HCV, can we have one united front?

[fretboard]

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      

[Dee1956]

I agree with NYGirl, the ignorance is awful,
I know old post

[Randy0812]

Another risk factor not mentioned is what we went through in the 70's while in basic training and that is through the use of airguns to deliver vaccinations. Imagine, if you will, over 100 people lined up with both sleeves rolled up and moved through these lines getting innoculated like cattle. No sanitary protocols were involved and it was obvious that they were not concerned about transmission of diseases. There are thousands of cases which have been brought to light when no other risk factors were involved. For more information just type in use of airguns in blood borne disease and see the websites. I was probably in some of those photos. The VA just allowed me the recognition that I have sought since 1989 and it is now 2011.

[HCVet]

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?

I had no intentions of posting here ever again, because a tread was altered I participated in. But this post was brought to my attention and glad to see folks still get how stigma shatters lives. Stigma is created because of federal grant $$ and the fight to obtain them. HCV disease is slated to become the stigma queen of STD prevention all due to junk science. What a shame...

I hope your efforts are successful and not fall victim to the now "global" special interest and this board's agenda.  If this post makes it to your attention, please spread the word... that because of real advocates ... there are changes to CDC policy now, recommending anyone over the age of 45 get tested. But doubt you'll see that campaign anytime soon. Pray I'm wrong:( One more comment... the most infected with HCV disease are military vets. The only way to stop the spread is to follow universal precautions.

Good day and thanks for your efforts and insight into what is needed.

Tricia Lupole
Executive Director
HCVets.com Educational Website & Support Forums

[IAmTheWalrus]

Wow! Sorry I missed out on all this post ('till now). It has been really thought provoking. I think also, as has been pointed out, that education is the key. Some people, when provided the information, understand readily and see the unimportance, in retrospect, of how the disease was acquired. Some people are education-resistant. It is just the way it is.

However, when confronted with the possible risks in my life that could have resulted in the infection, Millitary vaccines a long time ago or IV drug use episode an even longer time ago, I find myself preferring to think that it was the Army's fault, not mine (even though IV drug use is the most common factor). So, even though I don't think I would judge someone based on how they acquired HCV, I am obviously susceptible to the stigma factor. Not because I see such a stigma, but because I feel somehow partly responsible, like if I was DUI and got in a wreck causing myself and family injury. I hope my reason and knowledge marginalize this bias to the point of it being a non-factor. I think most people will do the same when they are educated and if they are able to have enough understanding to overcome the fear.

The "money" aspect in limiting HCV testing is infuriating. People's lives ought to have a little more standing in business/capitalism than they do. But the "they" that are subordinating compassion to greed are really "us", collectively, at least.

"The fault is not in our stars, but in ourselves"

LL: Liked your comment about "100 learned from me...."  I wish I could keep that thought in front of me all the time so I would remember the improtance of doing whatever little bit I can to improve the education picture. Educating here is kind of like preaching to the choir. Maybe it is good practice for other encounters. I will try.

It is late and I know I am definitely rambling. Got a lot on the foggy brain tonight and just needed to talk, I guess.

Thanks and good wishes to all on the forum. The rest of the world would be a great place if everyone showed the good sense and compassion that show up here so often.  - G'night

[fretboard]

I was just gonna put up a link I ran into and I noticed you brought up this thread again.  Well that's good cause I didn't have anywhere to put my link, LOL.  Yes, everybody on this forum has always been really cool to me.  Hell even when I came out and laid my whole drug history on the table.  That surprised me, cause the druggies that I ran with didn't have computers, so I just thought there's probably never been a junkie on this forum. :)  funny!!  Yes, I've learned alot on this forum, even from this thread, or especially from this thread.  Oh, anyways the second to the last paragraph above, the people who act like the lady who put that hate on Susan.  You're right, not on this forum!  
take care, oh the link here it is.  later

  http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Aging%20Guide%20Final.pdf

[Lady Lauri]

Imr,...not to worry, think a few of us got that hair raised up on the back of our necks at first, as it was worded. Than I figured he'd meant it as the way it was labeled back than (hoped so!) and as it progressed, it seems just that.

Fret, I'd thought about Naomi, but as mentioned, it's awfully 'quiet' in the public reach, never hear too much on it/her.  

"I don't think people appreciate that this virus is projected to kill four times as many Americans as AIDS," Judd notes. "It is epidemic."...............

Really hope that get's said a lot more to the public, made me read it twice, imagine it would shock those totally unaware.

I do understand what your saying on those with Hep looking down on those that got it thru drug use, but I don't see it in this forum, and whoever IS that way.....well good luck to them in life. They'd fall in the same category as the women that did that to Susan in character. I personally have never encountered someone with that opinion, attitude.

