I can change this world

The theme of the World AIDS Day 2019 is communities. Сommunities that make an invaluable contribution to the AIDS response. Communities of people living with HIV, key populations such as gay men and other men who have sex with men, people who use drugs, sex workers, transgender people, prisoners, and communities of women and young people are all encouraging and supporting the provision of HIV-related services. Communities are a source of vital energy for an effective AIDS response and an important pillar of that response.

Representatives of these communities are very different. Some of them are already on the front line, defending their rights every day, others are just beginning their journey towards important changes – for themselves and for society. On the World AIDS day AFEW International talked to them about their experiences and goals.

 

Konstantin Bushuyev, trans*activist, Russia

About the difficulties

At some point in my work on HIV prevention among transgender people, I was faced with some frustration. There were results. But they weren’t exactly the ones I wanted. And this work did not always find support in the trans* community itself. Studies I know from NGOs in Russia show that the topic of HIV for trans*people is not a priority. The first place is occupied by issues with hormone replacement therapy for those who need it, and general difficulties with safe access to qualified medical care. And the research that I took part in at the time showed that people who took part in the survey were very indifferent to the topic of HIV prevention, given their good knowledge of other health issues. For trans*people, in my opinion, the issues of HIV prevention and treatment are most closely related to health issues in general. Trans*people very often do not seek medical help until the last moment. Because they are afraid of inadequate response from doctors, transphobia. Because they are afraid of being outed. Because they are not ready to explain again who they are. And doctors themselves often do not know what to do with such a patient. And when it comes to HIV, all these fears double, because it is an additional stigma.

About success

For me, the main success now is that I have decided not to leave activism, despite the various circumstances that have almost already led to it. Burnout, that’s the thing…

About a reason to be proud

In Krasnodar, HIV prevention activities among LGBT people have been carried out by activists for a long time. But I am proud of the fact that my work helped to drawn attention to transgender people as a separate group with its own peculiarities and needs.


Evgeniya Korotkova, Board Member, Eurasian Women’s AIDS Network, HIV+, Uzbekistan

About gratitude

I am happy to be able to speak openly about my status because I feel the great support of my family, colleagues, activists, friends and women who have experienced HIV infection. After all, each of them has invested something so that I can now talk about HIV infection without fear, without pain or humiliation. Someone can do it right away, others need time.

About open conversation

Sometimes I talk about HIV because I have thousands of people behind me who are living with HIV and they are not ready to speak for themselves because of the stigma and discrimination in society. And for the voice of the community to be heard, you have to talk and sometimes even scream. Sometimes I talk about HIV for the public to break existing stereotypes about people living with HIV and motivate them to take responsibility for their own health and HIV testing. Sometimes I talk about HIV for PLHIV who have learned about their status, I share with them my positive experiences of living with HIV. Given my personal experience of having a child without HIV, I understand that this is a question that concerns every woman living with HIV personally and affects so many areas of a woman’s life, from self-esteem to an external social environment.

I care about women and HIV first because I am a woman, mother and wife who have gone through all the hardships of living with HIV. Secondly, it is important for me to involve women living with HIV in addressing women and HIV. We know our needs and requirements better, and what actions lead to the improvement of their quality of life. Thirdly, by helping to build women’s capacity to advance their rights and improve the national response to the needs of HIV-positive and vulnerable women, we could significantly reduce the spread of HIV among the entire population and increase support for children living with or affected by HIV.

About success

My colleagues and I initiated the submission of documents to the Ministry of Justice in order to obtain the legal status of the women’s organization “Positive Women” in Uzbekistan. I very much hope that in 2020 we will have more opportunities to lobby for the interests of our members at AIDS Centers in the field of expanding access to HIV treatment for women and children, improving the quality of medical services provided to reproductive health and combating violence against women.


Yevgeniy Yuldashev, peer navigator, ex-prisoner, Kyrgyzstan

About the challenge

As an ex-prisoner, I faced different barriers on my way.However, the biggest challenge for me was my release from places of confinement. When I tried to return to the society, the society demonstrated its resistance and did not accept me as a person. It was very important for me to regain self-confidence, overcome self-stigma and learn how to respond to discrimination.

