This year it will be forty years ago that the first person in the Netherlands died of AIDS. A lot has changed since then; for example, the diagnosis of HIV no longer equates to a death sentence. We asked several people what it still means to live with HIV today.
Door Sarah SitanalaAIDS is the final stage of HIV infection. The body’s immune system is then no longer able to fight infections and other diseases properly. “HIV is a virus,” says professor Marc van der Valk, internist-infectiologist at Amsterdam UMC and board member at the HIV Monitoring Foundation. “It settles in a specific cell of your immune system, weakening your defenses.”
HIV is sexually transmitted and can also be passed on through blood-to-blood contact. “Many people with HIV have symptoms that are consistent with a severe flu shortly after the infection,” says Van der Valk. “Often accompanied by rashes and swollen lymph nodes.”
Although we now have a whole arsenal of methods to prevent the transmission of HIV, more than four hundred people are still diagnosed with HIV in the Netherlands every year. This is partly due to a lack of awareness, thinks Van der Valk.
According to him, there are certain diseases for which an HIV test should be done as standard. “Think, for example, of the sexually transmitted diseases syphilis and gonorrhea. There is certainly still room for improvement.” The fact that, according to him, this is not happening enough is partly due to the taboo that still rests on HIV.
There were no drugs
Marjolein Annegarn recognizes that (photo). As a photographer she showed her Stigma Project, with photos of people who have not yet dared to come out with their HIV. Annegarn, now 59, was diagnosed with HIV when she was 24. “I had registered as a blood donor, but turned out to have abnormal determinations in my blood. I had never even thought of HIV before that.”
If it had lasted two weeks longer, I wouldn’t have been here.
“At that time it was still a death sentence, there were no drugs. I was told I probably wouldn’t make it to 30.” When the first drugs came on the market in 1996, Annegarn weighed only 42 kilos. “If it had lasted two weeks longer, I wouldn’t have been here.”
Since 1996, life expectancy for people with HIV has been increasing. And although patients sometimes had to take thirty to forty pills a day, now in most cases one pill a day is sufficient. In addition, there are HIV inhibitors, also known as the HIV prevention pill prep, to prevent infection with the virus.
Fear of contamination was great
Marieke Been experienced these changes in the medical field up close. Been is a social psychiatric nurse for people with HIV at GGZ inGeest and started in 1986 as an HIV nurse at the AMC. “In the beginning we had no idea what we were dealing with. It was very poignant, a lot of people died.”
There was a time when we had to explain to caregivers that you couldn’t get it by sitting on the same toilet seat or drinking from each other’s cups.
Been says that during that time various nurses, doctors and organizations championed the importance of medical research. “It soon became clear that the virus is sexually transmitted, among other things, but there was also a time when we had to explain to healthcare providers that you couldn’t get it by sitting on the same toilet seat or by drinking from each other’s cups.”
At that time, the fear of contamination was great. “We didn’t know how much was needed for transmissibility. Was one drop of semen or blood enough?” Although much more is known today about the degree of transmissibility, and life expectancy is now equal to that of people without HIV, there is still a lot of ignorance. Annegarn: “Sometimes I have to tell a nurse that double gloving is not necessary.”
Anyone can deal with it
This is not only the case among the population, but also among healthcare providers. It is partly the root of the taboo, thinks Been. “It’s about (gay) sex, contagiousness and death, these are all ingredients associated with taboo and stigma. While HIV is not only spread among homosexuals. It is a sexually transmitted disease that can affect anyone, including heterosexuals.”
I haven’t led a wild life at all, and even if I had, everyone has sex.
Van der Valk says that men who have sex with men are more likely to be tested. “There seems to be more awareness among them, but the HIV diagnosis is still far too late for 40 percent. For heterosexual men and women, it is about 70 percent.” According to Van der Valk, this has not only to do with the stigma, but also with not recognizing complaints.” For many people it is not part of their lives, says Been. “That makes it easy to keep it far away. until you have to deal with it.”
Annegarn still can’t believe she’s almost sixty. “Maybe that’s why I became an activist, because I feel that I have to do something with the extra years that I have been given. Also because I still have the idea that people with HIV are looked at strangely. But I don’t have any led a wild life, and even if I had, everyone has sex. My mission is not only to pass on that knowledge, but also to help people with HIV stand more firmly in their shoes.”
From August 19 to September 9, 2022, the exhibition House of Hiv can be seen in Amsterdam, which looks back on forty years of living and coping with HIV.
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