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Author Topic: The UK has decided to let cirrhotics die  (Read 16119 times)

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Offline sickpuppy

  • Member
  • Posts: 51
The UK has decided to let cirrhotics die
« on: July 29, 2015, 05:09:43 am »
The UK has decided not to offer a 24 weeks course of Harvoni, Viekira or any other expensive DAA under any circumstance. It has also decided that instead, they will offer 12 weeks Harvoni + Ribavirin only to TX-naive cirrhotics.

TX-experienced cirrhotics will not get treatment (not even the 12 weeks one) if they have portal hypertension, have platelets under 75,000 or other retarded reasons. Not economically viable to save they say.

 

Document available here: https://www.nice.org.uk/guidance/GID-TAG484/documents/hepatitis-c-chronic-ledipasvirsofosbuvir-id742-appraisal-consultation-document-22
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GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present.

21/07/15 - TX start - Harvoni + Ribavirin 12 weeks.
Week 2 - UND
Week 4 - UND
Week 8 - UND
13/10/15 Week 12 - UND
19/11/15 - SVR4
8/1/16 - SVR12 !!!!!

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: The UK has decided to let cirrhotics die
« Reply #1 on: July 29, 2015, 07:03:50 am »
No words.
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CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline chino1969

  • Member
  • Posts: 117
Re: The UK has decided to let cirrhotics die
« Reply #2 on: July 29, 2015, 07:36:35 pm »
This is the ugly side of socialized medicine that many will realize once Obamacare is fully implemented.
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Offline clemmiez

  • Newbie
  • Posts: 2
Re: The UK has decided to let cirrhotics die
« Reply #3 on: August 04, 2015, 05:29:57 am »
This isn't a political board, but I feel I have to comment.  Actually no, Chino 1969 - It's the private insurance companies who are refusing to pay mostly. Nothing to do with your thought that Obamacare is "socialized medicine".  We have that already in Medicare and Medicaid (called MediCal in CA).  In fact some people in the US are suing Blue Cross, Anthem, and other insurers as they are being turned down because of the cost of the drugs, coupled with the fact that (according to the insurance companies) - they're not "sick enough".  One only gets these miraculous but obscenely priced drugs (thank you Gilead and Abbvie) if you can pay for them out of pocket, or your tests show you're a certain level of fibrosis or cirrhosis.  If it wasn't for Obamacare, I would have had an impossible time getting insurance at all because Hep C is a big, bad preexisting condition.  If it wasn't for the fact that I live in a state with its own health exchange and low-income programs, I wouldn't have been able to go to a hepotologist who had me get a fibrosure blood test and a fibrocan and then fought for me to get Harvoni.   I'm sorry that the UK National Health isn't paying yet, but there is private health coverage available there, too.  Are the private providers paying?  I know in Spain they are much like the US - only those who are "sick enough".   Other countries, including those with mandatory insurance like Germany, are covering it on a case-by-case basis.  Best of luck to all...and hopefully everyone who needs these drugs will be able to get them soon.
« Last Edit: August 04, 2015, 05:32:46 am by clemmiez »
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Offline Gary

  • Member
  • Posts: 6
Re: The UK has decided to let cirrhotics die
« Reply #4 on: August 14, 2015, 02:37:17 pm »
Hi, just wanted to mention a few things. I have completed the 24 week course  with  Harvoni. I had to provide a biopsy which I had done around 2008. My doctor was a great champion for this treatment and his office did quite a bit of leg work to accomplish this. I hope everyone who,reads this is aware of the coupon co-pay program through Gilead. My co-pay was $5.00 monthly. go to their website for the coupon. Don't exactly know why I was accepted into the program, and it did take a couple of weeks, but the meds  were sent to me at home every month. The insurance company was Encompass out of Atlanta.
   The other thing I wanted to mention. Be sure to get rid of your razors, and toothbrushes as soon as you are tested and have no detectable virus.
   I have just about 1 week till I get my post treatment viral load test and here's hoping it doesn't show up. good luck to everyone!
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Offline clemmiez

  • Newbie
  • Posts: 2
Re: The UK has decided to let cirrhotics die
« Reply #5 on: August 18, 2015, 12:32:24 am »
Best of luck, Gary!  I go for blood tests this week (week 4 out of 8).  Let us know how you're doing!
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Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: The UK has decided to let cirrhotics die
« Reply #6 on: August 18, 2015, 01:34:56 am »
Quote from: clemmiez on August 18, 2015, 12:32:24 am
Best of luck, Gary!  I go for blood tests this week (week 4 out of 8 ).  Let us know how you're doing!

Welcome to the forums clemmiez and Gary. And good luck on your Week 4 results clemmiez, and your post-tx results Gary!! :)

kim
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Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Gary

  • Member
  • Posts: 6
Re: The UK has decided to let cirrhotics die
« Reply #7 on: August 18, 2015, 04:55:27 pm »
Thanks Kim, got the blood work done today, will know the outcome on Thursday. The 20th. Thanks for the good wishes!
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Offline Joe NM

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  • Posts: 46
Re: The UK has decided to let cirrhotics die
« Reply #8 on: September 14, 2015, 01:01:00 pm »
If the UK is unable to provide treatment to people with cirrhosis in addition to other conditions, then I assume this is a cost-effectiveness reason? Because cirrhosis can resolve in up to 50% of cases if HCV is treated, and this can often help the other conditions as well.

If I were in the UK and this happened to me, I'd sue the drug companies. Reckless endangerment due to their pricing.
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HCV Case Manager
Type-1 diabetic
Connoisseur of battling insurance companies, and when that fails resorting to 'Sample Pharmacies' and sneaking insulin back from Mexico to survive.
Kindred spirit/admirer of all on this forum!
Here to help in any way I can!
EVERYONE DESERVES A CURE!

Offline Joe NM

  • Member
  • Posts: 46
Re: The UK has decided to let cirrhotics die
« Reply #9 on: September 14, 2015, 01:07:07 pm »
I guess I WOULD just mention that 12 weeks of Harvoni/ribavirin has been just as effective in studies as 24 weeks of Harvoni alone...so that's good, at least for people who can tolerate ribavirin...
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HCV Case Manager
Type-1 diabetic
Connoisseur of battling insurance companies, and when that fails resorting to 'Sample Pharmacies' and sneaking insulin back from Mexico to survive.
Kindred spirit/admirer of all on this forum!
Here to help in any way I can!
EVERYONE DESERVES A CURE!

Offline Gary

  • Member
  • Posts: 6
Re: The UK has decided to let cirrhotics die
« Reply #10 on: September 14, 2015, 03:14:25 pm »
Kim, got the results on the 21st of Aug....All clear! I' m cured ! Hope everybody has the same outcome. I got 2 of my friends that live out of state on the $5.00 per month copayment . One did 12 week and the other has been on it for 3 weeks. The one that has finished is virus free. He was geno 3a. Good Luck to all, and please try to get on the $5.00 copayment , it takes some work from your doctor , but it's doable, go to the Gilead site for the coupon. Best wishes, Gary
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