A chance to be heard

Participants from Kazakhstan with AFEW International

Participants from Kazakhstan with AFEW International

Stigma and discrimination are recognized as some of the most commonly identified barriers to fight the tuberculosis (TB) epidemic. Reducing TB stigma is essential because it hinders care seeking, contact tracing, outbreak investigations, treatment initiation, adherence and quality of care. Moreover, it deprives people with TB of their rights and the respect of others.

In collaboration with partners on global, regional and national levels, KNCV Tuberculosis Foundation has developed two stigma reduction packages within TB Photovoice project and piloted them in communities and health care facilities providing TB and TB/HIV in Kazakhstan, the Philippines and Nigeria, funded by the Dutch Ministry of Foreign Affairs.

In Kazakhstan the initiative was implemented by AFEW-Kazakhstan, Sanat Alemi, and Doverie Plus.

For reference

Kazakhstan is one of the 20 high-burden countries for multidrug-resistant TB (MDR-TB). The country has made great progress towards eliminating TB in recent years, with diagnosis, successful treatment and notification rates exceeding the WHO recommenrdations and the estimated incidence.

In may 2018, 12 professional participated in a “Training of trainers” course to learn how to implement TB Photovoices, 9 of whom facilitated the intervention with patients in the end. The group included 6 psychologists, a social worker and a doctor

The TB Photovoice intervention was implemented with 9 (ex-) TB patients – with a mixture of drug-susceptible and drug-resistant TB – some of whom were still on treatment at the time.

The final products (photos, quotes and stories) were launched and shared with the broader Almaty community in advocacy exhibitions and were also reproduced into banners, desc calendars, bads, T-shirts, and postcards to use in heath facilities when counselling new TB patients.

Symbat Sapargalieva, social worker of Sanat Alemi NGO, participant of the PhotoVoices Project

When I found out that I had tuberculosis, I felt so ashamed. There were many negative thoughts in my head. I denied my disease and was pulling away from my family and friends.

I was happy to take part in the PhotoVoices Project and then realized that I have a self-stigma. This project helped me to understand that my friends did not turn their backs on me, it was me who isolated myself from them. There was an exercise called Lifeline with TB, when I had to write down all my negative and positive thoughts. I wrote down only negative ones as I could not find any positive sides of the disease. However, two weeks after I was able to find something good about TB.

I mean, when you realize your problem deep inside and bring it out, it is such a relief. After a while, I set some goals for myself and got a job with a civil society organization to help people who were the same as me. Half of my dreams have already come true!

The main thing I realized is that if you want to change people’s opinion, change yourself. The PhotoVoices Project gave me my voice and a chance to be heard.

Sholpanata Kaldarov, student of the International IT University, participant of the PhotoVoices Project and the Self-Stigma Project, volunteer of Sanat Alemi NGO

When I was invited to take part in the PhotoVoices Project, I was still receiving my TB therapy. I said yes right away as I thought that photos could somehow provide psychological support and motivation to people who just learned that they had TB and also myself, of course.

When I was found to have TB, doctors checked everyone I had contacts with. I felt worse not even because of my own diagnosis, but because all people who were in contact with me had to be checked. Back then, I lived in a student dormitory, and even though my form of TB excluded the transmission of infection, doctors still checked about 100 students from the dormitory and 20 of my group mates. Afterwards, these people had to come to the clinic for special medical check-ups every six months. I felt guilty, so I gradually pulled away from my friends. I had self-stigma.

In the PhotoVoices Project, I experienced a lot of emotions. Before the photo is taken, you remember your past and drag the disease through yourself again. In the beginning, it was difficult to focus on details, but then I felt better and learned to openly talk about my disease.

In our group, there were patients, who already completed their treatment. Talking to them, I heard how they were able to overcome the disease. Gradually, I felt confident that I would also be able to finish my treatment successfully.

I want to thank this project, it really helps the patients who isolated themselves after the disease and lost their self-esteem.

