It started with a new telephone in his office kitchen in Berlin that would hardly stop ringing. On the other end of the line: agitated and distraught people with questions about the then new disease AIDS, acquired immune deficiency syndrome. “Our goal was to do something,” says Stefan Reiß. “For example, making us available as a contact person when people are abstractly afraid of the disease. The danger of hysteria was the central concern at the time.”

Reiß, who is now 72 years old, is one of around ten people who founded the German Aids Aid (DAH) in Berlin 40 years ago on the initiative of the nurse Sabine Lange and the publisher Bruno Gmünder. That was on September 23, 1983. The initially mysterious disease was first described in the USA in 1981, and the HIV virus was only discovered as the cause two years later. Anyone who became infected back then almost always developed AIDS, which meant death. “We were completely overwhelmed. We had no training whatsoever in counseling,” says Reiß about the early days.

Among the founders of the self-help organization were gay men or people in close contact with them. Like the operator of a gay bar, to whom customers often poured out their hearts, as Reiß says. There were also people who used intravenous drugs as well as people in sex work and from countries particularly badly affected by HIV. These are still core target groups today.

Exaggerated fears?

At that time, there were initially many people who thought AIDS was exaggerated and who were worried about the emancipation they had fought for, explains DAH spokesman Holger Wicht. Others thought only the USA was affected or ignored the topic. “The tipping point was 1983. That’s when many people understood how dangerous it was.” Back then, some people went to funerals more often than to birthdays. And the question was: Can you continue to have sex?

Nurse Lange was a central figure for Stefan Reiß: She stood for medical expertise and enjoyed the trust of many gay people. They had them anonymously examined at the state vaccination center at the time for exotic pathogens that were suddenly appearing more frequently in gay men. The shy-seeming woman with AIDS recognized the seriousness of the situation very early on, also through contact with those who were sick.

The situation in Germany

According to estimates by the Robert Koch Institute (RKI), from the beginning of the epidemic to the end of 2021, the consequences of an HIV infection in Germany cost the lives of more than 32,000 people. The estimated number of new infections fell significantly after peaks in the mid-1980s until the end of the 1990s. Then there was a resurgence for a while. With around 1,800 infections in 2021, the value is as low as it was at the beginning of the noughties.

HIV diagnoses are often made years after infection. The symptoms, which appear relatively shortly after infection, can be mild and are often mistakenly interpreted as an infection. Afterwards, those affected are often free of symptoms for a long time. The RKI currently assumes that there are around 8,600 people in this country who do not know that they are HIV-positive.

Prevention before the Internet age

In the early days, the DAH was concerned with obtaining and disseminating information. The Internet didn’t exist yet. Instead: leaflets. In 1984, for example, tips appeared on how to behave if a friend has AIDS. Not avoiding him, caring for him – things like that. “We have been beaten so much for writing down things that are self-evident,” says Reiß.

The big problem was the uptightness of society at the time. Condoms were usually only available in pharmacies and men’s toilets. Homosexuality was not discussed openly. Campaigns like today “according to the motto: socks off, condom on”: unthinkable. Since 1985, the DAH has received state funding for its prevention work, as Wicht says.

Over time, more plain text became possible. The famous campaign “Don’t give AIDS a chance” and a telephone consultation from the Federal Center for Health Education (BZgA) began in 1987. The red ribbon as a symbol of solidarity with those affected has been around since 1991, thought up by a group of artists in New York.

Aids help today

Today the DAH is an umbrella organization of around 120 institutions in Germany. It’s no longer all about HIV. But more broadly around health issues of the target groups and related topics.

Katja Römer from the board of the German Association of Outpatient Doctors for Infectious Diseases and HIV Medicine (dagnä) praises the DAH as the “voice of those affected”. There has been close cooperation for many years, but there are still different points of view when it comes to the content of medical guidelines. “But it’s rewarding to include the community’s perspectives.” Educating about sexual health and tackling the stigma is still important. “Medically, we have HIV under excellent control. But those affected need support and advice.”

What is possible with medication – and where there are still problems

Although there is still no cure for an HIV infection, the viruses can be kept in check with medication. The combination therapy, which was introduced around 1996, is considered a breakthrough. If it is successful and the medication is taken strictly, those affected could expect an almost normal life expectancy, writes the Association of Research-Based Drug Manufacturers. HIV infection can now also be prevented with medication: according to the RKI, 32,000 people in this country use so-called PrEP (pre-exposure prophylaxis).

The DAH’s experience is that there is still a lot going on when dealing with HIV-positive people, as spokesman Wicht says. An example is fear of contact with those affected in the medical field. Discrimination is common. “We have achieved a lot, but we are not yet at our goal.” Wicht also sees achievements in today’s much more liberal approach to drug consumption, for example with the distribution of clean injection utensils. Numerous inquiries remained from people with fears and questions about HIV and AIDS. “But the situation is no longer as dramatic as it was back then.”