There are 158 HIV positive men and women and 23 persons diagnosed with AIDS living in Iceland right now. Thirty-seven people in Iceland have died of the virus. HIV and AIDS have inflicted one person for every 1,466 on this small island and touched exponentially more through family ties, friendships and acquaintances.
Still, it’s difficult to imagine receiving such a diagnosis or learning that your loved one has. The sensationalised face of HIV and AIDS that has been imprinted on the public’s common mind—a frail and fragile homosexual male, confined to a strict regimen of medications, sentenced to death—is terrifying when imagined on a sister, brother, parent, friend, anybody.
This stereotypical image is one that the media seeks out, for impact, when covering the disease. It’s also an exaggerated image that HIV Ísland is trying to correct. “On AIDS day 2008, it was our 20th anniversary so our project manager and I offered interviews to local media,” explained Gunnlaugur I. Grétarsson, President of HIV Ísland. “But they didn’t want interviews with us. They wanted somebody who looks like he has AIDS. They want somebody gay looking and sick looking because that’s the image of the disease. They don’t want healthy looking straight guys to be on TV, talking about AIDS. It doesn’t sell.”
“All media are looking for dramatic stories. So they try to find a small baby girl, the only positive child in Iceland, and try to put her in the tabloids. We want them to tell our story as a positive one. We want to remind people that there is life with HIV.”
Since its establishment in December 1988, HIV Ísland has ventured not only to change the face of HIV in Iceland but also to support those diagnosed with HIV and their families and to educate the public. “At our office here we have a social worker that comes in with whom people can talk about their issues and we have an open house so people can come and sit down and meet others,” explained Einar Þór Jónsson, project manager of HIV Ísland.
While the services are in place to help HIV positive people and their families in Iceland deal with the situation in which they have found themselves, it sometimes takes years for those affected by the virus to come forward to seek help.
“People contact us after a couple of years dealing with the disease, the first years people tend to isolate themselves a lot,” said Gunnlaugur. “They might seek counselling from a social worker but they have a really hard time getting into support groups and coming down to our home and meeting other HIV positive people. They have a really hard time getting to that point and getting out of the HIV closet.”
Taboo and prejudice
One reason that HIV positive people find it difficult to be candid about their condition with the general public or even their friends and family is the social stigma attached to the infamous acronym. When HIV and AIDS came to prominence in the early 80’s— the first diagnosis in Iceland was in 1983—it was considered to be a disease that inflicted homosexual men alone. Now that HIV is more of an equal opportunity attacker—12.4% became infected through intravenous drug use, 37% through heterosexual contacts and 45.4% through homosexual contacts—it is still difficult for patients and the general public to shake the stigma and make the mental shift toward accepting HIV as something other than a “gay disease.”
“I think the biggest problem was and still is the prejudice of the person being diagnosed, the patient himself,” said Gunnlaugur. “They expect that society is going to judge them so they have prejudice toward themselves. They believe their friends and family will look at them as a junkie or a homosexual or a prostitute and they categorise themselves with these people and they feel dirty and contagious.”
While Gunnlaugur is not HIV positive himself, his co-worker at HIV Ísland, Einar, is and agrees that the taboo attached to HIV in Iceland and elsewhere in the world makes it sometimes difficult to open up about the virus. “Socially it is very difficult to be HIV positive. Most people prefer not to tell at their work places, or the people with whom they socialise at work or in their free time. They don’t discuss it publicly. Like if you are diabetic or have some other kind of chronic disease you would tell people ‘ok, I am diabetic and I have to do this and that’ but people with HIV don’t do that.”
Knowledge = Prevention
A key weapon in combating the self-depreciating feelings of those diagnosed and the stereotypes of the masses is education. If the public is more knowledgeable about the virus the thriving misconceptions about the infected population are more likely to be eradicated. Likewise, increased awareness of the virus and its transmission would do much for containing the virus and slowing or ceasing its spread in Iceland and worldwide.
“In terms of prevention we have for the last seven years had a program running where we go to all elementary schools in Iceland and we give education about HIV and all types of sexually transmitted diseases,” explained Einar. “We’ve received support for doing these school visits [which aim to reach all 15 and 16 year olds in Iceland] from the Directorate of Health and the Health Minister here so it’s very well prepared and well supported.”
Access to information, like that being provided by HIV Ísland to Iceland’s school children and to the general Icelandic-speaking public on hiv-island.is (and countless other websites and publications in all languages devoted to disseminating information on HIV and AIDS as a means of prevention and awareness raising), is invaluable and is something that has developed slowly over the years since the official start of the worldwide AIDS epidemic in June, 1981. Gunnlaugur credits the increased availability of information on HIV as one of the most significant changes that has taken place in the past years, saying that it was quite difficult to get information about the virus at the time when his father was diagnosed in 1988.
Life with HIV/AIDS
Developments within the medical community since HIV and AIDS were first encountered have made living with the virus significantly more manageable. “The biggest change in my life has been discovering medications that keep the illness stable,” said Einar. “Medication is very different among individuals. I, for example, take three different medications twice a day.”
Highly active antiretroviral therapy (HAART) medications, different from one patient to another and varying among stages of the virus, have significantly improved the outlook for HIV patients in parts of the world where such treatments are available. While without treatment of any kind the prognosis of a newly infected HIV positive person is 9 to 11 years, HAART treatment has doubled that to twenty years.
HIV is manageable and as more is learned about the virus among the medical community and more information is dispersed among the public, it may shake its stigma, shed its image of fragility and death and those diagnosed will be able to live. Said Einar: “most HIV positive people are capable of living a normal life now; we just take our medicine and live our lives.”