Despite everything, irrational fears of HIV are also widespread in the community.
Jochen Drewes (photo) is a research associate at the Free University of Berlin in the field of public health/health sciences. His work focuses on the psychosocial aspects of HIV/AIDS, prevention and sexual health. He provides scientific support for the Positive Voices project. Carmen Vallero spoke to him about his work, the changes in stigmatisation over time and how stigmatisation also manifests itself in the communities themselves.
Jochen, you have been dealing with the life situation of people with HIV and Aids for several years. The infection has changed and has now become a treatable, chronic illness for many positive people, with which it is possible to live (almost) like everyone else. How has the everyday life of HIV-positive people changed as a result?
"In fact, thanks to the effective drugs available today, which also lead to fewer and fewer serious side effects, HIV has become a chronic disease that most sufferers can live well with. This is perhaps comparable to diabetes, which also requires regular medication and regular health checks by the doctor.
However, managing one's own illness also places high demands on those affected. And what both diseases certainly have in common is that a certain amount of uncertainty and fear always accompanies them. In the case of HIV, for example: What happens if the medication fails? What long-term side effects will the medication have? Do I have an increased risk of cancer and other diseases?
But despite all the similarities, there are also fundamental differences between HIV and diabetes. Probably the most significant is the social reaction to the disease and those affected by it: HIV infection is a highly stigmatised disease. And people with HIV therefore still experience rejection and rejection, judgement and recrimination."
Has the stigmatisation and discrimination of people with HIV changed with the change in the disease?
"With medical progress in the treatment of HIV infection, the visibility of HIV has also changed. A particularly good example of this is the decline in lipodystrophy. These changes in fat metabolism, presumably caused by some drugs, led to the familiar images of emaciated faces. Today, fewer HIV-infected people are affected and for most it has become much easier to conceal the infection.
We have been experiencing a 'privatisation' of HIV for some time now, with the infection taking place 'in private' for many positive people. And although normalisation naturally has its good sides, the privatisation of HIV is also associated with a great danger of withdrawal and isolation. I suspect that this normalised approach is associated with an increase in internalised stigma, more personal shame and feelings of guilt.
However, we know little about the extent and nature of internalised stigma among HIV-positive people. I have high hopes for the Positive Voices project, in which all aspects of stigmatisation are being surveyed for the first time in Germany in a large nationwide sample."
In Germany, the group most affected by HIV is men who have sex with men. However, stigmatisation is also evident in this community. In 2010, as part of the evaluation of the ICH WEISS WAS ICH TU (IWWIT) campaign, 10,000 men who have sex with men and are tested HIV-negative or untested were asked about their opinion of HIV-positive men. You analysed the data. Which result surprised you the most?
"Stigma in the gay community has hardly been investigated to date. Previous studies have always focused on the general population, probably because they implicitly assumed that stigmatisation is not an issue in groups that are affected by HIV to an above-average extent. We can now show what is not really surprising: gay and bisexual men also stigmatise HIV-positive people.
I was most surprised by the widespread irrational fears of HIV transmission through contact with HIV-positive people, especially among gay and bisexual men. One in five participants in the survey would not kiss an HIV-positive person on the mouth, and a further 20 % are unsure. I am convinced that these men know that they cannot become infected with HIV by kissing. On the other hand, many of the respondents also associate HIV infection with shame and blame. One in three participants in the survey was convinced that they would feel ashamed if they were infected with HIV. Guilt and shame are precisely the feelings that many positive people struggle with."
In 2008, the EKAF publication caused a stir: HIV-infected people without other sexually transmitted diseases are not sexually infectious under effective antiretroviral therapy. For many people with HIV, this was a huge relief. The findings have been widely discussed and recently scientifically proven once again by a study. Nevertheless, when analysing the IWWIT campaign, you came to the conclusion that the sexual rejection of HIV-positive MSM is high. Why is that?
"In fact, the most striking finding of our research is the strong sexual rejection of people with HIV, even though safe sex offers reliable protection against HIV transmission. The findings that the infectiousness of positive people is greatly reduced by antiretroviral therapy, and that some scientists are already saying that sexual transmission of the virus is no longer possible in this case, are indeed a reason for relief for positive people. Even if we ignore the controversial translation of these findings into prevention messages, many expect that the lower risk of infection will also be accompanied by less rejection, rejection and stigmatisation.
The extent to which these hopes are justified is still unclear. On the one hand, we can see that fears of HIV can be very irrational and persistent. On the other hand, the findings have not yet spread very far, as they are hardly ever officially communicated. The representations, the ideas about HIV, the transmission routes and the dangers that are widespread in our society and influence the attitudes of individuals are also only changing slowly. There is still a lot of work to be done."
The interview was conducted by Carmen Vallero.