After the release from prison, working in an NGO is the best option. Here people are more open and treat you like a normal person, which is a rare case in government institutions, for example. An important part of my way was my work, thanks to which I was able to help people from key populations and heal myself.

About a reason to be proud

Most of all I am proud of the fact that now I really start seeing myself as part of the society as I have completely quit injecting drugs and methadone. I am proud that I am married and can work in an NGO. A big achievement personally for me is having the freedom to openly say that I have seven records of criminal conviction, went to penal colonies four times and spent 12 years in places of confinement.

Besides, I am very happy that now government bodies start working on creating better conditions for people who are released from places of confinement. To a great extent, it is due to the fact that our community not only continues its fruitful work with civil society organizations, but also starts interacting with government agencies and probation departments.


Ildar Guzairov, Director of Karina NGO, HIV+, Kazakhstan

About the challenge

The biggest challenge in my life was to accept my status. Till the last moment, I did not believe that it could happen to me. Only when I found myself in a hospital and almost lost one of my eyes, I finally believed that HIV exists. At that moment, I was aware that there is life-long therapy, I read a lot about it, even though I rejected my status.

About stigma 

This year, I had some difficulties overcoming stigma in places of confinement, when I was arrested and convicted with no reason. First, I couldn’t explain to the policemen that I am sick and that I need treatment and ART. Then, when I managed to explain it to them, I was labelled as “AIDSy”, “black death”, “syph”, etc. I faced all kinds of psychological pressure, including people telling me that I was going to die. It lasted for about three months.

About how to cope

Information helped me to cope with my disease. I was able to show that I was not dying, vice versa I was feeling well and had good health, better than some others! Later I was even called in for questioning, where I was asked about HIV, routes of transmission, if it can be transmitted through air or hand-shaking, how it is treated, etc. Thus I could show that people living with HIV have strong spirit and are almost undefeatable. People shouldn’t play blame games with us as it can happen to anybody. In four months, all my charges were dropped and I was released from prison.

About a reason to be proud

Most of all, I am proud that our community has knowledge and many of us can protect our legal interests at the government level. I am happy that more and more PLWH adhere to treatment and that the government tries to help us. We have a law on HIV/AIDS, a law on probation. People in places of confinement have uninterrupted access to ART, though just last year detention centres could ignore the needs of PLWH.

About achievements

My peers and I organize self-help groups again. Before, we used to get together at my place, up to five people at a time, and today we have 35 or more people attending our groups. My activities really changed the world, the world inside me. Now I understand people, not only from the community, but also others, much better. Once I changed the world inside me, the outside world also changed its attitude to me and now it treats me better!


Andrey Radetskiy, LGBT activist and HIV expert, Ukraine

About the challenge

Probably the biggest challenge for me is that now it is not safe to have sex in Kyiv if you do not have a regular sexual partner. After PrEP became available, we see more sexual freedom, more ways to experiment in our community. That is why many of my friends and acquaintances started using drugs and engaging in chemsex. Back in the middle of 2017, it was difficult for us to find respondents for our first pilot chemsex study in Kyiv, but now finding respondents is not a problem anymore. If I say that every second person could take part is such study, it would not be an exaggeration. Now it is super easy to get an STI in our city, though there are still some problems with the treatment. For instance, to treat syphilis, apart from the standard antibiotic, one needs a couple of other medicines, which are hard to find at the Ukrainian pharmaceutical market as such medicines are mostly produced in Russia. Earlier, we used to have outbreaks of syphilis in spring, but now they happen all the time. Many guys do not notice any symptoms and engage in self-therapy – either as they are afraid of stigma from the side of doctors or as they do not realize how serious the consequences may be.

About activism

In the recent year, I delivered many lectures on sexual education and health in Kyiv-based universities for the students studying PR, marketing, journalism, medicine, psychology and social work.

