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Hep C Discussion Forum -> Post Treatment -> Can I officially say "I don't have Hep C" now?
Post Info TOPIC: Can I officially say "I don't have Hep C" now?
Loopy Lisa


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Can I officially say "I don't have Hep C" now?
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I do not hold my HVC status private. If anyone has a problem, it is their problem. All medical teams know my status to my neighbours. I do care though for the safety of others, especially as I'm still infectious.

There is becoming more and more evidence that people maintain SVR even after 10 years so they are considering it a cure. It is speculation whether it remains in small quantities with in our systems as there is no test sensitive to know. But once you have achieved SVR past 6 months you are considered no longer infectious - according to my doctor.

Either way, I don't think anyone should be ashamed, its not like anyone deserves this disease.

Just my opinion. :)



-- Edited by Loopy Lisa on Wednesday 1st of October 2014 10:19:50 PM

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Genotype: 3b

VL.ïż½over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

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Dzdayscomin


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JB I'll add that in businesses of size they have safety committee's and 1st responders so that in the event of an emergency it would be nice for them to know, but they should all be trained like medical staff to protect themselves 1st at all times.

But even with that, most of these people are just common folks, and when an event happens they get an adrenaline rush and may not be able to slow down enough to protect themselves....I've seen that actually happen. And this is where it helps to have others know.....IDK about you guys but I wouldn't  want anyone to get infected over my worry of privacy. 

Just my 2 cents on that.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
jimbob


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Hi Pizza.
I feel I should clarify my earlier statement. Everyone I see already knows because I've told them. IMO, anyone involved with my healthcare needs to know. What I was agreeing with you about was privacy issues, and how that info might be distributed to those within the office or hospital who are not on a need to know basis. Office gossip, it happens....


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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
pizzacake


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I will always disclose my Hep C status to a healthcare worker and a partner. 

 



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Age: 62, Lived with Hep C since 1971 (Sharing infected needles)

Home: USA, Pacific NW

Genotype: 1A

Fibrosure stage:  F3-F4

Begin 3-month treatment June 24: Sofosbuvir, Ribavirin, and Interferon

Born in the Year of the Dragon. 

 
wmlj1960


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Huey wrote:

Right now it depends on who is asking, My employer/soon to be former/ ... YES i have HCV, it can be considered a disability under the ADA.  if your my girlfriend, i would say "almost no" because I am bios and won't to spin it to the cure side.

 If your talking girlfriend as in intimate sexual relationship type girlfriend then I think full disclosure of status with no spin, including history, is more important than even disclosure to your healthcare providers. Healthcare providers are required to take protective measures with all procedures they do where body fluid-to-fluid infection can occur, such as drawing blood with safety glasses. Girlfriends don't have this requirement.

 The way I understand it, SVR does not necessarily mean your body is completely virus free. It just means your immune system can sustain adequate protection against HCV viral replication without any help from medicine, therefore staying permanently UND. I may be wrong about this permanent UND thing, but I feel strongly about disclosure since lack of it caused me to be infected with HIV 20 years ago. And there's no SVR for HIV. Until I find proof that a person who is SVR cannot infect another person, I choose to disclose in this situation. JMO



-- Edited by wmlj1960 on Saturday 27th of September 2014 11:00:53 AM



-- Edited by wmlj1960 on Saturday 27th of September 2014 11:12:30 AM

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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Huey


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Right now it depends on who is asking, My employer/soon to be former/ ... YES i have HCV, it can be considered a disability under the ADA.  if your my girlfriend, i would say "almost no" because I am bios and won't to spin it to the cure side.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 
pizzacake


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Thanks for the feedback everybody! Makes sense.



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Age: 62, Lived with Hep C since 1971 (Sharing infected needles)

Home: USA, Pacific NW

Genotype: 1A

Fibrosure stage:  F3-F4

Begin 3-month treatment June 24: Sofosbuvir, Ribavirin, and Interferon

Born in the Year of the Dragon. 

 
Isiscat2011


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Trainhopper wrote:

can I ask a question? Im not going to ask if its not in the right forum... People get mad at that right? Well its about bio fibrin

Hi Trainhopper:

You can ask.  We will just yell at you if you get it wrong.  lol

Ask away.  Tig or somebody can move it if it needs its own thread.  We can also instruct you on how to start a new thread if you like.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Trainhopper


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can I ask a question? Im not going to ask if its not in the right forum... People get mad at that right? Well its about bio fibrin



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Isiscat2011


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Hi Pizzacake:

You can say whatever you want but I always give medical providers accurate information for my own protection.  Like you I have HCV induced liver damage and that is also important for health care providers to know.  With an infectious disease there are others to consider as well although dentists should be taking proper precautions.  

Not to mention being UND and being SVR are two separate things so it isn't accurate to say you don't have HCV until you are SVR.  Likewise it isn't accurate to omit HCV as part of one's medical history even after SVR.  So, if accuracy is important to you then you will need to disclose.

It is one thing not to wish to broadcast personal health issues in public but not disclosing it to those who need to know, such as medical providers, doesn't make much sense to me.  Just my take on the situation.

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Milliganus


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I havent reached SVR yet, but if was me, I would probably wait until at least a year to be sure I had not relapsed before not saying anything.  



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Marcy

Long-term HCV, GT1a, IL28B C/T, T/G;  VL 2 mil.  Merck C-Edge Clinical trial  EOT 10/01/14. +24= UND
jimbob


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Pizza, I agree you 100%, however, everyone I see already knows about it. Congrats on UND.

Good response gigi.



-- Edited by jimbob on Thursday 25th of September 2014 02:11:38 AM

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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
beingsassy


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I will still let anyone given me a shot or anything else where blood can be transferred that I had Hep C. Even once i as SVR I will let people know. I value my privacy but I feel responsible to protect others. It's a personal decision that each of us are faced with. Do what is right for you.

gigi



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14
pizzacake


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I went to the dentist today and they have me fill out that disclosure form. You know the one where you're to list each and every disease you've had since birth. I don't know why this annoys me so much; maybe it has something to do with privacy concerns. I mean the dentist doesn't have to disclose to me the diseases he/she has had, right? I digress...

Anyway, can I say officially now that I don't have Hep C? What do you all do?

 



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Age: 62, Lived with Hep C since 1971 (Sharing infected needles)

Home: USA, Pacific NW

Genotype: 1A

Fibrosure stage:  F3-F4

Begin 3-month treatment June 24: Sofosbuvir, Ribavirin, and Interferon

Born in the Year of the Dragon. 

 
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