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Hep C Discussion Forum -> On Treatment -> New CDC Interest in Hep-C Testing Affecting Me
Post Info TOPIC: New CDC Interest in Hep-C Testing Affecting Me
alohaKim


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RE: New CDC Interest in Hep-C Testing Affecting Me
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Great job, Alan!!! You're so brave to go public like that. From someone not as brave as you, THANK YOU for standing up and spreading awareness.


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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
Iris Dragonfly


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Dude! you're a celebrity! That was incredibly brave of you, awareness is so important...glad for folks like you who aren't afraid to talk about the uncomfortable stuff. Right on! We are all very proud indeedsmile BB, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
ty


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     Great interviews Alan!  It's this type of PR that needs to get out to lower the stigma that many people feel about Hep C.  I have met many people that treated years ago who never told anybody because they were embarrassed to have had it.

     I have identified about forty ways that I could have been infected and most of those ways have nothing to do with my wild and crazy past. lol.  Keep up the great work and here's to everyone beating this dragon, tysmile



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Genotype 2 - 24 week Tx - Start 10-8-2010 - 4 week PCR test UND, 12 week PCR test UND, 24 week PCR UND,  SVR Oct. 11 
Cinnamon Girl


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That`s really brilliant Alan, very well done!!  clap.gif You sounded so confident and knowledgeable, how wonderful that we`ve now got our very own TV spokesperson! 

You really are a star!  sun.gif  And I love your new avatar pic too, nice one! 

~ Jill xx



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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.

 

 
JoAnneh


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Way to go Alan!!! Hope you enjoy
Every minute of fame and attention!
You have been so caring and supportive to many
On this formun. May we all get exposure in
Our area for this disease. Thank you for being open
W the public. My husband of 23 years does not have Hep C;)
I am so happy for you and your wife!
I acquired mine thru teenage drug abuse,
I am a walking talking miracle of Gods saving grace!
I was reborned and save 25 years sober in AA!
Hep C was not discovered till 1989. It has been around a long time!
Proud of you being our spoke person:)
Enjoy the attention and I will share your article w loved ones.
Thanks again, JoAnne
And bless ur heart for working!!!

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Judy S


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LOL Dave!!  That was funny and I like Alan's new pic, too.

Alan, you must have been seeing stars after all those pictures, lol!  Some of my friends have already viewed your video and they say it's great to get it out there, as so many people don't even know they're infected.

Great news about your wife, Alan!  I had my 10-year-old Brianna tested a few months ago as well.  (I had a cesarean with her.)  I was SOOOOO happy and relieved when she tested Negative; no antibodies found.  YEAH!!!!   biggrin



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
LanaiSurferGirl


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i just watched the video and read the article!  I am forwarding this to my family to see :)



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
Scout


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Nice work Alan.



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Geno 1a, Viral load at 2 4, 8, 12 and 16  weeks, UND, Triple therapy Incevek done,   Peg & Riba Done, UND and making plans for the future!!
news


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Thanks, guys. Now if I can just figure a way to get an autographed copy to Tim the horse trader (hrsetrdr). The new pic is one I found from the Easter weekend campout I told y'all about. Today I did a photo shoot with the Baltimore Sun paper to go with an interview we did last week. They also interviewed my doctor. The reporter has said she intends to submit on Thursday before leaving for vacation. So it might run on Friday, or just a few days after. I'll be watching and keep you posted. The photographer must have taken a hundred shots. What a crazy thing all this is. but if it gets the idea of timely testing and treatment into a few people, my work is done. Folks don't have to wait as long as I did to discover they are infected.

Alan

PS. Don't know if I mentioned it, but my wife of 39 years has just gotten the results of a recent test (after I was declared UND at 24 weeks) and she has no signs of ever being exposed. So this family may get a clean seal of approval at SRV time (around the first of next year).