Eureka,  have to agree on your comments on the insurance companies. Too tired right now, so later :) But than this thread could go in a whole other direction, lol. What the h*ll, threads often go all over :)

LL

[fretboard]

Hey I wanted to let this post die and go away, but I made more than one error on this thread so I wanted to clear the air about it.  It seems Naomi Judd is helping others, that's something I didn't know, so here's the link.  I included part of the post, which is from 2003, in case you don't want to go to the link.  thank you

  http://www.usatoday.com/news/health/spotlighthealth/2003-09-05-naomi-judd_x.htm

HCV basics

HCV is typically transmitted through direct blood to blood contact and infects the liver, causing inflammation and damage to the liver tissue. While a diagnostic HCV antibody test was invented in 1989, there is still no vaccine to prevent HCV infection.

"I don't think people appreciate that this virus is projected to kill four times as many Americans as AIDS," Judd notes. "It is epidemic."

"Education is the most important strategy for people," explains Bacon, who is a professor of internal medicine and director of gastroenterology and hepatology at St. Louis University School of Medicine. "If you have any of the risk factors, then get tested. If you have been infected, then get to a specialist who is knowledgeable about evaluation and treatment of patients with hepatitis C. There is a lot of misinformation out there about hepatitis C, and you have to get past it."

Risk factors include:

• Blood transfusion prior to 1992

• IV drug use

• Snorted cocaine or other drugs using a shared straw or bill

• Hemodialysis

• Tattoo or body piercing

• Shared razor or other personal items that could carry HCV

• Exposure to blood in the workplace or military

"There is a less than 3% chance that the virus can be transmitted through sexual intercourse," Bacon explains. "CDC doesn't make any recommendations to couples in a stable relationship to do anything differently than they did before – meaning condom use."

"I worked as an ICU nurse and I received a needle stick," Judd says. "That is how I was infected. I think 80,000 health care workers are exposed to contamination on the job that's why I did a public service announcement to promote retractable needles so this transmission avenue can be eliminated or at least reduced."

[fretboard]

Imr28, thank you very much for your apology, it means alot to me.  God Bless

[lmr28]

apologies for sounding harsh/preachy/judgemental.  That was my honest gut reaction to your initial post and that was what I was responding to. I did read all the following and do realize that you added more- I was simply responding to where you began. However, it was late and I may have gotten caught up in that restlessness of not being able to sleep and feeling a bit pissy, as well.  I am sorry if you were offended by my repsonse.
this has been an interesting thread to read and to re-read.  It is an important conversation to have.  I catch something new with each review.  
Peace!
~l.

[fretboard]

I apologize that my post came off as me sounding mis-informed, obviously you didn't read all my posts or you would know what happened when I posted that initial post.  It seems like everyone else read all the posts that I've made on this thread.  I wish you would, I am sorry if I offended anyone, but I have been more than truthful about all that occured.  later

[lmr28]

" In comparison to the HIV virus which was proven to be a gay "male" disease. "  
Puh-lease.  I won't even continue to address this MISCONCEPTION and UNTRUTH.  Seriously. Anyone living in the US who still believes THAT hype, must reaquaint themselves with the reality of HIV and do some research while checking out the real statistics (past & present)!!!  
~FRET- I know that you have gotten enough grief about this above, but I simply can not NOT respond as well, misconstrued or not, it is simply inaccurate and poorly informed to post the assumption (2008!) that HIV is a gay male disease.  

"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."
Namoi Judd actually has an entire web site dedicated to raising positive awareness concerning HCV.  She has worked hard to combat the steriotype and negative connotations.

someone- HCV is RARELY contracted through sex.  It is NOT an STI, STD.  It is blood to blood.  Generally not contracted through sex.  It is not contained in any other fluid.  (That is certainly not to say it cannot be, just that it is less common!!!)  

Lady Lauri- my applause, as always!  You point out sound points.  I (ironic though it is!) contracted (we think!) HCV through a tatoo in an "unsavoury" location (the location I was in when I GOT the tatoo, not the location where the tatoo IS on my body! tee-hee!).  I am torn as a teacher- I want to educate my students, but teach in a very conservatove school.  I HIDE mt tatoos!  (Oh! brain fog! almost forgot- the true irony! my tatoo is a pegasus!  get it!!!  interferon!!!  PEG!!!!  ok, it is only funny when I am in the state of beyond exhaustion and can't catch my breath!)

Trish~ excellent research and fantastic information!  Thanks!  I believe you have summed up all that I could possibly say on my own.

