I live in Germany. Germany is a Western European country and – despite all its problems – it is still regarded as a very good place to live, even when you are HIV positive. I do have health insurance. I do have access to one of the best medical systems on this planet. However, I do not dare to have an HIV test.
Since 1991, I have worked as a professional (and volunteer) in the HIV field. I’m a journalist and I feel well informed about all HIV related issues. I know where to get a test, anonymously, counselled and free of charge. If the test were positive, I would know how and where to get medical and psychosocial help. However, I do not dare to have an HIV test.
In my work with women who live with HIV it is not unusual that I am asked if I am also HIV positive. My answer is always “I do not know”. This answer would be applicable for the vast majority of people in Germany. Out of more than 80 million people, we count less than 70,000 people as living with HIV. Given these numbers, prevention must work very well in my country. However, I do not dare to have an HIV test.
Some people say that this is not a problem. There is no need for people like me to be tested. They say that I do not belong to what they think is a risk group. Well, I might not belong to such a group, but what do they know about my behaviour? Just because I work in HIV does not mean that I am always and exclusively bound to safer use or safer sex. Which is, by the way, not safe sex. That’s why I admit that I have been at risk of contracting HIV more than once in my life. However, I do not dare to have an HIV test.
What is it that makes me afraid to get the results of an HIV test? Especially of a positive test result? Well, I don’t perceive myself to be an ignorant person and as I stated earlier, I would be eligible for some of the best medical and psychosocial help. The one thing that keeps me from having a test is – stigma.
I know far too many cases in which people living with HIV have been treated in ugly, discriminating ways. I could write volumes about such episodes. Not from the past, but in the present and ongoing. There’s that young woman urged by her obstetrician to abort her pregnancy with the statement “You won’t live long enough to care for your sick child, better to also get sterilized right away”. There’s that man, a clerk, who was trying to find a job through a job centre only to find his file marked in red letters “Achtung – AIDS” Furthermore, he was told “We don’t want to waste our time with your case and recommend that you stay at home and don’t put others at risk.” There’s that young, famous singer who was imprisoned for a while last year and publicly charged for having unprotected sex: “She is a danger to society.” In August her case will be taken to court. Whilst she is not allowed to talk about any legal matters, she has talked openly and very eloquently about her HIV condition at some events, such as the regular Berlin Opera Gala that raises funds for people living with HIV.
These are only a few examples out of several dozens in recent times that give reasons why I don’t dare to have an HIV test. I rather defend my right of not knowing. I see more benefits in not knowing than in knowing of an unlikely but still possible condition. Not knowing actually protects me. It protects me from being rejected by some countries which would not let me travel there. Not knowing protects me from an insolent insurance salesman who would not sign my policy. It protects me from disgruntled sex-partners who would like to prosecute me. And it protects me from dubious advertising campaigns that claim to be preventive, but in fact stigmatize and criminalize those who live with HIV!
I do not dare to have an HIV test. And I think I have good reasons not to dare. But still, my opposition to having an HIV test does not feel right. Actually, if I reflect more rationally, it can’t be right. It can’t be right that I fear for myself, my rights and my personal well-being. And this cannot be right for the public health in my country.
My colleagues and I in the HIV field have grown to understand that people living with HIV are not the problem but part of the solution in fighting AIDS. They are our best allies when it comes to holding the virus at bay – in both medical therapy and in epidemiological respects. Patients with medication working well are not likely to pass on the virus. But before you can get that medication you have to have an HIV test.
The president of the German AIDS Society, Juergen Rockstroh, just recently stated: “Discrimination and social exclusion of persons living with HIV discourage people from having an HIV test.”. His call for more tests will remain unanswered as long as we do not have a social climate of support and respect. Likewise, Nobel laureate and AIDS researcher Francoise Barré-Sinoussi at a convention in Canada this May said: “The primary barrier preventing people from getting tested is social stigma.”
HIV prevention needs to initiate, needs to support a change in social climate. It must work towards a society, in which those who live with the virus do not have to fear being stigmatized, being excluded, being segregated.
This week the International AIDS Conference is taking place in Austria, my German speaking neighbouring country. The conference is not only about medical science, it is also about prevention. The media and the public will hopefully follow the experts’ meeting and their outcomes. If prevention dares to overcome stigma and fear, I might overcome mine.