Amanzhan Abubakirov, Teaching Assistant at the Phthisiopulmonology Department of the Kazakh National Medical University named after S.D. Asfendiyarov

Once, the head of our department invited me to take part in a project on stigma. I heard the term “stigma” before, but to be honest did not really know how it can be manifested and how it affects people. It was something new for me, so I agreed to participate.

In the course of the project, I realized that for a long time I was stigmatizing both myself and my patients. Sure, I was kind to them and treated them well, but I thought that I was a doctor and that I was better than them. I have to admit that I feel so ashamed for it.

During the project, we took part in such exercises as “Our Imperfection – Their Imperfection”, “Cross the Line” and so on. Thanks to such exercises, we were able to feel what patients feel, we were able to be in their shoes.

This project really changed my perspective, my view of the world. As a result, I built friendly relations with the patients who stay in our hospital for a long time. I stopped using any terms, which can stigmatize the patients.

More often, I talk to the patients’ relatives, tell them about stigma and ask them to provide more support to the patients.

Besides, I talk to the medical staff working at our department. As I also work at the Medical University, I devote special hours during my classes to talk about stigma and discrimination to my students.

I want to deliver the message that all people are equal, no one is better or worse. However, people with TB are real heroes. Every day, they take a lot of medicines with numerous side effects. Their spouses leave them, their friends turn their back on them, but they continue their fight.

Thank you everyone who fights TB!

 

 

 

 

 

Russian NGOs adopt the experiences of the Netherlands

How do Dutch NGOs fundraise? What are alternative financing models? How to look for sustainable sources of income for NGOs through corporations, private donors, and through social entrepreneurship?

For answers to these and other questions, representatives of Russian NGOs went to the Netherlands. They took part in a study tour organized from 10 to 12 February in Amsterdam by AFEW International. A study tour for representatives of Russian NGOs was held as part of the EU-Russia Civil Forum and the program “Bridging the Gaps: Health and Rights for Key Populations”.

Representatives of such organizations as Aidsfonds, Mainline, De Regenboog Groep, Dance4Life, as well as the Amsterdam Dinner Foundation shared their experience with the participants.

Nowadays traditional methods no longer satisfy the needs of Russian NGOs, which face great difficulties in obtaining international institutional funding and whose needs cannot be covered by available domestic funds. Thus, alternative funding may lead to less dependence on traditional institutional donors.

The purpose of this study tour was to become familiar with alternative financing models. Participants learned about the new experience of Dutch NGOs and gained knowledge on 7 financing models that do not involve receiving funds from institutional donors.

We Need to Talk about Chemsex!

Gay people, sex and drugs are a taboo in Russia. Despite the fact that those topics are usually not discussed, chemsex is gaining pace in the society.

Maksim Malyshev, Social Work Coordinator at the Andrey Rylkov Foundation, told AFEW International about the problem of chemsex, the rudiments of harm reduction in Russia and the mental health of people engaged in chemsex.

How widespread is chemsex in Russia?

It is a difficult question as so far there have been no studies on the prevalence of chemsex in Russia. Based on my personal observations, I can say that it exists and gains popularity over the time. Firstly, it is a global trend. Secondly, drugs are easily available in Russia through the dark net. Thirdly, discrimination and stigmatization of the vulnerable communities, in particular LGBT people, lead to the growing pressure on the community members, so they are more tempted to get isolated and engage in new destructive experiments.

Is chemsex a problem of big cities or does it also exist in smaller towns?

Mainly, it is a problem of metropolises – Moscow, St. Petersburg, maybe Ekaterinburg, Rostov and Krasnodar. It is important to understand that big cities are the centres of the gay community. Gay people from all over the country come to such cities because it is easier for them, they are not so stigmatized, there are more opportunities and a bigger community there.

Why is chemsex mainly the problem of gay community?

