|Louis Gay and Kim Fangen|
Since The Organization Pluss was abolished in 1999, we lost the only broad, national organization by and for people living with HIV in Norway.
- This huge loss in the Norwegian HIV-work field all these years, we have now sealed, says Kim Fangen and Louis Gay, chairman and deputy chairman of the Patient Network board of directors.
By Tom Ovlien.
(translated by Louis Gay)
På norsk her:
The Patient Network for HIV was formalized this summer and is now officially registered with a board of directors and provisional constitution as an organization by and for people with HIV.
Kim Fangen is chairman and Louis Gay is deputy chairman until the first annual general meeting is held and a new board elected.
- With this, we have finally managed to close a huge gap that occurred after the Norwegian HIV organization Pluss was closed in 1999, Kim Fangen says.
- With it disappeared the most important voices of HIV positive with different backgrounds like: women, heterosexuals, immigrants and men who have sex with men - had to the government and society in Norway.
So good to meet Your own peers.
Kim says that one of the first things that struck him when he was diagnosed nearly ten years ago was how alone he was as HIV positive.
- However after a year and a half after I came out as HIV positive I meet a HIV positive from Australia who said that they had their own organization there.
Soon after I went visiting Australia. It was amazing. It felt liberating. It was so good to meet Your own peers.
That's why we want to create this new organization, which we now call the Patient Network.
There Is almost none HIV positive in the other organizations nor on the boards of directors in these organizations.
- So this is primarily an organization for the social needs of HIV positive to have a meeting place?
- No, says Kim and Louis. - This is both HIV politics and a place to meet other people with HIV, points both of them out.
- I've only been involved in the HIV work for barely seven months and only been HIV positive since 2010, says Louis.
- One of the things I discovered when I meet the field of HIV organizations during this time is that there was almost no HIV positive people in these organizations.
I meet many well-meaning, wise and ambitious HIV negative who would like to do positive things, but unfortunately it is often slightly deficient, based on lack of knowledge and at worst directly hollow.
For example, talk about stigma, HIV negative simply don´t understand what this is and what it means for us living with HIV.
You must feel it in your body, to understand this.
I felt I have spent much time and effort trying to raise awareness among HIV negative, so they don't cause us more stigma, when they think they are helping us, he says.
Kim tells that the most important for the Patient Network right now is to start to reach as many as possible.
We need to initiate communication. We need to develop cooperation with hospitals, infection medical personnel, medical students, now working in the field.
All HIV positive groups must be included: immigrants, women, transsexuals and men who have sex with men.
Already there have been initiated sessions and mastering courses in some departments, a work that must be monitored at all hospitals and clinics dealing with this challenges.
Norway must become more results-oriented within the hiv field nationally.
- What do you think must be added to the new policy in the HIV field?
- Internationally, there is plenty of resources, important networks that we have in the Patient Network, is a little ignored in Norway.
We are not so good at listening to others' experiences or invite them here to learn, despite the fact that in Norway doesn't have a lot to brag about in HIV field in the past ten years or more.
We are not exactly the smartest boy in class either on prevention, non-discrimination or organization.
We must become more result-oriented at home, see what we actually can achieve in order to prevent both infection and stigmatization.
Louis Gay says he looks at the creation of a secure framework for engagement as the key to creating change.
- We must have safe venues for HIV so that we can participate in public debate ourself as positive people to better the current situation.
General Risk or harmless?
- There are too many units and too many double messages.
It must be improved so that politicians don´t speak with one voice, our doctors with another, and judges and lawyers with a third.
Science and medicine say that we as well treated patients due to medication are harmless in the context of infection, the lawyers on the other hand that we are a public danger to society.
Kim adds that people living with HIV today are an untapped resource in the prevention and other purposes.
- Government, communities and society need our voices, completely unfiltered, says the two.