Zero Discrimination Day 2019: Message from Anke van Dam

Stigma and discrimination are obstacles that discourage people from taking an HIV test in Eastern Europe and Central Asia. Access to confidential HIV testing in the region remains a big concern. Many people only get tested after becoming ill and symptomatic. Today stigma is, unfortunately, the strongest barrier not only for testing among those who are not aware of their status but also for the treatment and care of those who live with HIV.

Stigma and discrimination are also a very big issue for people who use drugs and other key populations at risk for HIV in Eastern Europe and Central Asia. Discriminatory laws prohibit those groups to access health care and participate in the life of society.

Migrants are another vulnerable group who experiences stigma and discrimination on many levels. The situation worsens when migrants have HIV or use drugs. Then it is even harder for them to receive medical treatment.

It is especially important to talk about stigma and discrimination today while observing Zero Discrimination Day. We, at AFEW Network are supporting UNAIDS in highlighting the urgent need to take action against discriminatory laws. Working in Eastern Europe and Central Asia for almost 20 years, we are taking actions from our side as well. We are expanding the access to HIV testing by partnering with the non-governmental organisations and community-based organisations in the region and ensuring that people who use drugs, prisoners, sex workers, LGBTI, and young people have access to confidential HIV testing, and people living with HIV have access to good medical care and have great possibilities for a healthy future.

Ending discrimination and changing laws is our common responsibility, it is what we all can do. Everyone can contribute to ending discrimination and can try to make a difference. We all can break the wall of stigma and make this world better! Chase the virus, not people!

HIV on AIDS 2018: Global Extent, Impact and the Way Forward

The issues of stigma, discrimination and human rights violations were broadly discussed during the AIDS 2018 conference which was held in Amsterdam, Netherlands in July 2018. The conference sessions explored the political, economic and sociological manifestations of HIV related stigma, discrimination and human rights violations on the global level articulated by the civil society.

Global Network of People living with HIV presented their report on HIV stigma and discrimination in the world of work which included findings from people living with HIV (PLHIV) stigma index. The report was written based on the information provided by 13 country teams who implemented the PLHIV Stigma Index.

Stigma index as a tool

Addressing stigma-affected people living with HIV is a global priority. Stigma, defined as “the co‐occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised,” has a negative impact on the health of PLHIV and contributes to the psychosocial stress, coercion and violence, job loss, and social exclusion. PLHIV, gay men and other men who have sex with other men (MSM), transgender individuals, sex workers, and people who use drugs (PWUD) – often referred to as key populations – are at the intersection of HIV‐related stigma and prejudice against their identities, occupations or behaviors that are often exacerbating their experiences of stigma and discrimination.

The PLHIV stigma index provides the evidence on stigma and discrimination that has been essential for informing HIV policy, PLHIV rights advocacy efforts, and stigma‐reduction interventions.  Stigma index is a research tool by which PLHIV capture data on their experiences of stigma and discrimination. As of November 2017, more than 100,000 PLHIV had been interviewed in over 50 languages by 2 000 trained PLHIV interviewers.

Stigma is complex

Stigma and discrimination remain a significant HIV risk factor for the key populations all over the world and mostly for people living with HIV as stigma directly and negatively affects health outcomes. At the International AIDS 2018 Conference, the participants reviewed new developments in the effort to combat stigma and discrimination, report results from researches and analyses of interventions and effective anti-stigma programs. The implications of the studies were discussed as they relate to the development of ongoing efforts to reduce HIV-related stigma and discrimination around the globe.

The construction of stigma is complex. Therefore, anti-stigma interventions must take this into account. Stefan Baral, M.D., Johns Hopkins University, presented a cross-country analysis of intersectional stigma among MSM, including perceived stigma, enacted stigma, and anticipated stigma related to family, community, and the health system.

As national AIDS programs and the international community grow efforts to implement plans for the universal access to HIV prevention, treatment, care and support, participants of the AIDS response should work together to overcome the main obstacles to achieving this goal.

MSM with depression have higher risk of stigma

Expressions of stigma in this analysis included a broad range of behaviors, such as family exclusion, rejection by friends, family gossip, verbal harassment, being afraid in public, being afraid to seek care, avoiding seeking care, poor treatment by health care workers, health care worker gossip, police not providing protection, blackmail, and even physical harm. Harassment and gossip were noted as important forms of enacted stigma that must be addressed, and intersecting identities were found to raise the risk of experiencing high stigma. MSM with depression, for example, had a higher risk of being stigmatized. These intersecting identities represent a critical target for all types of stigma reduction, particularly anticipated health care stigma.

In many countries and communities, HIV stigma and subsequent discrimination can lead to the same devastating effects as the disease itself: a break with a spouse and/or family, social ostracism, loss of work and property, exclusion from school, denial of medical services, lack of care, support, and violence. These consequences or the fear of them mean that people will not be very willing to be tested for HIV, disclose their HIV status to others, or seek treatment, care and support.

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.