Of course, sex and drugs exist not only in the gay community, but also in heterosexual and transgender communities. However, I as well as many other experts in this sphere stick to the classical concept of chemsex and associate it specifically with the gay community. This community is affected by all the factors, to which chemsex can be related. I mean minority stress, stigmatization, and peculiarities of self-identification (where sex is an important element). In transgender communities, there are also drugs and sex, and for many transgender sex workers drugs are the way to survive, respond to their personal problems, depression, etc. This is only my personal opinion, of course, and I cannot speak for those communities.

What are the key issues caused by chemsex?

There are four key issues: HIV and sexually transmitted infections, mental health, the problem of choice and violence and loneliness.

When people engage in chemsex, their sexual activity intensifies, substances enhance their libido and endurance, leading to the growth in the number of sexual intercourses and partners, while their ability to control the important things goes down. People do not use condoms, their sex becomes more traumatic, their sensitivity threshold is reduced, while the level of energy and aggression goes up, which altogether leads to the higher risks of HIV and other infections.

Talking about the mental health problems, it should be mentioned that after chemsex people feel lonely and exhausted. In Russia and Europe, people engaged in chemsex use the substances, which have a negative influence on their mental health, so that it is more difficult for them to be mentally stable. They grow addicted, so when people stop taking substances, usual sex feels dull to them. The situation is aggravated with the repressive drug policy and fear of people to draw the attention of police and criminals, becoming the target for blackmailing.

Are harm reduction services available to people engaged in chemsex in Russia?

Now, we only have some rudiments of such services in Russia. For instance, Andrey Rylkov Foundation which was recognized as a foreign agent, implements outreach activities at the techno parties for gay people. We distribute condoms, lubricants and test people for HIV. Besides, we organize self-help groups for people affected by chemsex. Such groups meet on a regular basis. We also focus our efforts on providing psychological support to people affected by chemsex. AFEW International really helped us by supporting the project allowing our outreach workers to visit techno events. We procured condoms and lubricants within the ESF grant. This grant gave a big impulse to develop our activities.

I know another Russian organization, which opened an NA group for the gay community members. Those are all the services available for now. That is why our foundation together with Parni Plus NGO submitted a joint proposal to the Elton John AIDS Foundation to develop our project aimed at the gay community in the context of chemsex.

What services are to be developed in your opinion?

Now an interesting survey is carried out in the gay community, with the community members telling about their problems, ways to resolve them and share their preferences. Hopefully, we will soon see its results.

As for my personal perspective, I think that more efforts should be definitely aimed at the gay identity, so that people can identify as gay, so that they can open up. It is important for people to accept themselves, come out to their family and friends, and build contact with them. Lack of self-identification is a vital reason why people engage in chemsex. However, it is not possible to implement such activities in Russia as they fall under the concept of gay propaganda.

There should also be a bigger focus on harm reduction services. What we can do now – outreach visits to saunas and apartments to meet the community members – is not enough. It would be good to have a needle and syringe programme. However, many event organizers are afraid to implement such measures as they can draw the attention of police.

I also think that it is important to open rehabilitation centres for people affected by chemsex. Today there are no places where we can refer those people! Even if they are ready to pay for the services. All the rehabs are aimed just at people who use drugs, where there is no tolerance to the LGBT community members.

Still, are you able to create some printed or online materials under such circumstances?

Yes, there are some things that the activists do. For example, a comic book on chemsex has been published. It will be distributed in clubs. There is also an anonymous website, where LGBT community members can find the information on harm reduction and rehabilitation.

What was your biggest impression lately?

There was one case, which startled me not so long ago. There was a guy, who came to our foundation with his story. Some people he met invited him to have sex in a park after using some mephedrone. When he came there, he saw that his new “friends” had wristbands and a club. They took him to some strange venue, where there was a corpse lying. The guy was frightened and managed to escape somehow. He told us that afterwards he was ready to call the police and file a complaint against those men. But then he was too afraid. He was afraid that the police would not believe him, afraid that he would be arrested for using drugs, afraid that he would lose his job, would be registered with the police and would become a victim of jokes because of his sexual orientation.

