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Hep C Discussion Forum -> New Members Area -> Why is it important where I received my HepC?
Post Info TOPIC: Why is it important where I received my HepC?
Enavigo3891


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RE: Why is it important where I received my HepC?
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longld wrote:

Interesting - did not know about mandatory reporting; 'The results showed 46 states require all medical clinics, hospitals and laboratories to report acute cases of hepatitis C to local health officials.'

Some actually call the patients up looking for trends that may need to be investigated - seems they are most interested in people under 25 yrs old.

  Yes - these reporting procedures contribute to the statistics released on who, how, how long, etc. And yes, how you got it is of interest to them, as well as the doctors. For example, consider the chances of a woman passing the virus to her child at birth, it's 5 out of 100 = 5% which is pretty minimal however you have situations like my sister and I - my mother had a 5% chance of passing this on and both my sister and I were born with it. That's apparently very interesting to the CDC and doctors. My doc said in his career he's treated less than a handful of people who are believed to have contracted it at birth; they find the whole thing intriguing like I'm a spectacle in a way. 30 years + VL's typically remain under 500k and liver function tests are always normal. I've never had a biopsy as doc feels not necessary since labs are always good and I'm treatment naive. This early in the game with new treatments, docs are still checking off boxes of "first patient treating who is this..."



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
longld


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Interesting - did not know about mandatory reporting; 'The results showed 46 states require all medical clinics, hospitals and laboratories to report acute cases of hepatitis C to local health officials.'

Some actually call the patients up looking for trends that may need to be investigated - seems they are most interested in people under 25 yrs old.



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62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
Enavigo3891


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If you're in a mandatory reporting state it's just a question they ask so they can fill out their CDC paperwork.

But, I have more fingers and toes than I have people  (not including doctors) in my life who know I have HepC. And on those rare occasions it has come up I am guilty of feeling obligated to specify that I was born with it. And I know why ... because of my age, I was in high school when HepC became something that was brought up in health class. We were taught that you get it from being an alcoholic, a drug addict, a prostitute or getting a bad tattoo - for real. Therefore anyone who sat through that same curriculum with me would automatically question (I assume) which one of those I was and you know, in high school - success is making it through the day without being the butt of someones jokes. Now that I'm older, I still assume people will judge me or make assumptions.



__________________

Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
Karen


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Hi Lee-

The reason given to me by the medical community was to help establish how many years I had HCV...which, along with testing would help them to determine the condition of my liver.  



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
dustbear


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Hi Lee:

I was asked the same question, and then asked them why they needed to know.Here in Canada, the blood supply was contaminated back in the 80's.  So, if you received a blood transfusion during that time frame, you would be entitled to money if you can prove it. That made sense to me.  I knew how I got it, but I did not feel obligated to say how on the form I filled out.

I certainly don't go around telling people. If it comes up, I can say I don't know, and/or there is no test to find out.  I can get away with it because most people don't know. If they do know, most think it's cuz you're a druggie. Some people may feel the need to clear that up. 

My employer thinks I have a chronic liver condition. Remember, hepatitis is just inflammation of the liver and can be due to many reasons.

If I look for a new job, how do I explain the year I had off work?  Not sure about that response, yet...

 



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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
longld


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Marktrux,

I guess the Doctor knowing if you are still participating (?) in high risk behaviors may affect how they approach the treatment - makes sense.....



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62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
marktrux


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A Dr may want to know how we may have contracted this, for purely medical reasons. I'm pretty sure most cancer victims have been asked about high risk behaviors that may have contributed to their conditions. I'm not very thin skinned when it comes to the Drs, they generally have our best interests at heart, but I don't explain to non-medical types how I contracted Hep C.

 

P.S. No one ever "fairly" contracted Hep C-it's always UNFAIR!!!



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hrsetrdr


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Hi longld,

You don't have to explain to medical personnel or anybody else how you got the disease.   If you actually know how you got it, and want to tell people, then of course that's fine.       Some things just can't be known, and for a sizable number of HCV patients, that is the case with the origin of their infection.



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
mdmfoo


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I have HepC, most likely from marriage to an ex drug user (occasionally IV) I must explain!!! He wasn't a drug user when I met him, but recovering from Hepatitis ;-( We didn't know much back in the 60's.  I used his razors after he'd used them. Probably how I contracted, as I never used IV drugs. Not that it really matters, but it kinda does.

My husband was just dx'd with lung cancer. He never smoked, but we have to explain that one also ;-(

life isn't fair!



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JenT

Age 60, female, Gen 2b, failed Interferon/Riba miserably, with major neurological deficits. Starting Sofosbuvir/Riba as soon as approved ;-)
longld


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Maybe a crazy observation but I notice that most Hep C patients feel that they must tell how they got (or believe they got) Hep C when getting on the forum or speaking in public - why is this important?   My Doctor asked me how I got mine and I explained my belief but then asked her why she cared? - she quickly explained that the knowledge would not help her in creating a treatment plan for me at all.   When discussing my disease with others I find myself needing to explain how I (unfairly!) got the disease but lately am fighting this urge and not explaining - the rebel in me......

Some of it may come from Cirrosis of the liver which many people assumes comes from being a heavy drinker and I always want to explain that I am not an alcoholic!   Maybe we are trying to tell everyone that we don't deserve this disease?    As I always said to my boys; 'Life is not fair'.

Am I wrong?



__________________

62 Yrs Old, CHC Geno 3, Cirrhosis, Kidney Transplant (13 yrs), On Sovaldi/Riba Treatment (24 week) since Feb 01,2014

Viral Load 7M on 1/8/2014,  UND at EOT 7/18/2014
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