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Phil G


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Well done! A real live victim moving, talking, and not stumbling off in the fog. Outstanding! Even a new star status avator.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
davesf


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Great job Alan. Getting people aware of their infection before it escalates to liver damage is definitely the goal. In fact, I'm already seeing some definitive results from you being the spokesmodel for HCV. Specifically that your agent has updated your profile headshot from your portfolio

All the Best, Dave

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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Judy S


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I'm so proud of you for doing that, Alan!  You sounded very professional and knowledgeable.  I've been slowly bringing about more Hep C awareness amongst my closest 30 friends and family; I shared your interview with them.  Thank you!



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
Shep


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Yes Alan! You did a great job!
Thanks!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Kellyw


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Well done.

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
news


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And now for the TV spot.

https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-7402077_1

It went so fast!!. We needed about 5 more minutes.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
news


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Well, here is a link to the first of two newspaper articles. They made several mistakes, but none we need to get concerned with. I only wish I had been more clear in my final remark. I meant to say anyone that thinks they are at risk should test. That won't mean they have to treat right away. They can think it over for a while first. But at least they'll know.

Anyway, here goes. I hope the later ones are better....

http://baltimoretimes-online.com/index.php?option=com_content&view=article&id=1506:study-says-five-million-have-hepatitis-c-and-dont-know&catid=113:health-photos&Itemid=475

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
LanaiSurferGirl


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exciting news!  Let us know how it goes and great to see you advocating :)



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
news


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My doctor and I just did a taped interview at Fox 45 in Baltimore. It was SO FAST. We didn't get much time to make our point, but we tried. And they wouldn't allow my hero, the CRNP, to join us. It was only set up for two guests. It is supposed to air on Monday or Tuesday morning during the news, at around 7:24AM. I will do my best to get a digital copy of it somehow. No word on the two newspaper stories yet, but the photographer for one of them is scheduled to stop by here on Tuesday.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
hrsetrdr


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Shep wrote:

That is super cool Alan! You should get us link to the interview--then we could say we know somebody famous! But really would love to see the interview. People really should get tested

 +1.   Also, free autographs for forum members. 



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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

 

 
news


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Sure am glad to hear you guys all approve. It now looks like the doctor's schedule is so tight we will be doing this thing live at 7AM Tuesday morning on one of our local TV stations. I'll keep you posted. And I'm sure I'll be able to get a link after the interview is over. The station will own the rights, but they are in the business of making things available, as long as there is room on the website for some advertisements.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
LUV2RYDE


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I would love to see it as well. Persoanlly I don't think there is enough awareness out there and not enough support. I am kinda in the closet about my situation only a few family members know. I wish I could be more like you....because I would love to get the word out and bring up some money raising events!smile



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
krowdog


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Count me in!

I too would love a link.  Or if you get a copy, a youtube post would work.

Keep up the good work,

Brad



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
Judy S


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I applaud you for helping to bring more awareness to our virus, Alan.  Totally understand about the election year, lol.  I would Love to see the interview!



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
Phil G


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It took a butt-kicking disease to make a star. I'm glad I was here for it, well, kinda, almost. Very cool Alan, and glad to have known you under any circumstances.

I think most that hear about it and want to know will get tested. Others, like the former me, will want to live in denial and won't be tested just to keep doing the things that got me here.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Shep


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That is super cool Alan! You should get us link to the interview--then we could say we know somebody famous! But really would love to see the interview. People really should get tested



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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Kellyw


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Yes. It would be great to see it. I heard the CDC was advocating baby boomers get tested.

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Kelly 2b dx 8/11. Tx begun 12/30/11. Apparently had it for decades.
davesf


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Welcome to your 15 minutes of fame Alan. Great to hear you're getting a chance to advocate awareness in a wider medium. Let us know when you're televised; I'd love to check it out.

Best, Dave

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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
news


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I have been interviewed by two newspapers in the past week about Hep C testing and treatment. There is a tentative schedule for Friday afternoon for an in-studio interview on camera for a TV station. My doctor will be there with me for that one. All this attention feels very strange, but the interviews are very positive and seem to be spun toward getting people to go get tested. I think I am comfortable with this standpoint. I just hope I am not associating with goof balls. In an election year my confidence in the media always falls way off. Alan

__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
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