Lastly- (or not- may get back to this tomorrow when I may make more sense!)  It is all good and well to fight the stigma.  I believe very much in fighting the good fight.  all the way!  However.  Totally depends on your/my/hers/his life circumstances.  If it were that easy, we all just WOULD.  After all, WE suffer b/c of the stigma.  It is THERE, HERE, EVERYWHERE.  all change occurs slowly, at great cost, and over great time.  the numbers grow (unfortunately!), and with it awareness.

This was very interesting....  wish I wasn't so far gone tonight.  I have so much more to add, but can not make my fingers hit the right buttons!  (ugh.  scared to see my latest HGB!!!)
XOXO,
WE are in this together, regardless of where our beliefs lie.
~lorraine

[fretboard]

Diagnosis of HCV would end up being costlier to manage than ignorance of HCV, after all (from an insurance standpoint).

--------------------------------------------------------------------------------------------------------
Very good point, maybe the insurance companies are paying to keep the stigma "alive and kicking".  Why would they want regular people to take an HCV test, it's gonna cost them some big dollars.  So much money that it makes sense to me that they would do something subversive to keep the reality of HepC away from their people.  I don't know, I don't really think they have had to stoop to that yet, cause they don't have to yet.  The American public is totally in denial and ignorance about HepC, I think we all agree on that.  God Bless

[eureka254]

When I try to think about what contributes to HCV's current 'stigma' and 'public opinion', it boggles my mind.  I can't help but feel that as long as we think of a disease in terms of 'risk groups', or in other words, 'minority groups' (IV drug users, transfusion patients, alcoholics, etc.) it will be 'stigmatized.'  It's similar to the history of 'public opinon' regarding HIV, for sake of camparison:  HIV just about had 'orphan' disease status when it was considered a "gay man's" affliction; it got a little more press when it was found to be medically transmitted; but when people REALLY started to champion for funding and research and education was when it was proved to be a heterosexually transmitted disease.

The guidelines which the medical community uses to decide when to test, too, I think, further compounds this problem.  If we're only testing 'risk groups' , then of course the only positive results would be those who were participating in 'risky behavior'.  I am of the firm belief that if we instituted population testing the 'contributory history' stigma would be turned quite on its head.  

Part of that equation, too, is the healthcare/ insurance factor.  As a disease that is largely asymptomatic for a majority of individuals for many years, the cost-analysis end of insurance is sure to discourage testing/treatment coverages.  Why would they want to bother to spend $$ to test for and attempt to cure a disease that doesn't cost them anything for years in the majority of cases? Diagnosis of HCV would end up being costlier to manage than ignorance of HCV, after all (from an insurance standpoint).

(I've also observed that more research, as a rule, occurs in areas where their is higher 'population incidence'.  In general, our US medical community is far less educated about Hep than practictioners in other 'high incidence' countries, and consequently far less aggressive in observational and treatment protocols.  And from a patient standpoint:  "Healthy" people will often contribute to cancer research, or to AIDS research...because, after all, it can strike anybody...  but contribute to "hepatitis" research?... people don't usually contribute in matters they don't think will be something that will affect them or a loved one.)

I often wonder, IF the CDC were to advertise/announce that individuals particularly at risk for HCV infection included anyone who has received: manicure/ pedicure/ immunization/ flu shot/ dental care/ tattoo... and encourage testing of all such individuals...
what would happen to public opinion then?

[fretboard]

In my original post, not the one nobody could understand.  I really wish I would have thought about pasting it onto Word or something, and then posting it later in the day, as it touched on a couple of different areas.  Oh well, it ended up happening that way for a reason I guess, but have you ever met anyone personally in the "big divide"?  Like on separate sides of the fence so to speak, I mean one person who aquired HepC by using IV drugs and another person, who has no idea how they caught HepC, but they make it absolutely clear by saying "I have HepC, but I'm not an IV drug user and I never have been".  IMHO all this does is feed into the "stigma", and fuels the fear.  So, the person who is clearing themselves by saying, "I'm not one of those, I'm one of these", it's all the same.  It reminds me of when I was court ordered to a drug rehab house back in the early 80's. One of the counselors there asked me if I was an alcoholic.  This was prior to me ever accepting the 12steps as an approach to getting clean.  I said no, I am a drug addict and as she went along she was able to easily prove her point as the real deal was yes I was an alcoholic and a drug addict.  At the time, I was so stuck on using opiates and that's all I would identify myself with.  The conversation was a big breakthrough for me b/c up until that point I had never found a reason to ever look at drug addicts and alcoholics together.  In fact, even though I had already been busted for drunk driving and another dui that was dropped to a reckless, and had blackouts on a regular basis, I didn't think I was an alcoholic.  To take it a step further, I looked at crankster's and heroin addict's differently b/c my ideals told me that heroin addicts had a physical addiction and crankster's could stop using at a the drop of a hat with no problem.  Wow!  Was I wrong!  Well I've learned alot about that, since then.  My point is in the "big divide", there are people, not on this forum who look at HCV two different ways, the people who got it without using drugs and those drug users (like me), who ruin it for people like them.  Correct me if I'm wrong b/c I don't work with Heppers in any capacity, I just happen to be one.  I included part of your post to ask my question, are there people who look down on drug addict Heppers, when they themselves have HepC?  I know it's not prevalent on this forum, ever and I don't think it exists on here.  Also, have you or anyone else in the medical field ever run across this situation?   God Bless

