Germany, with a population of 82,670,000, is the most populous country in Western and Central Europe.
Latest figures show 85,000 people living with HIV (PLHIV), of whom 72,000 know they are HIV-positive and 60,700 are getting Antiretroviral therapy (ART), which has been available in the country for more than 20 years. Among Germany’s 3900 new HIV infections per year, about two thirds are men who have sex with men (MSM), about a quarter from heterosexual sex, and less than 8% people who inject drugs (PWID). Although the figures fluctuate a little in recent years, they remain roughly stable.
HIV treatment is readily available, and most people living with HIV (PLHIV) get it. Germany’s highly developed system of health care is supported by government health insurance with mandatory membership for people with lower incomes. It is generally difficult to reach recent immigrants and asylum seekers with HIV information, but the attempt is being made.
Although Germany is not free of stigma and discrimination against people living with HIV (PLHIV), it enjoys a robust infrastructure of government and NGO sources of information and support for them.
(Figures from the Robert Koch Institute, 2015)
Carsten Schatz is a passionate AIDS activist and a Member of Parliament for the Linke in Berlin. Carsten is an Eastener. He was born in 1970 on the other side of the wall, in the East German small town of Altenburg. He moved with his parents to Berlin when he was young and witnessed the fall of the wall 19 years later. A historic event that changed his life overnight.
In 1991, aged 21, his doctor told him, quite unexpectedly, that he had been infected with the HIV virus. ”A huge shock…for me it was a death sentence.” The triple combination medication which was available in 1996 gave him his future back. He went on to study and started a successful political career.
Today, on a chilly Sunday afternoon, nearly 25 years after being diagnosed, he takes the time to talk about what it was like back in the hectic 90’s. He fills me in on the things he’s still busy with today and laughs when I ask about his plans for the future. Much has changed in a quarter of a century, but one thing is clear, the idealist and AIDS activist in him are still alive and kicking. “We’re not done yet. I want to be there when nobody in Germany dies from AIDS.”
BEHIND THE WALL
“Today there’s a lot of talk about how bad it was in East Germany, but I didn’t experience it like that at all. Just as every child I was a member of the national youth organisation. It did have a political side, but mostly concentrated on ‘kids’ stuff’ like singing, trips to the countryside and bird watching. Besides this my parents encouraged me from a young age to think for myself and to actively become involved when I saw things were wrong.
In 1988 I finished school and had to start military service. I had already come out the closet by then. It took some time before I could deal with my homosexuality, but on the other hand I never had the feeling that I was doing something wrong. Homophobia wasn’t too much of a problem. It was there but in a subtle way, in small things. East Berlin certainly wasn’t a desert as far as gay life was concerned. There were lots of bars and meeting places and plenty of cruising.
In the army you were always stationed far from home. Some found this a problem emotionally but it didn’t bother me. I was training to be an officer and had to deal with those who found it difficult. You might think that the fact I had few problems during my national service, strange, but I grew up during the Cold War. At the time I thought it was good if both parties were equally strong. That this was the best way to keep the balance and therefore the peace. When the wall fell in 1989, I could see the other side of the story and left for West Berlin.
AFTER THE WALL
In that initial period after the fall of the wall there was such openness. Everybody wanted to talk to you, everyone wanted to help. Those were exciting times! Just round the corner you can still see some of my graffiti on a wall. I wrote: The scare is gone!
They were good times, but it was also a time for seriousness. A time when you could change things. I wanted everyone to be able to control their own lives. I still think that.
People should be able to decide what their own lives are like.
Of course the euphoria of the first few months faded, but, no it didn’t put a damper on it, I expected it. I was living in a squat. From day one we engaged in deep discussions. Conflicts arose, internally and also with the authorities. But all in all they were happy years.
Yes, gay life!! Well, it was fun!! A lot of fun. The ease and openness about everything to do with homosexuality was fantastic. I was running around a lot. I visited a sauna for the first time… it was an exhilarating time full of new experiences.
AIDS AND THE HUGE SADNESS
I was told I had HIV just before Christmas in 1991…the worst Christmas present ever. I was just 21…it was totally unexpected. I was in hospital for something else and was tested without me knowing. It was an enormous blow! I exploded. I was furious! The friend who picked me up took the brunt of everything. I couldn’t control myself anymore. For me it was a death sentence. I didn’t expect to live to be more than 25.
It’s a misconception that AIDS was very visible at the time. Men who had it just disappeared after a while. Many felt ashamed and just didn’t dare speak about it
It took me about a year to deal with it. In the summer of 1992 I looked for help. I started to talk to people about it. Why should I feel ashamed? I found Pluspunkt Berlin, a small AIDS organisation. Every Friday I drank coffee with fellow sufferers and soon started as a volunteer with them. Maybe you could see that as the start of my career as AIDS activist.
