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Author Topic: Still true that most with HCV don't know?  (Read 4553 times)

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Offline KimInTheForest

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  • Posts: 1,939
  • Believe in yourself
Still true that most with HCV don't know?
« on: May 24, 2015, 12:15:43 pm »
Is it still true that most people with Hepatitis C don't know they are infected? This CDC Fact Sheet says that right in the first paragraph:
http://www.cdc.gov/knowmorehepatitis/Media/PDFs/FactSheet-Boomers.pdf

I find that astounding to believe. I know that was the case 20 years ago when I was diagnosed. My doctor told me then that for everyone who is diagnosed with HCV, there are 2 more people infected who have not been diagnosed. But really, after 20 years we are still in that boat? It would appear that the message about everyone needing to go get tested is not getting across...

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Still true that most with HCV don't know?
« Reply #1 on: May 31, 2015, 06:46:59 am »
I would say it is.  I know of a lot of people that dont know it even exists.

They are just starting to mandate (where I live anyway) that doctors test everyone for it.  It hasnt been that long ago that they started to mandate that doctors even test everyone for HIV, although they have known about HIV's existance since at least 1985.

Maybe a lot of that has to do with the availability of good effective treatments?  I dont know.

Also there is the money issue.  With the cost of the new treatments being what it is, I doubt most countries could afford to supplement everyone that tested positive if they all were tested and sought treatment at once.

In my case, it's not exactly a reassuring thing to know you have this virus, but there wasnt a treatment I wanted to take - until recently.
« Last Edit: May 31, 2015, 07:44:56 am by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Still true that most with HCV don't know?
« Reply #2 on: June 01, 2015, 12:39:39 am »
I am also going with denial

I am not one of those people I couldn't possibly have that!

Or yeah I did some stuff back in the day but I would know if I had hep c.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MaryC

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  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Still true that most with HCV don't know?
« Reply #3 on: September 27, 2015, 03:34:27 pm »
Is it still true that most people with Hepatitis C don't know they are infected? This CDC Fact Sheet says that right in the first paragraph:
http://www.cdc.gov/knowmorehepatitis/Media/PDFs/FactSheet-Boomers.pdf

I find that astounding to believe. I know that was the case 20 years ago when I was diagnosed. My doctor told me then that for everyone who is diagnosed with HCV, there are 2 more people infected who have not been diagnosed. But really, after 20 years we are still in that boat? It would appear that the message about everyone needing to go get tested is not getting across...

kim
I know this is an old post, but just stumbled across it today and felt a need to respond.  I was one of those people!  I am a RN too!  You would think I would have figured it out!!  I worked in a urban mental health clinic for over 25 years.  I treated many patients who were diagnosed with both HCV and HIV.  It never once occurred to me that I might also have HCV.  Nor to my PCP, who I have been seeing for over 25 years.  In looking back...I had several medical issues which may have been related to my HCV (ie:  I became severely anemic in 2006 and no cause was found after an upper/lower GI, endoscopy and colonscopy.  It was assumed the cause was use of NSAIDs for my chronic muscle and joint aches). 

I was never considered in the 'high risk' group except for the fact I am a baby boomer.  Despite giving many, many injections over the years, I never had an accidental needle stick.  My labs were generally good: normal blood sugars, low risk lipid ratio.  I seemed like the picture of health except for nagging complaints of fatigue and joint/muscle aches with an occasional unusual medical issue (the anemia in 2006; hyperthyroidism treated in 1999).  And the fatigue...well I generally attributed it to over training (I ran quite a bit training for marathons, half marathons, etc over the years). 

No was more shocked than me with this diagnosis.  Maybe I was in denial, but that denial ran very, very deep. 

I am happy to be finally diagnosed AND treated. 

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline KimInTheForest

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  • Believe in yourself
Re: Still true that most with HCV don't know?
« Reply #4 on: September 27, 2015, 03:41:42 pm »
Thanks for the reply, Mary. I guess the news really does catch most of us by surprise. I was certainly surprised when I was diagnosed 20 years ago. But, like you, it did explain a number of problems I had begun having prior to diagnosis.

Clearly we all need to keep hammering away at the "get tested, get treated, get cured" message so that the undiagnosed will at least be diagnosed.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

 


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