I really hope that one day this situation will change. What we are doing now is a step into the future.

 

 

 

IT’S TIME

24 of March is a World TB Day 2020.World TB Day is a big moment to sound the alarm, raise attention, and tell world leaders to follow through on their promise to diagnose and treat 40 million people with TB by 2022, as agreed at the UN High-Level Meeting (UNHLM) on TB in September 2018.

We all need to work together now on important activities to make sure that World TB Day 2020 is the biggest and most effective.

What we together can do?

  • REACH OUT
    Reach out to your political leaders (Mayors, Parliamentarians, Ministers of Health, Heads of State) to request their leadership in the fight to END TB, remind them of the commitments and targets that have to be reached by the end of 2022, and request their engagement for World TB Day. This could include making a public statement, supporting an event, introducing a motion in parliament, or committing to achieve the UNHLM country targets.
  • GET SOCIAL 
    The hashtags for this year’s World TB Day are #ItsTimetoEndTB and #WorldTBDay. Start raising awareness through social media. Share your plans with us on Twitter or Facebook.
  • MAKE IT STARRY
    Reach out to celebrities, influencers, TV personalities, and other figures to ask them to join your efforts and raise awareness or wear a red arrow pin ahead of World TB Day. Stop TB partnership has a list of national celebrities, journalists and personalities that we can share with you case by case, so don’t hesitate to get in touch with us to get their contacts.
  • TEAM UP
    Team up with local TB partners to join forces in planning major World TB Day events, public mobilizations, and other activities. Stop TB partnership have a database of partners at country level – so do not hesitate to get in touch with us to be able to identify the partners with whom you want to work for these events.

Text – http://www.stoptb.org/

AFEW International in Uzbekistan

AFEW International represented by Daria Alekseeva, Program Director and Yuri de Boer, Senior Program Manager, and Ainura Batyrbekova, Project Manager of AFEW Kazakhstan concluded a scoping mission to Tashkent from 15-17 January.

At the invitation of the Ministry of Health and with the support of the Ministry of Foreign Affairs of Uzbekistan, the team met with the Republican AIDS Center and the Municipal AIDS Center of the City of Tashkent, the Country Coordinating Mechanism (CCM) on HIV/AIDS, international organizations, as well as a broad range of community based organisations, including networks of people living with HIV.

At the center of the discussion are several proposed interventions to further develop and improve the quality of HIV testing and prevention services for key populations and support to people living with HIV. The overall aims of the proposed projects is to strength the role of civil society and key populations in inclusive health care in Uzbekistan, in particularly in motivating the most difficult to reach groups to get an HIV testing,  and to further strengthen the capacity of AIDS Centers and service providers. During the meetings, all parties involved acknowledged the need to keep focus particularly on key populations (people who use drugs, men who have sex with men, transgender people, and sex workers) and use the expertise of the AIDS Centers as well as the community organizations to better access these groups. Optimized ART adherence for people on treatment was also seen as a possible outcome of joint interventions.

In the coming months, project proposals will be further developed, and formal endorsement from governmental stakeholders and the CCM will be sought.

AFEW International has already supported projects for people living with HIV in Uzbekistan, and actively involved participants from the country in the AIDS2018 conference. In addition, representatives from Uzbekistan participated in AFEW International’s community based research education project.

 

The Knowledge Not Available Before

In 2018, AFEW Kyrgyzstan started training the doctors of family health centres and maternity clinics in providing assistance to the pregnant women who use psychoactive substances (PAS) within the project “Bridging the Gaps: Health and Rights for Key Populations”.

Fear of judgment

According to the assessment held in 2014 within the project supported by the Global Fund to Fight AIDS, TB and Malaria, the number of people who inject drugs in the country was 25,000 people, 12% of them being women. Besides, another study showed a rapid growth in the number of pregnant women with HIV.