"While stigma is often caused by fear, lack of knowledge, there is the other side that is from looking down on people-the ‘you’re a low life no good as you have done drugs’. That’s the hardest to deal with/battle".

[Lady Lauri]

It really circles back to many of our original thoughts that educating others, public is the answer.............

forgot the................ 'thru us, others- versus our rock star, bimbette stars'......unless a 'respected' public figure shows up.

I can't remember the other names either, thery were rockers I believe, David Crosby, Steven Tyler (? Nygirl? That right?)

LL

[Lady Lauri]

.....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......

Another disadvantage in awareness.....as Hep A & B are transmitted thru sex, anal, saliva, etc. so it's very difficult to say "NO, Hep C is different", people get confused. My sister took a mth. to get it straight! Wish it would have been totally different names for each!

"one hepatitis, two hepatitis, three hepatitis , four" !! Confusing to the public.

LL

[Lady Lauri]

Wow, 30 % is way less than I'd have thought also.
It really circles back to many of our original thoughts that educating others, public is the answer, which was the reasoning in my reply of '100 have learned thru me, than 100 thru you, 100 thru another' and so on. I'd posted last year (where??) that some stigma is understood in that sense that they think they'll get it drinking after us, etc. therefore afraid of us. The woman at  Susans church, however, handled her 'fear' terribly. There is a respectful, tactful way to 'move' if one is afraid, etc. She was plain hurtful.
  I'd had a conversation with someone on dating a person with Hep 1, being SVR from Hep 2 a few weeks ago. (or a geno 1 dating a geno 2, etc.) ...as in 'would you date a person with Hep, being SVR'd from Hep"? My thoughts were this, yes, knowing what I know now, but 2 years ago, I honestly don't know as I knew little about Hep! I wouldn't have run from a person, treated them badly, but get into a relationship, intimacy I'd have really had to research Hep first. But THATS what I'd have done, research it. (most won’t ?) I also pointed out that when a single person meets another, they really have no clue what they may have-even with the ol' HIV test before sex standards, few get checked for Hep, therefore a person telling you they have it…..well you'd already know, not find out 3 years later, etc. I realize this is a whole other can of worms here, but it all falls into that stigma, fear category. While stigma is often caused by fear, lack of knowledge, there is the other side that is from looking down on people-the ‘you’re a low life no good as you have done drugs’. That’s the hardest to deal with/battle.
  Note:  Also, I have made many kids (15-30 is ‘kids’ to me, lol) now aware that you can get this thru tattoos, snorting drug use also and most had no clue, they thought as most do, only thru the needle. Also the nail salons  I often pass that info. Along. If we really add up how many we are each educating, I believe that’s making a bigger impact than we might think. When I went back to work last week…hundreds of people there, many know and I had not one person that didn’t hug me, many ol’ guys kiss me (ewww) and was SO happy to see the response by back from sick leave got, as I was worried on the stigma. These ages range from 17 to 90 and I’d expected some ‘touch me barely hugs) but not one!
  Nuff babbling, your right on this did make for a lot of thought Trish.

Fret…tho it came across that way  in your 1st post, understood you meant the stigma, not your personal opinion , in your follow up post. All good.

LL

[fretboard]

Thanks for all the responses, I have learned loads from everyone who has posted on this thread, as I always do when I'm on this forum.  Yes, education is really the only means we have available.  I think the saying goes something like this, "each one, teach one, because we have created nothing by ourselves", I don't know who that quote belongs to, so I'll have to give them credit when I find out.  I work with the health care industry as I have a civil service position and we regulate some industry standards.  Because of that I am sometimes sitting around doctors who talk about all kinds of health care related ideals.  So I for one, will keep my ears open, without divulging too much about me having HepC, not so much about me having it or not, but about how I got it.  Even though I have to keep it hush hush, or chance the possibility of getting the boot or outcasted socially.  I will teach myself how to approach the subject or conversations thereof with finesse.  As always, God Bless  

[Trish77]

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

[Trish77]

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

[fretboard]

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        

[Lady Lauri]

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

[Lady Lauri]

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

[Annie441]

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