Posted 30th Nov 2016
In this interview, Tamás speaks about his personal and professional experiences of HIV and the impact of stigma and discrimination on HIV prevention and testing. He discusses the role and achievements of people living with HIV in the areas of peer support and advocacy and also considers the influence patient organisations have had on HIV policy in Europe.
What is your experience of peer support and how important do you think it is for people living with HIV?
I received a lot of informal support when I was diagnosed 13 years ago because I knew two people who were HIV-positive and so I reached out to them. In Hungary there is no HIV support organisation as it was abolished due to legal and financial pressures. I now offer informal support to others by inviting them for coffee, or dinner, and giving people the opportunity to sit together and talk about living with HIV and what should be done. It’s not formalised but I think it’s extremely important to people, especially the newly diagnosed.
When I joined EATG 11 years ago, it was inspiring to enter a room where I could see people living and surviving with HIV who were tremendously knowledgeable and empowered. This experience remains powerful to this day. It set my scientific career on a completely new track and it was incredible - I try to convey this to other people living with HIV.
What can you tell us about the significance and perspectives of patient organisations in Europe?
I’m a social psychologist and so I look at the role of patient organisations in two ways. Firstly, patient organisations help people living with HIV to cope with their diagnosis and the challenges that it presents. They provide a means for transforming a negative, stigmatised identity into a positive one. Secondly, patient organisations are important because they provide a structure for people living with HIV to contribute to society in a meaningful way. In Europe, patient organisations are the new platform for citizenship-building and are shaping decision-making in a practical way.
In some recent research, I explored how a person who is recently diagnosed with HIV can transform into an informed patient and then into an expert patient. Empowerment is key in this process and this is provided by patient organisations. I have also explored the role of lived experiences and emotions in advocacy and in patient activism services provided by patient organisations and found that a certain amount of anger, compassion, love, sadness, grief and joy is required by people who provide peer support to enable effective work with people living with HIV. Patient organisations are crucial because helping others is how people help themselves.
Patient organisations are important for all fields of medicine and the HIV field is actually very progressive.
In what policy areas have patient advocates, organisations and/or activists had the most impact, and what roles should they have in designing or delivering clinical and mental health services for people living with HIV?
The HIV field is very advanced, much more than other areas. We take it for granted that people living with HIV can participate in policy-making and decision-making processes at the highest levels. I have met with the EU Commissioner for Health on a six-monthly basis but this is not the case for other disease areas. There is a wide variety in the depth and level of patient advocate involvement in policy-making and political processes. For example, the European Medicines Agency (EMA) is very active in this field and has very good guidelines for involving patients at every level, and it puts a tremendous effort into implementing the guidelines. The patient community was also heavily involved in the previous European Action Plan for HIV and AIDS, which ended last year  and we are collectively working with the European Parliament to develop a new integrated action plan for viral hepatitis, HIV and TB. Additionally, there was a lot of advocacy work to ensure that harm reduction featured on the agenda for the recent East European and Central Asian AIDS Conference (EECAAC) in Moscow.
The ability of patients to be involved in designing and delivering HIV services in the future is, however, very restricted by lack of support and resources.
In your opinion, what should be the focus of HIV patient organisations/activists over the next five years?
Information and testing should be the focus. At the European level, we are very well placed. We have patient representatives sitting on every EMA committee, we already liaise with the European Parliament, ECDC, and the World Health Organization (WHO). We have bigger problems at the local level and this is where patient organisations will have a role. Local politicians should start working with existing patient organisations to provide people with reliable, scientific, non-biased and non-judgmental information about HIV and HIV testing. I believe everything else that needs to be achieved will be derived from better information and increased testing. People require information about how living with HIV has changed and to know they don’t need to fear dying from AIDS anymore. Finding ways for patient organisations to influence processes is now the challenge and it’s especially important in areas of low prevalence, because low prevalence of diagnosed HIV is often just a reflection of low testing.
Across Central and Eastern Europe, what do you think are the main barriers to accessing HIV testing?
I think there are several barriers. The most important is the persistence of stigma and discrimination and the second is a lack of information. It’s not the lack of services, especially in urban centres where testing is almost always free and anonymous.
