Meet Nikos Dedes, the man behind “Positive Voice”

2 December 2014

Nikos Dedes, 47, is the chair of Thetiki Foni, the Association of People Living with HIV in Greece and former Chair of the European AIDS Treatment Group, the foremost patient driven advocacy group in Europe. Born and bred in Salonica, he studied film before moving into activism around HIV/AIDS. He is based in Athens and frequently travels to HIV/AIDS conferences around the world. He spoke to us from Rome.

M: Hi Niko, thanks for talking to us on the occasion of World AIDS Day. Today the pandemic is so much different than it was when the World Health Organization started marking this as a way to promote awareness of HIV/AIDS in 1988. How are things different now than they were in '88?

ND: A pleasure talking to you. Well, since the advent of the highly effective treatment in 1996, HIV has changed from a terminal disease to a chronic condition. Moreover, with the latest generation of medicines of one pill once a day with little (if any) side effects, we are talking about an easily managed condition with excellent quality of life. The latest "breakthrough" is the so-called "treatment as prevention". A large NIH (National Institute of Health) trial proved in 2011 that effective treatment decreases risk of transmission by 96%, making the life of partners with different status so much more relaxed.

M: How did you get into this whole thing? You're a film studies guy. Shouldn't you be part of Greek Weird Wave.

ND: HIV entered my life delivering thousands of moviegoers from possible harm. But when it did in 1994, it was no laughing matter. Solitary scientific literature quest was my best companion until 1997 by which time the change of the HIV treatment trajectory enabled me to share my status to my family and friends. Before that I simply did not wish to burden anyone at a period when I needed no help.

M: There are all kinds of activists in the HIV/AIDS field. In the US we had cases of housing and job discrimination, for example, so there's a legal aspect. Obviously there are the drug issues – creation, patent, regulatory approval, and getting to market at a price people can afford. There's prevention. There's the search for a cure. There's mental health care for people with HIV/AIDS, their partners, families, and the health care practitioners themselves. What do you focus in your work? Is it what you focused on when you started?

ND: Being active in the field of HIV activism and advocacy for 17 years means I had the opportunity to work on all of the topics you mention. The European ADIS Treatment Group, which I joined in 1997, was created to help expediate research on life saving treatment and improving the Standard of Care. Today we look forward towards Universal Access to treatment and prevention modalities. Next frontier is the pursuit of cure.

On a more personal level, the last 5 years I have dedicated most of my time to create, together with a group of friends and colleagues, Positive Voice, the association of people living with HIV of Greece and in November 2012 the innovative, community based and led prevention and testing facility, the Athens Checkpoint. The success and impact of both gives great pride to all of us.

M: How has the economic crisis in Greece affected the spread, diagnosis, and treatment of the disease?

ND: Greece is featuring in textbooks as an example to learn from and avoid. Drug users were a group not affected by HIV in Greece, unlike the rest of EU Southern Countries and Switzerland. In 2011 we saw a 1600% increase in new cases which continued all through 2012. The response was succesful in reversing this trend in 2013 and 2014. But the cost of avoiding it in the first place would have been an infinitesimal fraction. Harm Reduction programs, while scientifically proven to be effective and strongly supported by WHO, don' t seem to be good enough for Greek ignorant bureaucrats.

Second emerging problem and concern is access to treatment for the increasing number of uninsured Greek citizens with HIV and access to treatment for migrants without papers. Something that is considered a wise and necessary Public Health choice and Greece was subscribing to.

M: Greece seems to have a low level of HIV/AIDS. Is the rate of prevalence we see correct, or are the numbers undercounted?

ND: HIV is the only disease for which we have robust surveillance data. The figures are dependable and as I mentioned above, were first to highlight our colossal failure to avoid the HIV outbreak in drug users.

M: You go to the US pretty often and your English is better than mine. So let me switch it up and ask you what is your impression about the state of HIV/AIDS in the US.

ND: I am sure that it would come as no surprise if I told you that US is a country full of paradoxes. On the one hand at the forefront of cutting edge research, on the other hand having in one of its cities HIV prevalence higher than the entire so-called West and comparable to Africa. That being none other than Washington DC.

The US has eliminated the AIDS Drug Assistance Program (ADAP) waiting lists by December 2013 but in February 2012 it was at the staggering number of 4.200 people.

Finally the disproportionate incidence in blacks/African Americans and in particular young gay black men, should make one wonder about the social determinants of HIV risk of infection and the necessary steps to address those.

