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      

[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