Women who use drugs usually seek medical assistance less frequently than men. The reason for it is their fear of judgment and discrimination, fear to lose their children. In 2016, AFEW Kyrgyzstan and a group of experts with support of the project “Bridging the GapsHealth and Rights for Key Populations” developed an action plan for women who use psychoactive substances to provide comprehensive and timely support to such women. In the beginning, guidelines for doctors and nurses were developed called “Management of Pregnancy, Labour and Postpartum Period in Women Who Use Psychoactive Substances”. Besides, AFEW Kyrgyzstan together with experts and community members organized workshops for the doctors of family health centres and maternity clinics in Bishkek and Osh and introduced a training module in the post-graduate education of health workers. Monitoring of the knowledge using such guidelines allowed identifying a big gap in the level of knowledge between the doctors from Bishkek and Osh. There can be various reasons for such situation, but the decision taken as a result of the monitoring was to support the activities of a multidisciplinary team led by the Podruga Charitable Foundation to provide quality training to the health workers in Osh. Such team was created with support of AFEW Kyrgyzstan and the project “Bridging the GapsHealth and Rights for Key Populations”.

Fighting stigma and discrimination

Since March 2018, the multidisciplinary team trained 72 doctors in all family health centres and maternity clinics in Osh. According to Irina who is a social worker at Podruga Charitable Foundation and the project coordinator, when most health workers come to the workshops, they lack trust. They say: “We do not have any female patients who use drugs, and even if there are some, why do we need to treat them – they can be just sent somewhere, and that’s it”. “Usually, women do not tell doctors that they use drugs, they are afraid to say that they have HIV”, says Irina. “As for the doctors, they do not pay attention to it. However, pregnant women living with HIV require a special approach to avoid possible complications and to make sure that mothers-to-be are not afraid to seek medical assistance and get tested. The truth is, though, that after the training most of them change their point of view”.

Before start, all the training participants fill in questionnaires. The results are not so brilliant – the average score is 5-7 correct answers out of 20. After they complete the training, the results are much better: most health workers have not more than one incorrect answer or make no mistakes at all. “I am very happy that after the workshops doctors at least start noticing that there are women who use PAS among their patients. Now, if an HIV-positive woman or a woman who uses PAS comes to them, they often call me or the trainers, we look at her case and try to help every woman. That’s how lives are saved”, smiles Irina.

To a great extent, the training is effective due to the fact that doctors with extensive experience are part of the multidisciplinary team. Each of the trainers is a role model and a real expert. Thanks to the trainers’ reputation, the participants are more willing to listen to them and agree with them. That is how the ice of misunderstanding and ill treatment is broken.

Gradual improvement

It should be noted that the project helps the health workers to work not only with pregnant women. Nadezhda Sharonova, Director of Podruga Charitable Foundation, says that now it is easier for their organization to find friendly specialists and women who use PAS do not have to fight hard to receive health care as more doctors are now willing to help the patients and treat them better.

“Once a woman came to me, she started crying and said that a cleaner told all other patients of the maternity clinic about her HIV positive status, so nobody wanted to talk to her, people turned their backs on her and the doctors were rude and neglectful”, tells Irina. She says that such cases are less frequent now. Irina recognizes that through one-time training it is not possible to ruin all the fears and stereotypes, which have been building up for many years, but it can at least considerably improve the situation. In our work, the phrase “improve the situation” means better lives of women and children that can be saved with this new knowledge.

I Love Every Minute of My Life

HIV is not a verdict. It is a reason to look at your life from a different angle and get to love every moment of it.

That is exactly what Amina, the protagonist of this story who lives with HIV, did. She went through the dark side of self-tortures, reflections, and suicidal attempts to realize that every minute is precious and HIV is what helped her to become strong, independent and happy.

Amina works in the Tajikistan Network of Women Living with HIV. She found herself in this field and nowadays she is actively involved in the Antistigma project implemented within the Bridging the Gaps programme.

