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HCV, can we have one united front?
This question centers around the "stigma" that is attached to the HepC virus and what are we willing to do about it to start a movement which is actually moving forward? To adequately get to the bare bones facts about this virus we have to look at some variables. First question is who is contracting this virus? In comparison to the HIV virus which was proven to be a gay "male" disease. This virus has more people who are stretched across a wider spectrum or divide, you have one category which is predominately IV drug users, then you have a class on the complete opposite side of the spectrum like "non risks" individuals. Also, you have eveyone else caught in the middle who doesn't fit into any of these two catagories, but nonetheless they are infected wih HCV as well. Anyways for time constraints let's just stick to the most troublesome, "the big divide". My point is very clear, what are we gonna do to have these two catagories become one united front? God Bless
Here's a point to ponder...
WHY is the treatment so expensive?
Percocets are created in a labratory... And I can get 30 of them for 7 bucks at the pharmacy... LMAO!
But Interferon - 1400 for 4 shots... Hmmmm something doesn't add up.
And before I even say ANY more...
Ponder this:
If a disease is cured --- it's a ONE TIME shot. One time fee.
But if you treat it --- chronically --- you make a lot more money with multiple shots and treatments.
Interesting - no?
WHY is the treatment so expensive?
Percocets are created in a labratory... And I can get 30 of them for 7 bucks at the pharmacy... LMAO!
But Interferon - 1400 for 4 shots... Hmmmm something doesn't add up.
And before I even say ANY more...
Ponder this:
If a disease is cured --- it's a ONE TIME shot. One time fee.
But if you treat it --- chronically --- you make a lot more money with multiple shots and treatments.
Interesting - no?
Sorry I didn't get my point across, I wrote the post around 4:am when I couldn't get to sleep, then I deleted a bunch of it cause I felt it was too long, obviously I didn't edit it very carefully. Yeah I had originally included that celebs helped out the HIV movement fairly quickly and helped to remove or at least subside, the ugly things that were being said about it. On the HCV front the only ones who have spoken out were Pamela Anderson who brought nothing, but bad press with her accusation that the bad man, Tommy Lee had given her the dreaded virus. Naomi Judd brought on a positive light to HCV, but fell short as far as any public awareness. She announced that she was going to retire b/c she was ill with the HepC virus and that was it. Correct me if I'm wrong, but those are the only two celebs who have ever shedded any light on our illness, that I remember. We need some celebs to help in the awareness that regular people get this virus, not just drug addicts. This forum has the attitude that it doesn't matter how or when you caught it, you're here now and were all in this battle together. Now that's positive! I wished more people felt that way, but as you can see that idea is still just a wish. Oh by the way, I am not saying that nobody has helped the HepC movement b/c there are quite a few bands who play benefits, often. With that said, why do you think more celebs haven't stepped up to the plate to raise public awareness? Could it be because of the "big divide", I was speaking of? I heard that 80% of those infected with HepC are drug addicts, could that be the reason that nobody famous wants to speak up? Hey if I'm just plain wrong, correct me as I enjoy learning or I wouldn't be here.
God Bless
God Bless
I believe the reason why HIV has gotten the support from celebs that it has is because everyone knows someone who is gay, and accepts them and their partner as two people that love each other. IV use on the other hand is not an accepted behavior.
We live in a society that stigmatizes everything. HIV – you must be gay, HCV – you’re a junky, colon cancer – you eat junk food, and my favorite lung cancer – you put the nails in your own coffin. I think Christopher Reeves’ wife Diana, I think that’s was her name, was the first person that ever had pubic attention of not smoking and dieing of lung cancer, so the media came up with that she burnt leaves.
Sorry got side tracked; I do that a lot lately.
Any way I think people stigmatize diseases in order to distance themselves, cause if it appears as though a behavior is the cause of a disease and you don’t behave in that fashion your safe from the disease so why should you think or even worry about it.
Until celebs or CEO’s wives are getting HCV from having their nails done, I don’t think the stigma will leave.
Annie
We live in a society that stigmatizes everything. HIV – you must be gay, HCV – you’re a junky, colon cancer – you eat junk food, and my favorite lung cancer – you put the nails in your own coffin. I think Christopher Reeves’ wife Diana, I think that’s was her name, was the first person that ever had pubic attention of not smoking and dieing of lung cancer, so the media came up with that she burnt leaves.
Sorry got side tracked; I do that a lot lately.
Any way I think people stigmatize diseases in order to distance themselves, cause if it appears as though a behavior is the cause of a disease and you don’t behave in that fashion your safe from the disease so why should you think or even worry about it.
Until celebs or CEO’s wives are getting HCV from having their nails done, I don’t think the stigma will leave.
Annie
Good thread, too tired to post much right now tho :( Hope I remember my thoughts tomorrow ?!
Fretboard, yes, with Pamela Anderson as our 'leader' in awareness, we're screwed!
