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Tig


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A last message from Alan Franciscus from HCV Advocate. Seems the time has come to shutter their wonderful blog and website. They are offering access to their guides if interested. We have referred to them on many occasions throughout the years. I thank all of the staff for their tireless work. -  Tig

 

Dear Hepatitis C Support Project (HCSP) / HCV Advocate Readers:

As of August 13th, 2019, our organization (HCSP) has been shut down.  Additionally, the HCV Advocate website and our blog will be taken off-line.

Note:  The fact sheets, and some guides on our website contain important information to help people living with hepatitis C, hepatitis B and HIV coinfections to educate themselves and others.  I will make these available to those interested.  If you would like a list (MS Excel format) of the fact sheets/guides please email me at alanfranciscus48@gmail.com

When I began HCSP more than 20 years ago, there was almost no information for patients about hepatitis C (HCV) to help guide them to obtain medical care and treatment.  Back in the day, treatment consisted of a drug called interferon.  It was an injectable medication that cured only a minority of patients, and it had severe side effects.  Now we have medications in a pill form that can cure more than 90% of people who take these life-saving drugs.  Another benefit of the newer drugs is that they produce few side effects compared to the older HCV medications, and the drugs are typically taken for 8 to 12 weeks.

But the fight is not over!  There are still millions of people infected with HCV who have not been tested, treated, and cured.

We now have a whole new generation of HCV advocates and activists to work with current HCV advocates and activists.  The fight goes on!

I have treasured my work in HCV and the many friends, patients, and advocates I’ve met over the years.  Many of these include the people at HCSP, our collaborators and contributors that I have with worked over the last 20 years.

One of the organizations we have collaborated is with HEP.  Please look to HEP for the latest information about HCV, HBV and HIV coinfections.  Click here to visit HEP Magazine.

Thank you for the support and encouragement you have provided to me and HCSP over the past 20 years.

To Your Health,

   Alan Franciscus
   Executive Director, Hepatitis C Support Project
   Editor-in-Chief, HCV Advocate

For Rosanne Christensen, Lucinda Porter, RN, Leslie Hoex, Kate Christensen, Judith Barlow, and Clara Maltras

Copyright © 2019 Hepatitis C Support Project, All rights reserved.
You are receiving this email because you opted in by an email to the webmaster.
 
Our email address is:
alanfranciscus48@gmail.com

 

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cheddy


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speechless

 



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
lamassu


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With Epclusa (also now a generic), Mavyret and Vosevi available anyone who can afford the cost can be cured. Do we even know anyone who had to take Vosevi due to relapse after earlier treatment who was not cured by the Vosevi? Sure sounds like HCV can finally be eradicated, the cost of the drugs just needs to come down more.

 



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Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.
Tig


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HCV Advocate March 2019 EBlast

Among other valuable articles, they are announcing future plans to close their advocacy website. This seems to follow several Hep C websites and forums decision to shutter their doors. Is it possible, these once valued support sites, have outlived their usefulness or general interest? Time will tell... cry



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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February 2019 HCV Advocate E-Blast

February is upon us and it is a sweetheart of a month.  The HCV Advocate newsletter is packed full of interesting news to help in your educational interests.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Canuck


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I liked item #202 - it's a "further" on what we have all discussed here before ... "that size DOES matter" (that's a topic we have previously tossed around, and not just in regard to size of VL either!). I know, we have been here before (talking on this topic generally, high loads/low loads, infectious material/routes, etc.), but it's good to see these things being hashed about and info repeated in different ways at different times  ... "the higher the load, the more potentially infectious to others" we likely are. Stands to logic/reason, the law of averages/chance! There have been a few here who have wondered how much HCV their blood product transfusion actually provided them and all in one go! - akin to a HCV blood bomb (to quote). 

In a limited view, like in regard to the new DAA drug choices, high loads do not really matter (as much) now, as they used to (sorta), like in the early treatment days and the drugs of old, there, then, much more importance was held on VL counts, given the effectiveness of the old drugs

I couldn't believe I actually managed to track down the doc that told me I had had a past case of HepB (Hep B from waaaaay back in the 70's, i had seen him in the 80's), figured fer sure he'd be dead or it would be at least be a dead-end trying to track him down, but low and behold i found him, quite alive (no records tho)! Back in the old days when I had seen him, he said I was fine, would be fine, that I had passively spontaneously resolved that old case of HepB all on my own, that i was not a carrier, needed no treatment - carry on  he said! ... fast forward, oh, hm, we missed something!, it took me to 2015 to also find out that I had also had HCV all this time! 

But, while I had been looking for him, I also happened to stumble on a study he worked on (in his later research years) - his study claimed he verified that HCV could not be found stool samples, he and his group found none anyway - hm, makes ya wonder if his study might have also missed something there too, if HCV can conceivably be found in saliva!

April 22, 2017, I posted something in a thread called "About GT3's and our big ole fatty livers - sometimes size does matter!". High fat levels, and a little about high VL levels there too.

So, I'll leave it up to the admin/mods to relocate this "on and on" drivel there, if they think it lives better there than here!  ; )



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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December 2018

HCV Advocate E-Blast

Lots of new updates and current events. Check it out!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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November 2018

HCV Advocate Monthly E-Blast

This month has some updates on Gilead’s generics, among other interesting topics. Read up and get edumacated!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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The October HCV Advocate E-Blast. Stay informed!