I lived from day to day, but I’d formulated three basic principles of how I wanted to do this. Firstly I didn’t want to get into any trouble, I didn’t have time for that. I wanted to live as healthily as possible, and finally I only did those things I really wanted to do.
In 1993 the international AIDS conference was held in Berlin. I attended that conference… I met an American who I fell madly in love with. I had never experienced love like I did with him… he was the love of my life. He lived in LA but we still had a relationship. We just flew back and forth to see each other… In the summer of 1995 he moved to Berlin. He already had AIDS. A few months later he became very ill… Again, just before Christmas. He was taken into hospital. That was quite a thing because he was in Germany on a tourist visa. So in fact he was illegal. The doctors diagnosed a severe lymphoma in the brain. In January 1996 they said they couldn’t do anymore for him. His prospects were nil…He went back to LA to die…I went with him. He died a month later.
I was 26 and wanted to grow old with this guy. It was such a loss. I felt so much emptiness. Again another huge blow. It was a huge confrontation with my own fate…
A few months later during the AIDS conference in Vancouver came the news about the triple combinations. Oh my God, I thought, why couldn’t this have been a few months earlier? Then none of this would’ve happened. You know, I like to do things! And when you’re in a position when you can’t do anything, like with him…
I hated that. It sucked!
A POLITICAL CAREER
I had been involved with local politics from a young age, but in 1996 I got a job with the PDS (a German political party). No, my HIV wasn’t a problem at all for them.
Work helped! The daily routine of a job makes it easier to get through a difficult period. I like to work. I’d rather die a hundred times working than sit around doing nothing. These days it’s quite normal to work and have HIV. Thank goodness! At that time I was one of the few with a job.
In 1997 I started with medication and that created a new future for me. I started to study. Finally. In 1999, as well as my work for the PDS, I did a History, Politics and Philosophy course.
Why politics? That’s easy to answer. I wanted to change the world and think politics is the best way to do this. My grandparents always said: if you want things to change, you have to organise it. Find like-minded people, create a group, talk to each other, and listen to what’s going on. What motivates me is that it works. There’s power in a group!
But I like politics too! I love the conversation and the discussion. Sometimes you agree with one another, sometimes not. It doesn’t matter. It always moves you a step further. I have nothing to do with the cynicism that you so often see nowadays.
My strengths? Phew…I think that I always try to be myself. True to myself, that’s my starting point. People feel that. I always put all my cards on the table. If you don’t agree with me, then we can talk about it. I want to involve you and help you shape this involvement. I want people to be in charge of their lives. I believe in this way of working. I think it’s the only way to get things done.
The PDS where I started merged with another party in 2007 and created Die Linke. In 2001 I was elected as a member of the local committee for the party. Since then I’ve been re-elected 5 times. In 2011 I stopped as party secretary to stand as candidate for parliament here in Berlin. It was a strange election night. As a party we hadn’t done very well. At first it looked as if I hadn’t been elected, but when I got home I saw my name on TV as the newly elected Member of Parliament. But a recount revealed that this wasn’t the case after all. In 2013 a death created an empty seat and I was installed as Member of Parliament.
2015 AND THE FUTURE…
There are few reasons to complain about the German health care system, also with regard to HIV and AIDS. There are plenty of experienced doctors. That’s the most important. When people come to me and ask for advice I always say: don’t take the kindest or the most available doctor but choose the most experienced. That’ll be the best for you
Ten years ago I thought that the Deustsche Aids Hilfe had become lazy. So in 2008 I put myself forward as a board member. I was elected and for 6 years have tried to put people in the picture about the fight against HIV and AIDS. We’re not finished yet. In 2015 600 people still died of AIDS in Germany. That shouldn’t happen. We’ve got the money, the knowledge, the infrastructure and a well organised society. Everything that is required to ensure that nobody in Germany dies of AIDS. If we manage to achieve this then it would be an incredible signal to other countries: we can beat AIDS.
As Member of Parliament I’m spokesman for many different subjects: European affairs, lgbti-policy, solidarity, but I’m not the first man for health care. My HIV did play a role when I took office in 2013. Should I have disclosed my HIV status? Obviously I chose to do so. Because of all the media attention I immediately became a well-known Member of Parliament. While most Berliners have no idea who my colleagues are.
My plans for the future? Oooh, that’s a question! I never expected to last so long, so that’s something to be happy about. I’ve been living with a new partner for years, something else to be happy about. Well….what else…..I think about many things, also personal things…
About everything I’m an optimist and hopeful about the future. What I do is set goals regardless of whether I will achieve them for the full hundred percent. In any case you always have to try. Setting a goal gives direction to your work. It sets everything in motion. Gradually during the process you discover how far you have come and what more you need to do.
An image that I like to use to describe myself is that of a stone-thrower. Now and then I throw a stone in the pond. That causes a ripple which in turn grows. If in the future I can throw some more stones then I’ll be a happy person. “