One point tho, in that "80% of those infected with HepC are drug addicts".……
I don't think that can be right for one and also, in their statistics, calculating on this, I would be listed as contracted thru IV use (we THINK??) adding to that figure while the actuality is that I tried drugs when I was a teen, was never an addict in any way-except nicotine- became anti, fighting against drugs and 30 years later got dx'd with Hep C with the probability /risk factor being that short term trial period. I am sure there are many of us that happened to, yet the statistics will fall into 'addict' thus adding to that “oh they did it to themselves’ BS attitude. NOT saying anything against anyone that has fought with/been an addict-my heart goes out to that fight-but we all know the world doesn’t see it that way, as they didn’t with the ‘gay men’ disease . HIV is still very much a ‘stigma disease’ also, tho many more are involved in awareness, fighting that stigma than are with Hep C. I lost a few friends to HIV when it was first being discovered, during the 'a gay men only disease' times, it broke my heart to see how people shunned them, avoided them, treated with disgust, that once were their 'friends'.
When I got dx’d, many I told were … ’not YOU???”…..the stigma leaning towards “YOU did drugs”? , as I’m well known for my anti drug antics, fighting, etc. therefore….that stigma is more towards the drug use than the disease itself. Make sense ? (brain dead, wording is all off!)
Truthfully, like Nygirl said , until it hits close to home, most aren’t going to change that attitude. BUT, in my own dx and tx, many have 'learned' more thru me now, so times that times each one of us that make more aware and hopefully, over time, that alone will help.
Here tho, I don’t believe we (most of us I think) have a 'divide'….as it should be.
Stigma is ignorance, not fear.
LL
Fretboard, yes, with Pamela Anderson as our 'leader' in awareness, we're screwed!
One point tho, in that "80% of those infected with HepC are drug addicts".……
I don't think that can be right for one and also, in their statistics, calculating on this, I would be listed as contracted thru IV use (we THINK??) adding to that figure while the actuality is that I tried drugs when I was a teen, was never an addict in any way-except nicotine- became anti, fighting against drugs and 30 years later got dx'd with Hep C with the probability /risk factor being that short term trial period. I am sure there are many of us that happened to, yet the statistics will fall into 'addict' thus adding to that “oh they did it to themselves’ BS attitude. NOT saying anything against anyone that has fought with/been an addict-my heart goes out to that fight-but we all know the world doesn’t see it that way, as they didn’t with the ‘gay men’ disease . HIV is still very much a ‘stigma disease’ also, tho many more are involved in awareness, fighting that stigma than are with Hep C. I lost a few friends to HIV when it was first being discovered, during the 'a gay men only disease' times, it broke my heart to see how people shunned them, avoided them, treated with disgust, that once were their 'friends'.
When I got dx’d, many I told were … ’not YOU???”…..the stigma leaning towards “YOU did drugs”? , as I’m well known for my anti drug antics, fighting, etc. therefore….that stigma is more towards the drug use than the disease itself. Make sense ? (brain dead, wording is all off!)
Truthfully, like Nygirl said , until it hits close to home, most aren’t going to change that attitude. BUT, in my own dx and tx, many have 'learned' more thru me now, so times that times each one of us that make more aware and hopefully, over time, that alone will help.
Here tho, I don’t believe we (most of us I think) have a 'divide'….as it should be.
Stigma is ignorance, not fear.
LL
Until celebs or CEO’s wives are getting HCV from having their nails done, I don’t think the stigma will leave.............
Thought many times about the many 'sweat shop' nail salons I went to and how many times they cut me, I bled.....in the sense that I could have gotten it there also, and the sense that if I had it then, how many did they cut after me and pass it to!
LL
Thought many times about the many 'sweat shop' nail salons I went to and how many times they cut me, I bled.....in the sense that I could have gotten it there also, and the sense that if I had it then, how many did they cut after me and pass it to!
LL
There's been alot of good points brought up, oh and I've also lost friends to both HIV and HCV and I just want to make that clear. I'm not homophobic as my initial post makes me sound, and I'm not ignorant to HIV. Was I actually right about Pamela Anderson and Naomi Judd being the only celebs to ever speak up? Actually I think there was maybe one more, but that obviously fell short cause it looks like nobody else remembered them either. I actually know one lady who is not an exIVer, well I know alot more than that, that didn't sound right.lol Anyways, I know on one of my other posts that I brought up this topic before. My wife has a friend and she has HepC, she's in the teleprevir study that's going on at UCD in my area and she doesn't have to deal with the stigma much at her job. I know there were others who also said that people are really supportive once they are educated. So how do we raise money to educate the public? Man, this whole topic seems to be going in one big circle. Oh well maybe somone else will come on this thread and say something. I just can't come up with any ideas on how to close that divide, or how to educate the public. Oh, I remembered one thing I wanted to comment on, but I just forgot what it was, I'll be back.lol Oh, I know what it was, if we have to wait for everyone in society to know someone who has contracted HCV before they're educated, that is not acceptable. Well, I've decided what I can do about it, when the subject comes up at work or something and I ever hear someone say something ignorant about HCV, then I'm gonna have to jam them up and tell them what's on my mind. Prior to thinking about it I have let stuff like that go because, well I'm an exIVer and believe it or not I am honest. In this case I will have to pscych myself out a bit, I have let a couple of comments go because I didn't want to share how I would know anything about HCV if I didn't have it or have never used drugs. Really it's nobody's business how I know anything about anything and it's nobody's business how I got HepC. See I did learn alot from my post, anyways I gotta run and get a little more sleep. God Bless
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