As soon as you are diagnosed, your social fabric disintegrates, you lose previous connections and developing relationships becomes very difficult because there is a very high level of discrimination against people living with HIV in these communities. While this is also the case in Western Europe, in Eastern regions, it is an active deterrent for people who want to know their status. Often, in the countryside social networks are very interconnected and so it is quite possible that the nurse who offers you an HIV test might be your mother’s friend. Stigma is a very difficult thing to tackle. Non-governmental organisations (NGOs) do a lot of outreach work in rural areas, but people are afraid of knowing their status.
The other real problem is that people are not well informed. It’s like in the 1980s: people think HIV is a death sentence and so they would rather not know - it’s denial caused by a lack of information about what it is like to be diagnosed nowadays and how the face of HIV has changed over the past 20 years.
Only a small proportion of people in Central and Eastern Europe speak fluent English. This, combined with chronic underfunding of translation services, means there is a disparity in the information about HIV which reaches non-English speaking people. As most research and educational materials are provided in English, many Central and Eastern Europeans are missing out on learning about HIV, knowing where they can get tested and whether and where they can get access to treatment. Only people in a privileged position can access all this information.
Would you tell us more about how the threat of discrimination and criminalisation prevent people from seeking HIV testing?
Discrimination and criminalisation are longstanding issues in Eastern Europe, particularly because HIV is primarily spread through intravenous drug use, which is illegal. The appalling continuum  of HIV care in places such as Azerbaijan and Russia reflects this. People are not accessing testing services. This is because in many Eastern European countries HIV is so closely associated with drug use that if you are diagnosed with HIV, you are sent to prison - not to hospital. We have a big problem in Eastern Europe, which is clear when you look at the figures: in 2013, in Russia, the largest country in Europe, 51% of people living with HIV were undiagnosed ; these people were not tested, treated or virally suppressed. At the European Union level, we are striving to reach a 90:90:90 target set by UNAIDS , but in Russia alone, we are struggling to reach a 40:40:40 target.
Lesbian, gay, bisexual and trans people face universal structural oppression, and stigma, discrimination and the fear of criminalisation among men who have sex with men (MSM) persist. The risk of imprisonment for being homosexual in some Eastern European countries is not theoretical - it is real.
Many features of typical Western gay culture were banned in communist Hungary, where I grew up. We also now have increasingly conservative governments and it can be more difficult to discuss homosexuality compared with during the times of more progressive governments. The UK has some very effective methods for reducing stigma. For example, in London an HIV clinic is in the middle of an area frequented by MSM (56 Dean Street). It’s a good model, but we can’t just implant this model in Central and Eastern Europe because these are different places, which have different cultures and different people; we must approach things in different ways. That said, in Central Europe, compared with the heterosexual population, we see many gay people coming to get tested, as they’re living in a world where there is HIV and they know they need to be tested.
Are there any key messages that you would like to share with policymakers about involving patients and/or community organisations in decision-making?
People with HIV have the best insight into the lived experience of HIV. We understand our bodies and would like to be equal partners. We want to work with doctors and governments and to share our experiences and views. We need doctors to help us stay alive, live well, go to work, pay taxes and contribute to society.
People living with HIV are fortunate to be so involved in the HIV field as expert patients, activists and advocates and this should continue. I believe it is our responsibility to convey the benefits of involving patients in policymaking in other disease areas too. The HIV field is very advanced in this respect and we should share our successes.
 World Health Organization, 2011. European Action Plan for HIV and AIDS 2012-2015.
 The continuum (or cascade) of care depicts the relative proportions of people living with HIV (diagnosed and undiagnosed), diagnosed with HIV, in receipt of antiretroviral therapy and virally suppressed.
 Abstracts of the HIV Drug Therapy Glasgow Congress 2014: Pokrovskaya A et al. Journal of the International AIDS Society 2014, 17(Suppl 3):19506
 The 90:90:90 UNAIDS target states that, by 2020, 90% of all people living with HIV will be diagnosed, 90% of those will be on antiretroviral therapy and 90% of those will be virally suppressed
The eFeature interview was conducted by Melvina Woode Owusu on behalf of MEDFASH.
The content of all eFeatures represents the views and opinions of the authors. MEDFASH does not necessarily share or endorse the views expressed within them.
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