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Author Topic: Nhs v NICE  (Read 10093 times)

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Offline Spacetastic

  • Member
  • Posts: 4
Nhs v NICE
« on: October 26, 2016, 04:11:42 pm »
Hi, diagnosed a month ago. Acquired in 1981 now 56 years old and regretting decisions of my youth. Anyway, my consultant has put me on a waiting list for treatment as I'm not ill enough to warrant treatment. I have FLD but until I get worse, I'm not eligible. This is because the nhs has decided to ration treatment to the most sick. I have worked for the NHS all of my life, paid my national insurance and taxes but now at the point of need I am being rejected. Maybe I should take up heavy drinking , get cirrhosis and then I'll get treatment? So

Offline andrew90

  • Member
  • Posts: 71
Re: Nhs v NICE
« Reply #1 on: October 26, 2016, 04:42:47 pm »
have you had your liver tested for damage? aka Fibrosure blood test? how are they determining you are not sick enough?

i look like your average healthy 25 year old but i have F2/3 liver damage from Hep C seams my approval though insurance went threw without question and should get my meds by next week

i would advise against drinking heavily you do not want Cirrhosis

you had Hep C for about 33 years and a cure just came within the past few years  im sure new medications will come our and be much cheaper so you would easily get treatment.
but i would definitely see if your able to appeal like we do in the United States many people get approved after the first denial 

DON'T GET DISCOURAGED THIS FORUM IS GREAT SUPPORT. IM SURE SOMEONE FROM THE UK CAN CHIME IN AN BE OF MORE HELP THEN ME.
« Last Edit: October 26, 2016, 04:45:35 pm by andrew90 »
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Spacetastic

  • Member
  • Posts: 4
Re: Nhs v NICE
« Reply #2 on: October 26, 2016, 04:49:53 pm »
Thank you. Just spitting my dummy because I'm so cross. I'm really not going to drink xxx

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Nhs v NICE
« Reply #3 on: October 26, 2016, 07:40:28 pm »
Hi, good to know you aren't resorting to drink.  ;) Without knowing your liver status other than having FLD or how long you have been told you are likely to wait it is difficult to advise but some in a similar situation are taking the option of sourcing their own medications. The Hepatitis C Trust (UK) has the following to say regarding those unable to access treatment via the NHS who wish to follow that path.  http://www.hepctrust.org.uk/information/treatment/buying-hepatitis-c-drugs-online



Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Spacetastic

  • Member
  • Posts: 4
Re: Nhs v NICE
« Reply #4 on: October 27, 2016, 05:17:43 am »
Thanks Gaj, spoke to hepc trust yesterday. They were brilliant. Having reflected on this over night, I am looking on the bright side and thinking a 3 month trip to another country may be the way to go. Always a silver lining!  :)

Offline Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Nhs v NICE
« Reply #5 on: October 27, 2016, 05:58:16 pm »
Well, it is legal to import 3 month's medication into the UK for personal use and it is becoming easier to find doctors/hospitals prepared to monitor your treatment. On the other hand, if you can afford and would enjoy an extended overseas holiday then that's always an option too.
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Nhs v NICE
« Reply #6 on: October 27, 2016, 08:57:15 pm »
A 3 month trip might not be necessary. I am less familiar with options in the UK than I am in the US, but if you've exhausted those resources, you might want to check out HEP blogger Greg Jefferys https://www.hepmag.com/blogger/greg-jefferys Probably best to click on his own website (on the right).
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew j

  • Member
  • Posts: 477
Re: Nhs v NICE
« Reply #7 on: October 28, 2016, 09:57:02 pm »
I think you're right, Lucinda, when you point to 'exhausting all other options'.

Access to treatment is getting better all the time.
On one side, there are hepatologists pushing everything they can to get better access, and on the other - pharmaceutical co.s, who would much rather sell drugs than not sell them.

... With respect, Space, your consultant sounds a little ... disinterested?



« Last Edit: October 28, 2016, 10:10:02 pm by andrew j »

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Nhs v NICE
« Reply #8 on: October 28, 2016, 10:00:14 pm »
I am not sure I'd call him my consultant. Best way to describe him is that if I needed to go that route, I'd start with him. I am surprised...he has helped countless people.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline andrew j

  • Member
  • Posts: 477
Re: Nhs v NICE
« Reply #9 on: October 28, 2016, 10:11:40 pm »
Ah - Space's consultant, Lucinda.
(I've modified).


Offline Spacetastic

  • Member
  • Posts: 4
Re: Nhs v NICE
« Reply #10 on: October 29, 2016, 03:44:12 pm »
Thank you all so much for responding to me.I will contact my gp who is fabulous and ask him to try and speed the process up. I am on a waiting list for my fibro scan which is probably and 8 week wait. I'm not sure when I'm meeting my consultant again, so I will get my gp to find out.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Nhs v NICE
« Reply #11 on: October 29, 2016, 11:59:58 pm »
Wonderful!!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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