Photo by Maia Schoenfelder
With about 500 newly infected people each year (mostly gay men), Berlin is Germany’s HIV capital. But what does it mean to live with and die of AIDS at a time and place in which specialists claim that customised treatments can provide many HIV patients with the same life expectancy as anyone else?
When Dan heard about the death of the young man, he was furious. It was an online friend of a friend – he had never met him in person – but when this 26-year-old from Italy died, Dan was bewildered. “How?” he asks. “How could you die of AIDS today?”
Dan sits in a café near his Schöneberg flat. With his long grey beard, tunnels through his earlobes and tattoos on his arms, he makes quite an impression. But the reason for his anger about the death of a young Italian gay man is this: if he himself has managed to stay alive for 17 years with the virus in his blood, how could someone today just die of it?
The young Italian, Dan found out later, hadn’t known he was HIV positive. He was brought to the hospital with full-blown AIDS.
“A sexually active gay man who doesn’t get tested at least once a year,” Dan says, “is an idiot.” According to the Robert Koch Institute, the German federal institution responsible for disease control and prevention, 60 ‘idiots’ died of AIDS in Berlin last year.
It was in 1994 in San Francisco that Dan got high and, in the heat of the night, didn’t care: he had unprotected sex with someone who was HIV positive. The story is as old as AIDS.
About one year later the Highly Active Antiretroviral Therapy (HAART) came out. The treatment has proved incredibly effective in treating the virus, and in many cases HAART can sink a patient’s virus load down to a level where it is untraceable in their blood. Furthermore, with HAART, doctors no longer find it necessary to wait for the number of T-cells in a patient’s blood to sink below a certain level before starting treatment.
Dan takes three pills once a day and gets blood work done every three months. Otherwise, he lives a normal life. “Today, living with HIV is like living with, let’s say, diabetes,” he says.
In short, when diagnosed and treated early, it’s possible to get a grip on HIV.
The ‘new AIDS’
Dan has found an AIDS/HIV doctor at Ärzteforum Seestraße in Wedding, one of 13 practices in Berlin that specialises in the medical care of the estimated 11,000 Berliners that live with AIDS or HIV.
“Currently, we treat 900 HIV patients at Seestraße,” says Dr. Christoph Mayr. And yes, he agrees that HIV can be compared with diabetes, an analogy that has become common in the medical community. Experts like Mayr call this concept of a chronic but highly treatable disease, ‘the new AIDS’.
Mayr even suggests that today, many patients under proper treatment have the same life expectancy as people who are HIV negative.
You can feel the ‘but’ hanging in the air when Mayr talks about this. He is one of Germany’s first and foremost HIV specialists, having worked with patients since 1988, a time, he recalls, when he would come to an autopsy verdict of “AIDS” at least once a week.
Mayr is a member of the board of the German Association of Physicians Specializing in HIV care (DAGNÄ), a society of doctors that exchange their knowledge on recent research and treatment methods.
Working in Berlin means working in Germany’s HIV capital, since the city has the highest absolute number of new infections every year (but per capita, ranks third behind Cologne and Frankfurt). AIDS in western countries is a big-city phenomenon, because that’s where the high-risk groups live: gay men and drug addicts.
The ‘but’ becomes clearer when Mayr starts lecturing about possible side effects of the medication: diarrhoea, insomnia, fatigue, exhaustion, depression. If patients become sloppy about administering HAART, the virus can develop resistance towards one medication, which means changing it and going through the difficult process of finding a new combination of the three different substances that are currently used for treatment.
Dan calls it “the cocktail” – he takes it nightly. He had his medication changed recently because he woke up at 3am every night and felt depressed during the day.
Immediate side effects are not what worries experts the most though. Based on the average male lifespan, a 20-year-old who is diagnosed today has 58 more years to live if he takes the pills that Mayr calls a ‘chemotherapy’.
And yet: “We have only worked with the modern medication for 10 years,” says Mayr. “There are actually no empirical studies yet that could show what long-term effects might occur.”
And then there are all the follow-up diseases. Pneumocystis jiroveci, a severe form of pneumonia that preys on weakened immune systems, is one of the most common secondary infections. HIV positive patients have also shown a higher risk of getting infected with hepatitis C.
“What it comes down to,” says Mayr, “is that there is no cure, yet.” Nor is there a vaccine.