HIV in Georgia: is there any stigma

Author: Irma Kakhurashvili, Georgia

Our meeting with David Ananiashvili was appointed in a green courtyard of the Infectious Diseases, AIDS and Clinical Immunology Research Centre. The Centre is located in an old building in one of the central districts of Tbilisi, Georgia. The authorities have been promising a new working space for the centre since long ago, but so far there has been no progress in this process. However, David feels at home – he knows every corner here. He was one of the first people in Georgia who publicly spoke about their HIV status. David is the head of the Georgian Plus Group NGO. Since 2000, the NGO has been implementing various projects to protect the rights of people living with HIV and standing up to stigma and discrimination.

In the meeting room, David says that the civil society sector in the area of HIV/AIDS is quite small. Besides, there are not many resources available to fight stigma. In Georgia, all people have access to free HIV treatment (antiretroviral therapy is available and accessible for patients since 2004 through the grant of the Global Fund to Fight AIDS, Tuberculosis and Malaria), while stigma is one of the main factors hindering access to testing of HIV. David says that most stigma-related issues may be observed in health facilities, in the relations between doctors and patients. The HIV-related stigma in the healthcare system – both in state-run and in private clinics – is so strong that sometimes doctors and other medical personnel do not provide the required high-quality services. There have been cases when doctors refused to perform life-saving surgeries if their patients had HIV.

Stigma is reinforced by myths

The situation is worse in regions of the country, especially in smaller towns and villages where patients are afraid of social isolation and are reluctant to disclose their status even to their family members. Here, the HIV diagnosis still leads to the feelings of panic and helplessness as it used to be in the 80s.

“HIV is a stigmatized disease causing a number of emotional and social problems. Stigma is reinforced by a variety of myths, for instance, that HIV is a result of the person being irresponsible, practising immoral behaviours or using drugs,” explains David.

The community of people living with HIV in Georgia is not as open as it should be but David believes that everything has its time and that this issue may be resolved. Current scale of the response to hepatitis C may serve as a good example. Until 2015, people in Georgia had never talked out loud about this disease, but after the government started the national program of hepatitis C elimination the ice was broken: many people were able to recognize they had hepatitis and start effective treatment.

In the nearest future, hepatitis C elimination programme will also include screening for HIV, which means that the patients who are tested for hepatitis C will also be screened for HIV. The initiator of this idea – AIDS Centre – is sure that integrated services will significantly improve the HIV detection rates. David says that countering stigma requires a comprehensive approach instead of one-sided efforts.

Strategic plans

The estimated number of people living with HIV in Georgia is 12,000 people. Apart from countering stigma and discrimination, the main goal in the AIDS response is detection of the new HIV cases.

David says that there is a need to bring up the issue of preventive treatment of discordant couples in Georgia. Pre-exposure prophylaxis of HIV (PrEP) is a new method of HIV prevention. PrEP provides additional protection in cases when people do not use condoms for whatever reason.

David Ananiashvili and his colleagues plan to make their contribution to the development of a new National Strategic Plan to Fight HIV/AIDS. Its main objectives will be delivery of services to vulnerable groups and further scale up of prevention programmes.

“We would like to implement a new project by creating a consortium to make sure that in future our services – counselling centre, mobile clinics, outreach services, group activities, etc – and interventions are explicitly described in the HIV/AIDS strategic plan and to add new services to the existing ones. We will conduct focus groups, identify common challenges and needs to analyse and understand which services are needed for vulnerable populations and which of them are more effective,” says David.

Key Populations of Kyrgyzstan Signed Memorandum of Cooperation

img_4835Organizations that work with various key populations in Kyrgyzstan had their first partners’ meeting to develop joint action plan in October 2016. The meeting was attended not only by the staff of organizations working within the framework of the project “Bridging the Gaps: Health and Rights for Key Populations 2”, but also by the representatives of key populations. The main goal was to create a joint action plan for the year of 2017.

Four organizations that work with key populations SW, PUD and LGBT in Kyrgyzstan are getting grants within the project “Bridging the Gaps: Health and Rights for Key Populations 2.” It is not a secret that stigma exists within key populations, and the partners’ meeting and common work in the future could help to overcome barriers and build partnerships.

– Before this meeting, the cooperation of key groups existed, but it was scattered, – the representative of the LGBT community Sanjar says. – Only some of the organizations or individuals were working together. I think that now there will be more understanding, cohesion and partnership development. With this meeting we started the construction of the charter community solidarity. We did not know about the problems of each other, but the joint activity will help to get to know them more.

At the meeting, partners developed activities based on common challenges and discussed methods of communication when working together. Organizations that work with different key populations plan to set up a Google group for the permanent exchange of information and will carry out such partnership meetings on an annual basis.

– For me, joint work showed that despite many differences and peculiarities of each particular group, we have many common barriers, which are based, in my opinion, on stigma and discrimination of key populations, – says PUD representative Sergey. – Partners’ meeting was a great opportunity to better understand the challenges that such key populations as LGBT and SW are facing. I was surprised by their professionalism and ability to work together.

Following the meeting, four organizations signed a Memorandum of Cooperation. In the document they agreed to work together to ensure the access of key populations to social, legal, psychological, medical and other services without discrimination, taking into account gender-specifications.