Currently, I continue holding workshops, presentations, training for MSM, trans people, sex activists and all those interested in HIV/STIs. My training events are popular and demonstrate positive changes in public opinion on LGBT, in particular through raising people’s awareness on HIV/STIs.

Before July 2019, I was coordinating the project of the national information platform for MSM called GET TEST (ALLIANCE.GLOBAL NGO).

Thanks to a number of successful information campaigns, GET TEST became one of the main information portals on health for MSM in Ukraine with a possibility of fast online registration for testing and access to prevention services in 17 regions of Ukraine.

I think I can be proud of our successful information campaign “HIV Test is Easy”, for which we engaged some celebrities, opinion leaders and bloggers. We made a number of social videos, which have tens of thousands of views and receive positive feedback.

They were presented during a morning show at UA:PBC channel on the eve of the World AIDS Day. It was the first time for ALLIANCE.GLOBAL when a project aimed at MSM was publicly presented on TV.

At the same time, I think that my biggest personal achievement this year is that I started working in one of the most famous HIV/AIDS organizations in Ukraine – Elena Pinchuk Foundation, where I manage and coordinate the activities of our education centre – dialogue hub – organizing the work of its residents, developing sex education programs for youth and implementing a number of projects to increase the visibility of LGBT community (exhibitions of LGBT painters, social bullying theatres, Gender Studies talk show, etc.). Besides, in the hub I continue delivering lectures on how to reduce the risks related to chemsex and how to prevent STIs. In particular, I inform and consult MSM community members on PrEP. These lectures are attended by the representatives of our target groups, for whom such topics are most relevant.

About a reason to be proud

For the first time, LGBT agenda was brought up publicly in the Elena Pinchuk Foundation. Before, this organization did not work with this target group. For instance, in October I organized the Gender Studies talk show, with a famous TV host publicly interviewing a transgender woman, Anastasia Eva Domani. The audience of the dialogue hub was positively interested in the talk show.

However, the most significant achievement for the community of PLWH in Ukraine was cancellation of p. 3 of the Order of the Ministry of Health dated 2008, based on which people affected with HIV (B20-B24) did not have the right to adopt or take custody of children. It became possible thanks to the lawyer Vitaliy Matveyev, whom I provided with my expert support. Together we registered the PROJECTOR NGO, which will engage in human rights, advocacy and research activities. Besides, I have been consulting Vitaliy on dealing with the criminal cases against the members of key populations in terms of HIV/AIDS as well as LGBT. Currently, the lawyer makes preparations to defend clients who faced discrimination on the grounds of their sexual orientation or against whom hate crimes were committed.

The activities of PROJECTOR NGO will also be focused on organizing research studies aimed at analysing the behaviour patterns of the groups vulnerable to HIV/AIDS.

 


Konstantin, coach, 17, HIV+, Ukraine

About the challenge

The hardest challenge for me was losing a close friend of mine. I was in a lot of pain, I felt loneliness and I had nothing. But I coped with it. I don’t think that I could do that without the help of a psychologist at school. The specialist helped me to put everything in its place. I am very grateful to him.

About a reason to be proud

Activism has become a part of my life. I am proud of my activity in Teenergizer and everything I have done in such a short time. My role in the organization is to conduct and organize training. I think it’s important to involve new people in health care because many people still live with the notion that HIV is a sentence, that HIV positive person is necessarily a drug user. But if we look at HIV-positive teenagers, mostly we will not see this. But parents of HIV positive young people indeed had such problems.

 


Rahim, migrant, PWUD, Russia

About the challenge

The main and most difficult challenge for me is drugs. These drugs drag and eat you up, you live in them, breathe them…and there is nothing else around you. I had the strength to run away from them to the other side of the country. I am proud that I had the strength to do so, and I was able to give up my addiction to terrible substances. Now I am happy – I have a sunshine over me, I have home. I found an abandoned house where nobody lived for 5 years, made repairs, and now I have a house in Russia.