How I learned about my status

“In 2012, I got pregnant for the fourth time. Seven months into my pregnancy, I got tested for HIV within the routine health monitoring. Four weeks after, I was asked to come to the clinic and was told that they detected haemolysis in my blood. I got tested again. My doctor told me the result of this second test after my baby was already born.

HIV. The diagnosis sounded like a verdict. What should I do? How should I live? Where can I get accurate information? My conversations with health workers were not very informative. Nobody told me that one can live an absolutely normal life with the virus. I felt that I was alone, left somewhere in the middle of an ocean. I had my baby in my arms, my husband who injected drugs was in prison. Back then, I hoped that I could tell at least my mother about the diagnosis to make it easier for me. However, the virus drove us apart. My mother, who took care of me for all my life, turned her back on me. At the same time, my three-month-old daughter, who also had HIV, died of pneumocystis pneumonia. I hated myself so much that I even had suicidal thoughts. I took some gas oil, matches… If not for my brother, who saw me, I would have burned myself. Then I remember a handful of pills, an ambulance and another failed attempt to kill myself. I felt that I was completely alone on this dark road of life. I started losing weight and falling into depression”.

Through suicidal attempts to the new life

“Two years passed, and my suicidal thoughts started to gradually go away. I had to go on living. Throughout all this time, I kept ignoring my status, but I was searching for the information on HIV in the internet. I was not even thinking about ARVs, I was not ready for the therapy. Sometimes I did not believe that I had HIV as doctors kept telling me that HIV was a disease of sex workers.

After a while, I came to the AIDS centre with a clear intention to start ART. I passed all the required examinations and told the infectious disease doctor that I wanted to start the treatment. Six months after, I already had an undetectable viral load! I believed in myself, in my results, so I wanted to share this knowledge with all the people who found themselves in similar situations. That’s how I started working at the AIDS centre as a volunteer and later as a peer consultant”.

I am happy!

“HIV helped me to start a new life. I am happy – I help people, I am doing something good for the society working at the Tajikistan Network of Women Living with HIV. Recently, I was the coordinator of the Photo Voice project.

I want to keep people who find themselves in similar situations from repeating my mistakes. I want to protect them from unfair attitude, stigma and discrimination against PLWH as well as different conflicts, in particular based on gender.

In 2019, I gave birth to a baby. My boy is healthy. Just recently, with the help of the Photovoices project I disclosed my HIV status to my older sons.  Before that, I wanted to keep that as a secret, but after training and meetings with women within the framework of this project, I decided that I need to open my status. For me it was the scariest thing to do as I thought that they might not accept me as my mother did. However, I did not have to worry. My children hugged me and said that I am the best mother in the world. Now I’m a happy wife of my husband, whom I convinced to start opioid substitution treatment.

HIV helped me to be happy and independent! I am not afraid to say that I have HIV and I love every minute of my life!”

 

 

Prospects for cooperation in the health sector in Uzbekistan

On January 10, 2020, AFEW International, represented by Anke van Dam, Executive Director, and Daria Alexeeva, Program Director, met with Ambassador of Uzbekistan in Benelux countries Dilier Hakimov.

AFEW International is considering possibilities to implement two projects in Uzbekistan. The first one is to develop and improve the quality of HIV testing and prevention services for key populations and support people living with HIV.

The second project, entitled “Strengthening civil society in inclusive health care in Uzbekistan”, is currently under consideration by the European Commission and is on the reserve list of projects.

At the end of the meeting, the parties agreed on a schedule for the AFEW International delegation to visit Tashkent on 15-16 January 2020. AFEW International’s team will have negotiations with the Republican AIDS Center, as well as with representatives of some international organizations, which may act as donors for the implementation of projects of the non-governmental organization in Uzbekistan.

AFEW International already has experience in working in Uzbekistan: the organization supported several projects in the country through ESF, as well as was involved in preparations for the AIDS2018 conference. In addition, representatives from Uzbekistan participated in AFEW International’s community based research education project.