M: In American media we read a lot about new generation gays not using condoms, and a resulting increase in the number of HIV cases from unprotected sex. Is this happening in Greece? If not, how are you achieving this, and if it is, what are public health groups and NGOs like yours doing to change it?

ND: First of all gay men across the world are the ones using condoms considerably more consistently compared to straight people. The lack of decrease of new infections and indeed the increase in some parts of the world, highlight the much greater structural and ecological risk that gay men face and the limitations of the traditional prevention interventions. Surely the change of perception of what it means to live with HIV is no longer frightening young people. Older gay men, where data show are also at high risk of HIV acquisition throughout their sexual lives, have prevention and condom fatigue, many of them regretting all the trouble-free years that were robbed from them in the last 30 years.

M: Related to this is the whole controversy around Truvada. I read a lot about it in the US media but not much here. Tell us what it's about and what your opinion is?

ND: Truvada as a pre-exposure prophylaxis is a highly effective intervention that can help people stay uninfected during a period when they are not in a stable relation or during a period of higher risk taking sexual activities. No one deliberately exposes oneself to risk and the majority of people diagnosed with HIV are surprised and realise they had underestimated their personal risk. Truvada is the only new prevention modality beyond and in addition to the condom. That being a "technology" that pre dates HIV and with an effectiveness of HIV risk reduction, according to scientific literature, of 80%. The FDA has rightly approved the use of Truvada, whose effectiveness is calculated to be above 90%, since 2012.

In Greece like, like the rest of Europe, a conservative approach has led the company that produces Truvada to avoid submitting an application to the European Medicines Agency. The 'European AIDS Treatment Group' has published, or is about to, an open letter demanding both the company and the European agency to meet up their responsibilities.

M: OK, let's go regional. Can you talk about what else you do as member of the European Treatment group.

ND: The EATG has been interacting with researchers, Scientific Societies, European agencies like the ECDC and the European Medicines Agency, with the Commission & the European Parliament and with industry to promote State of the Art treatment and prevention interventions. We also wish to address the huge gap between East and West as well the Stigma and Discrimination across all settings. Clearly such an ambitious agenda has immense hurdles and the solutions can only be given at national level. This is why the EATG has also invested heavily in training and preparing young activists who can then do this work.

M: You go to a lot of conferences around the world. What is the point of that? Can't you just do everything online?

ND: Surely we shall all be doing a lot more online when video conferencing becomes seamless. But those meetings are not just about disseminating information and scientific findings. It is about dialogue and being outside one's daily enviroment. The exposure to other disciplines and the reminder of the differences and similarities of all of us globally, helps focus and stimulate ideas. I can assure you that a lot of money is being wasted but people meeting each other, is not one of them.

M: Where are things going with this disease? Is the number of people with HIV going up or down? What about the fatality rate from AIDS? What percentage of people worldwide are getting the antiretroviral drugs?

ND: The Global number of people living with HIV is 35 million. There were 2,1 millions new infections in 2013, down 31% since 2001 when those were 3,4 millions.
Deaths have fallen by 35% to 1,5 million in 2013 since they peaked to 2,4 millions in 2005.
By the end of 2013, 13 million are on treatment and that represents 37% of all people living with HIV.
Deaths and infections are still very high but the constant virtuous trend show that the Global response, where the US has demonstrated amazing leadership, is succesful. The economic crises has dampened this investment at a time when moderate scale up could have a hugely multiplying effect that would be a tipping point. When one sees where money goes, I fail to understand the reluctance of the G8 to make sense of all this investment and enter into the AIDS free generation that Clinton and Obama spoke about but somehow let us down one step before achieving it. What it would require is to confront G8 with its collective responsibility to give more and demand more country ownership in key parts of the world.

M: Last question. Most people don't know that you are a former chess champion and an accomplished musician. Have either of these skills helped your activism?

ND: Accomplished in music appreciation is by far more accurate! About chess, I have come full circle in my appreciation of its contribution to my personal development. It is a highly addictive game, akin to a science without an application and offering aesthetic pleasure like art. I considered it once a danger to young people equal to drugs. It can certainly derail people from their academic fulfilment. Then if you think how it sharpens your strategic thinking and planing ahead, your discipline and character building through owning your mistakes and losses, one realises those are not bad lessons.

M: Thank you, Niko.


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