About openness

I talk about myself openly so everyone can see how difficult life can be sometimes. I want people who use drugs to be not afraid to talk about themselves. I guess I’m one of the first people in Russia who speaks with an open face about addiction when I’m in it. But I’m not afraid of that. If you don’t say anything, if you keep quiet, nothing will ever change. I live without a passport, without a homeland, without a flag, and I dream of living like a normal person.

About plans

Next year I’m planning to start farming, get chickens, ducks, goats and rams. I want me to have a home, a family, a wife I love. I really want “salts” to disappear from Russia, they kill people.

 

For people living with HIV in Belarus

Since July 19, 2019, a new version of article 157 “Transmission of Human Immunodeficiency Virus” of the Criminal Code of Belarus has been enforced. Despite the approved amendments to this article, it still contributes to vulnerability of the key populations, in particular serodiscordant couples (where one of the partners has HIV). However, a solution has been found, thanks to which the amendment will be able to serve for the benefit of people living with HIV.

For reference

There is a number of important provisions in the new version of article 157 of the Criminal Code of Belarus.

  • Knowingly exposing another person to HIV is punished with a fine or an arrest or imprisonment for up to three years.
  • If an individual, who knows about being infected with HIV, transmits HIV to another person recklessly or with indirect intent, this offense is punished with imprisonment for the term from two to seven years.
  • The action stipulated by the second part of this article committed against two or more persons, or a person who is known to be a minor, or with direct intent, is punished with imprisonment for the term from five to 13 years.

Besides, the amendment to this article says that the individual committing the actions stipulated in the first and second parts of the article may be relieved from the criminal liability in case if the other person, who was exposed to HIV or was infected with HIV, had been in advance warned about the fact that such individual had HIV and voluntarily agreed to perform any acts, which led to HIV exposure.

Avoiding prosecution

Before this amendment was enforced, the People PLUS Republican Public Association in cooperation with the Republican Center for Hygiene and Epidemiology held a round table to develop a set of measures, which would allow people to fully use the amendments in laws and protect themselves from the criminal prosecution. It resulted in the development of a road map and other documents regulating the fact of warning, which would lead to the enforcement of this amendment. Such documents include.

– New form “How to warn another person that I have HIV”

– Form to warn a contact person of a patient with HIV

– Memo on HIV prevention

Anatoliy Leshenok, Director of the People PLUS Republican Public Association

“When preparing the documents, we tried to take into account any possible circumstances and potential barriers,” says Anatoliy Leshenok, Deputy Director of the People PLUS Republican Public Association. “For example, the Investigative Committee, commenting on the amendment, pointed out that it is important to understand what is the procedure to check in which state an individual gave his or her consent to have a contact with a person living with HIV, to check if he or she had enough information, etc. The Notary Chamber suggested to register informed consent as a confirmation of consent for the contact with a person living with HIV. The Republican Center for Hygiene and Epidemiology developed a new notification form to be used when registering people with HIV diagnoses for follow-up, provided explanations on the amendment to article 157 of the Criminal Code of Belarus and told that it is possible to come to them with a partner to register the fact of warning of HIV exposure. A memo on HIV notification has also been developed and will be published within our project. It will be given to the partners of HIV-positive people. The memo contains contact details of the organizations providing services to PLWH as well as legal consultations.”

Who is at risk?

In the recent 6 months, there were 55 criminal cases initiated in Belarus based on article 157 of the Criminal Code. This number is similar to the one that was registered in 2018. However, it should be noted that 28 cases out of this total number were opened based on the first part of this article, where there is no fact of HIV transmission, but only a perceived risk.

“Recently, we were defense witnesses at a court hearing, when the defendant was charged with putting five sexual partners at risk of HIV,” tells Anatoliy. “The defendant did not transmit HIV to any of those partners – he took ARVs and had an undetectable viral load. The court took into the consideration the scientific consensus statement on HIV transmission, the answer of a WHO representative and the reply from the Professor of the Infectious Disease Department of the Belarus State University on the risk of HIV transmission by a person with suppressed viral load. However, the verdict of the court was that there was still a risk of HIV transmission, so the sentence remained unchanged – 18 months at standard regime penal colony. Just imagine – 18 months of imprisonment for not transmitting HIV to anyone!”

