significant reduction in the growth of HIV epidemic,” says Baurzhan Bayserkin, General Director of the Republican AIDS Centre.

Kazakhstani are going to continue this discussion at the 22nd International AIDS Conference in Amsterdam AIDS 2018.

IVF for Women with HIV in Ukraine: Bringing the Right to Have a Child Back

Svetlana Moroz (second on the right) discusses the elimination of the discriminatory norms at a round table. Photo by Positive Women NGO.

Authors: Yana Kazmirenko, Tamara Balayeva, Ukraine

In Ukraine, amendments are prepared to the regulations of the Ministry of Health (MoH) prohibiting in vitro fertilisation (IVF) for women living with HIV. Currently, HIV is in the list of diseases, which are contraindications for IVF, approved by the MoH. In Western countries, IVF has been successfully delivered to women living with HIV for a long time. Ukrainian activists strive for the prohibition on in vitro fertilisation for women living with HIV to be abolished.

In early July, a round table discussion was held in the Public Health Centre at the MoH. At AIDS 2018 in Amsterdam, activists are planning to meet with Ulana Suprun, Acting Minister of Health of Ukraine, to present their insights and explain why it is so important to abolish the outdated regulations.

Discrimination and self-stigmatization

There is no statistics on how many women living with HIV apply for IVF in Ukraine every year and are refused. Svetlana Moroz, representing the Positive Women NGO, sent relevant requests to 10 regions. So far, there have been no replies. Svetlana says that information about the attempts of women living with HIV to make IVF is shared only among civil society activists.

A woman with HIV status sought help in their organization. After long searches, she found a clinic in Kharkiv, which was ready to work with women living with HIV

“She made two attempts, which have not been successful so far. Another woman from Sloviansk used her advice and also sought assistance in this clinic, but she had a miscarriage,” tells Svetlana.

She says that some private clinics agree to make IVF to women living with HIV but do not advertise it due to the orders of the MoH. Such clinics charge their clients a double price because of the possible risks. Other health facilities use standard excuses: lack of equipment or reference to HIV being on the list of contraindications for IVF.

Apart from the MoH orders and reluctance of clinics, there is another barrier – self-stigmatization. According to Svetlana Moroz, many women living with HIV do not even try to seek assistance in IVF clinics: they know that they will face a refusal or do not know that they even have such a right.

All IVF risks are myths

Valentina Kvashenko, chief physician of the A.A. Partners Health Company also thinks that refusal to make IVF to HIV-positive women is a discriminatory practice and that concerns about the risks of HIV transmission are ungrounded. Doctors carry out all the manipulations with semen and eggs with disposable catheters and needles. In the course of deliveries, they wear gloves, glasses, and aprons. The same safety precautions are used during all standard deliveries. Usually, only one embryo is transferred to women with HIV status to reduce the potential need of invasive interventions.

“There is no need in “prohibiting” regulations, due to which people are not able to perform their reproductive functions and become parents,” says Valentina, adding that HIV may be transmitted from mother to child, but only if the woman is not taking antiretroviral therapy (ART).

She gives statistics to prove her words: in 1996-1997, when there was no access to antiretroviral drugs in Ukraine, HIV was transmitted from mother to child in 60% of cases. Now this rate is less than 10%. Even this percentage only relates to children born to women who do not receive ART. Besides, the IVF procedure reduces the risk of virus transmission to a minimum.

Litigation for the right to IVF

If the letter to the Ministry of Health will not give a result and will not allow to promptly introduce amendments to the regulations, the activists have a second option – legal action.

“We will work on creating a legal case. The fact is that the MoH regulations contradict the laws of Ukraine, which do not prohibit in vitro fertilization for HIV-positive women. If nothing else works, we will find a woman living with HIV who is ready to go all the way and defend her rights in court,” explains Svetlana Moroz.

It is expected that draft amendments to the regulations will be ready and presented to the Ministry of Health in late November. While the old regulations are still in force, Svetlana gives recommendations to women who are refused the IVF services.

“Always demand official refusals. With the doctor’s words only, you will not be able to file a lawsuit in court and all the more to win it. Secondly, seek assistance in human rights organizations. For example, our organization is ready to provide free lawyers’ services to women, help them to prepare the required documents and in general offer all the necessary legal support,” sums up Svetlana.

After the discriminatory regulations are abolished, Ukrainian women living with HIV will have a right to participate in the state-funded IVF program for childless couples.

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.

Children with Tuberculosis and HIV Do Not Have Access to Education in Tajikistan

Children with HIV and TB do not have access to education in Tajik schools

Author: Nargis Hamrabaeva, Tajikistan

10-year-old Zarina (the name is changed) is from Dushanbe. The girl has a double diagnosis: HIV and tuberculosis. Zarina has never studied anywhere.

Her mother learned she was HIV-positive during the pregnancy. She received her HIV-positive status from her husband. The girl’s father died of AIDS several years ago, and her mother got married again. The stepfather did not accept Zarina, and that is why she lives with her grandmother.

When Zarina turned seven, the grandmother sent her to the first grade in one of the schools in Dushanbe, but the director said the school could not accept the girl, explaining that “she was sick and could infect other children with tuberculosis.”. Therefore, Zarina has not been studying anywhere for three years. The guardianship and trusteeship bodies never asked why the girl did not go to school.

The dialogue that never happened

Human rights activists found out about Zarina’s case and tried to help the family. The representatives of the Tajik network of women living with HIV and the public fund Your Choice approached the officials of the Ministry of Education to find out whether there was a mechanism for providing access to education for such children, but they faced a wall of misunderstanding.

“We were asked to leave the office. The Ministry representatives said that we lied, that there were no such cases, that all children were receiving education, and that we, representatives of non-governmental organizations, only traveled abroad and tarnished the country’s image before the international community. The dialogue never happened,” says Larisa Aleksandrova, representative of the public fund Your Choice.

According to her, children with a double diagnosis of HIV and tuberculosis do not have access to compulsory secondary education in Tajikistan.

“The revealed fact confirms that education officials improperly monitor and keep track of children who do not attend school due to tuberculosis, and they also do not provide these children with the opportunity to receive education at home, the so-called family form of education or homeschool. Although, according to the Health Code, the authorized body in the field of education is obliged to develop programs for getting education at home or in the hospital,” says Larisa Aleksandrova.

With discrimination and without statistics

Larisa Aleksandrova, representative of the public fund Your Choice

The human rights activists are sure that Zarina’s case makes the situation with discrimination of children living with HIV in an educational institution clear.

“The Law on education states that educators should keep track of children of preschool and school age, and monitor their education prior until they complete the compulsory education. In Tajikistan, a nine-year education is compulsory. However, the Law does not define the mechanism for identifying children not covered by compulsory education,” says Larisa Aleksandrova.

The number of children with tuberculosis and HIV who do not have access to education in the country is not known. The Ministry of Education of Tajikistan said that they do not keep such statistics.

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.