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Living with HIV

Jeanette Seiffert / reNovember 30, 2013

Thanks to advances in pharmaceuticals, HIV-infected people today can continue to work and lead a normal life. But many still have to fight against prejudice and discrimination.

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Red AIDS ribbon (Photo: Jan-Philipp Strobel/dpa)
Image: picture-alliance/dpa

"I took the bull by the horns," 48-year-old Holger said about how he told his employer about his HIV infection when ten years ago. He was lucky: His former boss reacted calmly. Holger's frankness did not hinder his career. On the contrary, today he is the boss of a fundraising agency for charity organisations.

Physically, Holger is doing well. Once a day he needs to take a pill. The medicine prevents him from catching potentially deadly secondary diseases. Holger says he is as productive as before. But still, a lot changed for him since he discovered he was HIV-positive. "You care more about yourself - for example you take care that you don't get too stressed," he said.

In the past, a diagnosis of AIDS was a death sentence. Just twenty years ago there were no ways to contain the disease. Once infected, people often died within a matter of months or years. Or they had to live with significant limitations. Eighteen years ago when Angelika was told she had HIV, it came as a shock to her.

HIV-positive businessman Holger
HIV-positive Holger has had no AIDS-related problems during his working lifeImage: BZgA

At the time, antiretroviral therapy, commonly used today, did not exist. Ten years ago the now 55-year-old had to give up her job in a drug counselling office. Since then she has drawn a pension due to her inability to work. "Because of my HIV infection I didn't feel well for quite some time. I choose this way to get some rest and regain power," she said.

A normal life expectancy but not a normal life

Thanks to these drugs, HIV-positive people in Germany have a life expectancy close to the average. And when everything goes well and there are no complications, their quality of life is not much different from that of a healthy person.

Two-thirds of the around 50,000 people HIV-infected in Germany work in normal jobs. And it could be even more if they did not have to fight against exclusion and discrimination, says Michael Izdebski, director of the German AIDS Service Organization: "People with HIV have a normal life expectancy - but they don't have a normal life, because they are victims of stigmatization," he said.

For 30 years the organization has helped people with HIV cope with their disease. It previously focused on informing the public about HIV and preventing its transmission, but today the majority of Germans know the important facts about the virus and the infection rate has declined substantially. With around 3,000 new infections a year, Germany has one of the lowest infection rates in Western Europe.

A Truvada (emtricitabine/tenofovir disoproxil fumarate) capsule (Photo: EPA/GILEAD SCIENCES HANDOUT)
Thanks to drugs, HIV-positive people can lead a normal lifeImage: picture-alliance/dpa

New therapy, old prejudices

But because just one in 1,000 employees is infected with HIV, the degree of insecurity among the population is high, says Izdebski. Many HIV-positive people do not have a job because employers fear they will get sick more often.

"This has to do with old beliefs that are still in their heads," said Izdebski, who works at a local AIDS counselling office beside his job as director of the German AIDS Service Organization. "If an employer thinks he is hiring someone who is seriously ill and might die soon, that's understandable. But that's not longer the case," he said.

Campaigning for a better work environment

During this year's campaign for World AIDS Day, "ambassadors" like Holger appear on posters that spread the message that HIV positive persons depend on the solidarity of those around them. In addition, the German AIDS Service Organization launched its "HIV in the working environment" campaign a year ago. Participating companies like Ford, Ikea, Deutsche Telekom and the NH hotel chain pledge they will help HIV-positive people lead a normal working life.

Manuel Izdebski, German AIDS Service Organization board member (Photo: Johannes Berger)
Manuel Izdebski wants the law on equal treatment to also cover the chronically illImage: Johannes Berger

But for Izdebski, a voluntarily commitment is not enough. He demands that the German law on equal treatment, which bans discrimination against homosexuals and the handicapped, should also apply to chronically sick people like those with HIV. The law "provides important protection against discrimination, especially in the workplace," he said.