Oct. 2018 EBlast



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Updated reference for clinical trials from HCV Advocate. This information provided by them utilizing data from the ClinicalTrials.gov website. It utilizes a drop down menu that makes searching available options easy.

http://hcvclinical.hcvadvocate.org/

 

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Canuck


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You mean like they may be coming away with something more than a belt or a cauliflower ear? Down for the count?, a wrestlers woe? 

Sometimes, aside from opening doors with paper towels, or washing my hands a lot, I want to wash the soles of my shoes and my tires when i get back from these trips to the hep facility i go to twice a year - from the parking lot stepping over the rat traps and crack heads hunkered down in their makeshift cardboard beds on asphalt trying to get a few winks in, to sidling up to the sardine can of addicts and fellow blood-letters for hours of shoulder to shoulder chairs at the very busy and crowded lab and docs exam rooms - I "do lunch" with many down there - I feel my chances increase a fair bit as far as exposure goes, at least twice per year. I always cross my fingers that the lab follows protocol, and that someone cleans the waiting room/luncheon room occasionally, besides that, I always hope no one is going to mug me or spit on me!   ;)  C.

I wonder what it is like to work in a prison, as far as feeling exposed goes? 



-- Edited by Canuck on Saturday 1st of September 2018 01:50:55 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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I watch the occasional MMA fight, among other violent pastimes and wonder, how many sportsmen and women contract something through the bloodletting? Besides having trouble obtaining life and medical insurance, do they think about it? The money and fame (albeit fleeting) can’t be worth what many on our pages have dealt with... ¯\_(ツ)_/¯ 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Canuck


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These are always a good read Tig - glad you post their Advocate.

I was interested in the title about catching B by biting and spitting! Took me a while to find that report but there is was finally on page 4. Vaguely interesting but lacking the people-behaving-badly parts I wanted to know about - the knock down, roll around, biting, spitting, scratching, hissing details. Oh well, nice to know sciencey people study these things, and that multiple studies have been done!



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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HCV Advocate

September E-Blast Newsletter



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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June 2018 Newsletter:

More 2018 Updates from the Intl. Liver Conference



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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lamassu


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Tig wrote:

May 2018 HCV Advocate Updates

Interesting study data on the issue of progression of fibrosis and steatosis, secondary to cannabis and coffee use. Im sure there are some people interested in that! 

wink

 

 My best take away was:

Abstract:

THU-365 Salvage treatment of HCV patients by Sofosbuvir, Daclatasvir, Simeprevir and Ribavirin after repeated treatment failures is associated with SVR and reduced risk of hepatocellular carcinoma - A. Hanafy, et al.

Study  Aims  and  Results:

To  evaluate  sofosbuvir, daclatasvir, simeprevir plus ribavirin treatment for 12 weeks for people who had previously failed a course of direct-acting antiviral therapy compared to a similar group who received a placebo (sugar pill). The goal was  to  compare  the  reduced  risk  of  hepatocellular carcinoma (liver cancer) between  the  treated  and untreated group. The two groups (50 people treated; 50 people untreated) were evenly matched by age and gender. 

The two groups were followed for two years. The cure rate was 100% and the treatment was safe
and well tolerated. 

Not only did this salvage therapy produce 100% cure rate, it also reduced the rate of liver cancer. This study demonstrates that we can cure everyone with hepatitis C if we can just put our minds, money, and drugs to the task.

However also browse this article which documented lower success rates for the sofosbuvir/daclatasvir/simeprevir/ribavirin combination therapy.



-- Edited by lamassu on Saturday 2nd of June 2018 01:46:35 PM



-- Edited by lamassu on Saturday 2nd of June 2018 01:48:37 PM

__________________

Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.
Tig


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We are continuing our conference coverage of the International Liver Congress 2018 and we have the following posters and presentations.

 

June 01, 2018 HCV Advocate EBlast

Thanks to HCVAdvocate.org 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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May 2018 HCV Advocate Updates

Interesting study data on the issue of progression of fibrosis and steatosis, secondary to cannabis and coffee use. I’m sure there are some people interested in that! 

wink

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Canuck


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Interesting Hep A info Tig! - I had only really been trying to follow the Calif. outbreak stats, quite interesting to see how many in Michigan as well! Maybe I'll re-post these newest stats over in Up-surge of Hep A in California .

... In 2017 and early 2018, four states reported major outbreaks of hepatitis A (HAV) to the Centers for Disease Control and Prevention (CDC). The list below reflects the numbers provided by the CDC and news reports at the time this article went to print. California: As of December 29, 2017: 683 cases; 443 hospitalizations; 21 deaths. San Diego is the site of the largest outbreak. Michigan: As of January 10, 2018: 658 cases; 539 hospitalizations; 22 deaths. Utah: January 10, 2018: 152 cases; 68 hospitalizations; no deaths. Kentucky: Reported 44 cases of HAV, but no cases resulted in death. The majority of the HAV outbreaks were among the homeless population and people who inject or take drugs ...  



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Another E-Blast HCV update. This has some interesting topics like the current Hep A outbreaks and meditation. We have discussed both recently.

HCV Advocate E-Blast 02/18

 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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The December 2017 HCV Advocate E Blast Newsletter. Reports on the recent Liver Meeting.

Dec 2017 EBlast



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Current reports from the HCV Advocate Drug Pipeline and Monthly report. Good stuff!

August 1, 2017

Aug 2017 Eblast Newsletter



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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