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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
Just wanted to add this comment as well .... when you look at this part of the article that says:
* HCV is spread through blood-to-blood contact – Many adult Americans (32 percent) incorrectly think HCV can be spread through fecal contaminated water or food; 42 percent of Americans do not know that hepatitis C can be contracted through any contact with infected blood.
That's 42 percent of people that do not know this is a blood to bloodstream transmitted disease. That's 42% of people who potentially think that HCV can be transmitted through any number of ways other than how it IS contracted. There would be a certain amount of fear generated when someone reveals they have HCV and would result in stigma based on fear of them catching it themselves.
The stigma isn't only that we'll be considered to have engaged in "unsavoury" practices ... but that we're causing risk to others just from being around them. That, to me, is the HARDEST stigma to combat. And again, the only way to deal with that.. is education.
Take care.
Trish
* HCV is spread through blood-to-blood contact – Many adult Americans (32 percent) incorrectly think HCV can be spread through fecal contaminated water or food; 42 percent of Americans do not know that hepatitis C can be contracted through any contact with infected blood.
That's 42 percent of people that do not know this is a blood to bloodstream transmitted disease. That's 42% of people who potentially think that HCV can be transmitted through any number of ways other than how it IS contracted. There would be a certain amount of fear generated when someone reveals they have HCV and would result in stigma based on fear of them catching it themselves.
The stigma isn't only that we'll be considered to have engaged in "unsavoury" practices ... but that we're causing risk to others just from being around them. That, to me, is the HARDEST stigma to combat. And again, the only way to deal with that.. is education.
Take care.
Trish
It seems that the HCV community is all united when it comes to treatment and dealing with HCV. The general rule here and elsewhere is that it doesn't matter where you got it, we're all in this together and I see that in play very well in this forum.
We ARE united in helping each get through treatment and living with HCV in whatever way a person chooses to do that.
The divide happens, it seems, when we're talking about going public and I agree with nygirl7 on that. Suddenly, then it matters where it came from, even if it shouldn't. Take, for instance, that the HCV community itself would feel better if we had more publicly acceptable spokespersons, not those rockstars and such. If we mean what we say, that it doesn't matter where you got it from, we're all in this together... do we mean, "well, everybody but YOU people, because you make us look bad" ? Are we stigmatizing our own by doing this? I hope not.
I think the trick is to keep the message from getting lopsided in any ONE direction. You can't escape the transmission of HCV via IV drug use when talking about Hep C and nor should you. Young people need to hear that and people using need to hear that. But nor should it be ALL about that or it really puts the public at risk. The rates of HCV seem to be going up. That's a real problem, seems to me. The largest incidence of liver transplants are due to HCV. There are so many ways of transmission and the public needs educating - people who don't know they have HCV are apparently considered to be in the great majority of persons who have it, I've seen percentages from 70% and higher. If people don't know the risk factors, they won't get tested.
I found this interesting article, and after reading it, I believe it's either the same one or part of one that Mr. Liver quoted on the "other side" in a similar type thread.
http://www.gastro.org/wmspage.cfm?parm1=420
Some quotes from this article:
A Need to Reinforce Truths:
The survey of physicians, people with HCV and the public revealed lack of awareness of the facts about HCV and some new truths:
* HCV is spread through blood-to-blood contact – Many adult Americans (32 percent) incorrectly think HCV can be spread through fecal contaminated water or food; 42 percent of Americans do not know that hepatitis C can be contracted through any contact with infected blood.
* No vaccine for hepatitis C exists – Twenty percent of Americans and 15 percent of hepatitis C sufferers believe there is a vaccine for the disease.
A Need to Shatter Myths:
* The stigma attached to hepatitis C is far less than those infected think – Although 74 percent of hepatitis C sufferers believe that most people think that the disease mostly afflicts drug addicts and people with unhealthy lifestyles, only 30 percent of the public actually holds this belief. Only 12 percent of the general public believes that people like themselves don’t get diseases like hepatitis C.
Now.. that 30% is alot lower than I would have thought .. yet 30% of a population is still a significant number of people who will think this way. In a room of 100 people, 30 of them will think a person with Hep C contracted it through IV drug use.
We're never going to successfully combat stigma. As a people, unfortunately, we all engage in it. I feel badly for obese people who are judged simply on the way they look and the person they are is ignored.