In fact, article 157 put a question mark over the existence of serodiscordant couples, who often live together for many years and even have children. Usually, within such criminal cases charges are brought against a husband or a wife, while the “victim” clearly states in court that he or she has no complaints to the spouse and that he or she was consciously taking risk to conceive a child with a loved one.

Drawbacks of this article also relate to the fact that criminal cases are initiated with no complaints from the victim.

“When making amendments in article 157, we were suggesting more radical changes – to fully exclude responsibility for exposure to HIV from this article – but the society is so far not ready for such changes,” continued Anatoliy. “Currently, the cases initiated based on this article are reviewed, where the sentences directly state that the partner was informed about HIV and consciously agreed to the actions, which led to HIV transmission or exposure to HIV. According to the Code of Criminal Procedure, the review of such cases is initiated by penal colonies and prisons, and if a person is not imprisoned, such person should file a relevant request for review with a court.”

First successes 

Approval of the amendment to article 157 of the Criminal Code “Transmission of HIV” allowed talking about the first successes of the activists in HIV response in Belarus. Now hundreds of people can have the record of their conviction expunged.

“People PLUS” thanks for the help provided in 2017-2019 by HIV justice, GNP +, EWNA. Amendment to art. 157  was brought in  Criminal Code Belarus thanks financial and technical assistance from these organizations.

Thanks the Emergency Support Fund for Key Populations in Eastern Europe and Central Asia (EECA) People PLUS have implemented additional set of measures people living with HIV in Belarus will be able to avoid criminal prosecution.

Why do researchers need to participate in the EECA INTERACT 2019 workshop?

Bauyrzhan Satzhanovich Bayserkin, head of the local committee of EECA INTERACT 2019 workshop; Doctor of Medical Sciences, Director of the Kazakh Scientific Center of Dermatology and Infectious Diseases (Kazakhstan) talks why researchers should participate in the EECA INTERACT 2019 workshop.

What do EECA researchers need today? First of all, it is the intensification of scientific discussions, improving the quality and effectiveness of research results, the exchange of experience, also with practitioners, as well as the timely tracking of new methods, developments in medicine and related disciplines.

It is assumed that the participant’s research work will be tested at the seminar; scientists, colleagues, and practitioners will discuss it and give their feedback, the network of the participant will expand. Researchers can get a job in the future, they can count on mutual assistance in research activities, communication with more experienced conference participants from other countries.

Also, within the framework of the seminar, specialists participating in the conference will ask colleagues some questions about the abstracts that need to be discussed. Such work will indicate inaccurate formulations or incorrect accents, demonstrate “white spots” in activities, and establish a discussion. Discussions and questions will indicate the relevance of the topic. All these things together will contribute to the personal and professional growth of the participants. Also, participants will have the opportunity to expand the geography of their publications, citation index, etc.

In addition, representatives of third-party organizations that will attend the workshop may be interested in further cooperation, investment, etc.

All this will contribute to the improvement and strengthening of the healthcare system and civil society.

More about the workshop read here

#EECAINTRACT

 

 

 

 

Facts abour EECA region

HIV epidemic status in Eastern Europe and Central Asia (UNAIDS, 2017)

Since the start of the epidemic:
• Over 76 million HIV-infected patients registered
• 35.0 million people died of AIDS-related illnesses
• The number of people living with HIV was 36.7 million, of which 2.1 million were children under the age of 15.
• 20.9 million people (28%) living with HIV received treatment
• 76% of pregnant women living with HIV had access to treatment to prevent transmission of the virus to the fetus
• In 2017, 1.8 million new HIV infections were reported worldwide.

Have you already registered your abstracts for the EECA INTERACT 2019 workshop?

Attention! Selected abstracts will get free registration. Please find here more information.