Though there have been some hopeful developments. In 2007, Gero Hütter, a Berlin-based haematologist, ‘accidentally’ cured Timothy Ray Brown, an American who will go down in medical history as the ‘Berlin Patient’. In addition to being HIV positive, Brown had leukaemia (studies have shown an above-average rate of cancer amongst those with HIV). Hütter performed a bone marrow transplant, a high-risk treatment. Afterwards, HIV could no longer be traced in Brown’s blood.
Yet experts say the case is an anomaly and that scientists are as far away from a cure as before. The bottom line: in 21st-century Berlin, people still die of AIDS.
Unprotected gay sex still to blame
The only sure method, of course, is not to get HIV at all. That’s why organisations like Berliner Aids-Hilfe still stick to the classic claim they have been making for years: “Kondome schützen”. Uwe, 42, an employee of Berliner Aids-Hilfe and a “HIVchen” since 2002, specifies: “Condoms are the only means to protect yourself from AIDS.”
According to a survey by the Social Science Research Center Berlin (WZB), over 70 percent of men in the city who have sex with other men say they practice safe sex. In other words, an alarming 30 percent of the group shown to be the most at risk (90 percent of last year’s new infections were contracted through men having sex with men) are not taking precautions to protect themselves from the disease. This is one explanation for the persistently high number (around 500) of new HIV infections in Berlin every year.
And stories like that of Dan’s young Italian acquaintance are not so rare. Mayr estimates that 50 percent of the 3000 annual new infections in Germany get diagnosed too late, because the patients didn’t belong to a risk group and were therefore careless, or they simply suppressed the notion.
It’s no wonder that doctors and HIV positives (even those who, like Dan, live a relatively normal life) shake their head when it comes to a phenomenon like ‘bug chasers’, meaning people who are out there literally searching for the virus.
To a certain point, Dan says, he can understand some of the feelings these people must have. When he got his positive result back in 1994, he says he was actually relieved: “I thought it was inevitable. So I was glad that I was done with the uncertainty about when it would happen.” It’s a common reaction, as he found out later when talking to a psychologist.
But a look at the bug-chaser scene leaves a very bitter aftertaste: in their language, getting infected is colloquially referred to as ‘pozzing up’, bareback parties for HIV positives are secretively organized by a group that calls itself ‘Biohazardmen’, and the possibility of infection lends a new thrill to sex.
Luckily, bug chasing seems to be more of a deranged but marginal phenomenon than a wider trend: neither at Berliner Aids-Hilfe nor at Mayr’s practice in Wedding is there any evidence that bug chasing poses a serious threat in Berlin.
Most HIV positives would not risk contracting other sexually transmitted diseases, which would aggravate their own fragile health conditions. No one has more to lose through unsafe sex than someone with a compromised immune system.
An HIV-positive sex life
Dan says that when it comes to potential sexual encounters, he comes clean about his condition as soon as possible. But that doesn’t mean it’s an easy subject to navigate. Once a guy threw a fit in a bar because Dan told him he was positive only after they had already kissed. Uwe from Berliner Aids-Hilfe says he once received multiple angry, devastated and reproachful emails, after an HIV-negative man with whom he had practiced safe sex found out about Uwe’s status.
It’s not easy to come forward about a disease that’s shrouded in misconception. “People are still so ignorant,” Uwe says. He can’t remember how many times he has explained to someone that going to the same toilet as he does or drinking from his glass is not dangerous at all.
And he still won’t tell his family: he doesn’t want to worry his parents, and he’s afraid his brother wouldn’t let him play with his kids anymore.
And ever since German pop singer Nadja Benaissa was charged with assault for having unprotected sex with three men without informing them she was HIV positive, people with the virus have to fear legal charges, a fact that makes someone like Uwe angry. “It’s everybody’s responsibility to stay negative,” he says.
Dan has a husband. The two got married during the five-month period in 2008 when California law allowed it. After same-sex marriage got banned yet again, the couple left the States. Dan’s husband is a Swede who’s also HIV positive.
They picked Berlin for the obvious reasons: it’s “a great, cheap city”, as Dan sums it up. As soon as he got a job here, Dan slipped into the German healthcare system, which is now paying for his doctor visits and medication.
Never, he says, would he have thought that he would live this long, that he would ever turn 46. The waiter brings the bill. Dan takes it, stretches his arm far out and squints his eyes. “I forgot my reading glasses,” he says with a smirk. “Oh yes, the joys of getting old.”