What we can do is reduce stigma through education. So maybe it doesn't require ALL of us to put a face on HCV. Maybe it simply requires ALL of us to educate where we can and do what we can.
There is some really good information in that quoted article... and I think this comment perhaps addresses your question:
"Since my diagnosis with hepatitis C in 1999, I have been dedicated to sharing my story and encouraging others to do the same so that we can bring the attention to this disease that it deserves," said David Marks, original Beach Boy and the official Be Hep C S.M.A.R.T. campaign spokesperson. "Until people with hepatitis C unite and speak up, this disease will remain a silent epidemic."
That's one thing ... but I also think the medical community could help us out with this. Family physicians are woefully uneducated about HCV. The medical community needs to address this. GI's and Hepatologists need to take some responsibility here. That is my personal opinion.
Wow fret .. you really make a girl think ...leading me to do some reading that is incredibly interesting and lots of pondering going on in this peabrain of mine over this question of yours!!
Trish
We ARE united in helping each get through treatment and living with HCV in whatever way a person chooses to do that.
The divide happens, it seems, when we're talking about going public and I agree with nygirl7 on that. Suddenly, then it matters where it came from, even if it shouldn't. Take, for instance, that the HCV community itself would feel better if we had more publicly acceptable spokespersons, not those rockstars and such. If we mean what we say, that it doesn't matter where you got it from, we're all in this together... do we mean, "well, everybody but YOU people, because you make us look bad" ? Are we stigmatizing our own by doing this? I hope not.
I think the trick is to keep the message from getting lopsided in any ONE direction. You can't escape the transmission of HCV via IV drug use when talking about Hep C and nor should you. Young people need to hear that and people using need to hear that. But nor should it be ALL about that or it really puts the public at risk. The rates of HCV seem to be going up. That's a real problem, seems to me. The largest incidence of liver transplants are due to HCV. There are so many ways of transmission and the public needs educating - people who don't know they have HCV are apparently considered to be in the great majority of persons who have it, I've seen percentages from 70% and higher. If people don't know the risk factors, they won't get tested.
I found this interesting article, and after reading it, I believe it's either the same one or part of one that Mr. Liver quoted on the "other side" in a similar type thread.
http://www.gastro.org/wmspage.cfm?parm1=420
Some quotes from this article:
A Need to Reinforce Truths:
The survey of physicians, people with HCV and the public revealed lack of awareness of the facts about HCV and some new truths:
* HCV is spread through blood-to-blood contact – Many adult Americans (32 percent) incorrectly think HCV can be spread through fecal contaminated water or food; 42 percent of Americans do not know that hepatitis C can be contracted through any contact with infected blood.
* No vaccine for hepatitis C exists – Twenty percent of Americans and 15 percent of hepatitis C sufferers believe there is a vaccine for the disease.
A Need to Shatter Myths:
* The stigma attached to hepatitis C is far less than those infected think – Although 74 percent of hepatitis C sufferers believe that most people think that the disease mostly afflicts drug addicts and people with unhealthy lifestyles, only 30 percent of the public actually holds this belief. Only 12 percent of the general public believes that people like themselves don’t get diseases like hepatitis C.
Now.. that 30% is alot lower than I would have thought .. yet 30% of a population is still a significant number of people who will think this way. In a room of 100 people, 30 of them will think a person with Hep C contracted it through IV drug use.
We're never going to successfully combat stigma. As a people, unfortunately, we all engage in it. I feel badly for obese people who are judged simply on the way they look and the person they are is ignored.
What we can do is reduce stigma through education. So maybe it doesn't require ALL of us to put a face on HCV. Maybe it simply requires ALL of us to educate where we can and do what we can.
There is some really good information in that quoted article... and I think this comment perhaps addresses your question:
"Since my diagnosis with hepatitis C in 1999, I have been dedicated to sharing my story and encouraging others to do the same so that we can bring the attention to this disease that it deserves," said David Marks, original Beach Boy and the official Be Hep C S.M.A.R.T. campaign spokesperson. "Until people with hepatitis C unite and speak up, this disease will remain a silent epidemic."
That's one thing ... but I also think the medical community could help us out with this. Family physicians are woefully uneducated about HCV. The medical community needs to address this. GI's and Hepatologists need to take some responsibility here. That is my personal opinion.
Wow fret .. you really make a girl think ...leading me to do some reading that is incredibly interesting and lots of pondering going on in this peabrain of mine over this question of yours!!
Trish
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
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
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
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
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