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Hep C Discussion Forum -> General Discussion -> Don't forget non-USA members!
Post Info TOPIC: Don't forget non-USA members!
Angel67


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RE: Don't forget non-USA members!
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I think people are gripped with terror....maybe disproportionately ( I know I was )? Well sometimes. Obviously if I were at end stage I'd be begging for Harvoni and I suppose people are seeing it as the holy grail of treatments....but it ain't the be all and the end all. There is plenty more stuff coming down the pike and even the old treatment cures half of the patients. As I understand Australia have totally rejected Sovaldi as being too expensive...with that in mind Harvoni doesn't stand a chance of getting through. While NICE(UK) have okayed Sovaldi (provisionally) it it still may not get through and it is only for selected groups ( Me being type 3 would have to get Cirrhosis before I would get Sovaldi or fail conventional treatment). It does seem rather strange that very poor countries will get the new super drugs and richer westernised nations won't.....perhaps we shall see reverse health tourism soon?



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Josh Haynie


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   you know I often remember when i first came here or found this place in July .. and how you guys all welcomed me :) 

 

  no matter what is said or what happens I know thats who you guys truly are......

 

    people that care for others and that are trying to help :)  haha i know its frustrating sumtimes :)

  its all good though ....



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genotype 1  HCV 4,958,318 iu/ml    HCV Log updated soon  iu/ml------5'10 135lbs 9-15-83  genotype 1 since 2002----Pendleton,Oregon
Cinnamon Girl


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Thanks for bringing this up, Malcolm and it is a good point.  On the other hand, this is an open public forum and with the current issues a lot of our members are having surrounding Harvoni then of course that will dominate the discussions, that is very understandable.

Let`s also remember that this is not a medical forum, so no-one should be made to feel bad because they can`t read an HCV Antibody test or any other test result, in fact no-one here should be made to feel bad about anything.  All our members have their own particular worries and concerns that they are dealing with and that`s why they come to us for support.

Thanks to Matt for making a very worthwhile point.."remembering to reach out can make the difference"..yes indeed, and something to bear in mind. 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Matt Chris


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Thanks for making us aware Malcolm , sometimes we get so consumed with our own trip towards HCV that we forget to reach out and help the others that are on the journey also.

Malcolm is correct we don't have to be an expert on HCV, all we have to do is show we care. Greetings and positive encouraging thoughts can build up a person that going through the hell of  Interferon & Ribavirin they really benefit from someones who understands about the isolation that occurs with having HCV.

Remembering to reach out can make the differance.

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Beacon


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Malcolm,

Please don't go. That would be a huge loss for this forum. You are absolutely right though. We Americans have gotten so caught up in Harvoni fever that we forgot about the outside world. No one or few here are on triple therapy anymore and for almost a year now it's been all about Sovaldi and Olysio and mix in some ribavirin and shorter treatments of peg. So needs have changed here and posts from those on treatment are not as "needy" due to fewer side effects. Hopefully those here who have been through the older treatments are still sticking around to help those still on triple therapy. And the rest of us need to stay tuned in to the needs of others. We don't want to build a wall between those who went through the older treatments and those on the newer treatments because we can't relate to each other. Let's try harder to relate. It shouldn't be a "me, me , me" and how do I get my Harvoni and screw everyone else. I need to keep monitoring the other threads such as the New members because we are still all in this together. 



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GT 1a, was tx naïve, cirrhotic(Fibrosure), 64 y.o. Started Harvoni 12/12/14 for 12 wks. EOT weeks 4, 13, and 24 HCV not detected! HVC not detected EOT plus one year.

A smooth sea doesn't make for a skillful sailor.

 
Trainhopper


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The only comment I dare say is... I needed help with my labs.... And I have no Tx.  But I understand  the point 



-- Edited by Trainhopper on Friday 31st of October 2014 12:09:05 AM

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34yr male Dx 1998 G.T.2b V.L. 2.5 million no current Tx 
Josh Haynie


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 your right Malcolm :)

 

i dont think enough patience is being exercised ... lol you can read a antibody test because well you are super smart :) Legit person who knows what hes talking about....

 

   I care just as much for sum1 in Nairobi,Kenya as i do in California we all need help :) and support... or bounce knoledge or ideas off each other....



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genotype 1  HCV 4,958,318 iu/ml    HCV Log updated soon  iu/ml------5'10 135lbs 9-15-83  genotype 1 since 2002----Pendleton,Oregon
LC


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I certainly don't know how to read a HCV antibody result. You make a good point that we need to be welcoming to all. I understand what you mean lilbit, almost every thread is about Harvoni.

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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Isiscat2011


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I agree.  It is as if someone yelled "Fire" in a crowded theatre and now people are climbing over each other to try to get out.  It is crazy and if it continues this way this forum will not survive. 

But how do you contain a forum that is open to the public?  People are frustrated and upset.  It is like trying to tame a tiger.  

Perhaps if there was some way to segregate the Harvoni/trying to get access to tx type posts.  I would expect some of the steam to die down over time also.  



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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.
lilbit


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Great post. I understand everyone being frantic about getting harvoni but it isn't going to happen for everyone right this minute. I am afraid I have no experience with any of the treatments going on. Only the one I am on now. And sometimes I feel like everyone is against Abbvie so don't post a whole lot. I try to welcome new comers and that is really about all the knowledge I have.

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64 yo Diagnosed in 1991 with Hep C, Genotype 1a, VL close to 16,000,000, Tx Abbvie Topaz II 9/5/14, Wk 2 and 4 und. End of treatment 11/27/14 undetected.  EOT+4 und  EOT+12 und.  EOT+24 und CURED, EOT +52 now I feel really cured.
Dzdayscomin


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Good point, and well taken here, Malcom. ..thanks for grounding me a bit.

Unless i really feel I know, i tend not to comment to much on others test results, the last thing i wanna do is frighten anyone more than they already are when the discover they are afflicted.

Thank you!



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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.
mallani


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Hi all,

I'm a bit ashamed of the Forum lately. Most posts are about personal problems accessing Harvoni. I can understand this is difficult in these early days after approval, but don't forget this is an International Forum. There are non-US members out there, struggling through treatment, and needing support.

Recent posts from Mziffy and Paul B (struggling through 48 weeks of Victrelis triple) resulted in one reply-from me! It doesn't matter that many members have no personal experience of Victrelis.

Bashar (from Bangladesh) asked a question about HCV antibody testing. I can't believe I'm the only one who can read a HCV Antibody result.

I have noticed that non-US Members soon leave, and join other Forums.

The Harvoni problem is temporary, and not surprising. The rest of the world doesn't have Harvoni or Sovaldi, and we don't understand your individual Insurance issues. We struggle to get Olysio or Victrelis!

So, until this becomes a US-based Forum, please consider non-US members. Otherwise, I'm off.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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