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31 May 2016 at 11:58 pm #18150
Great story here congratulations Kim Crisell
http://www.dailymail.co.uk/health/article-3616795/Patients-pay-1-000-life-saving-drugs-online-cost-NHS-35-000-doing-doctors-warn-s-big-risk.html
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
1 June 2016 at 12:24 am #18151Thank you Hazel
Fantastic
I have to send this article on to a few people in the UK it’s fantastic ty ty
Ariel1 June 2016 at 12:46 am #18153Congratulations to Kim and David on a great article.
And good to see there are also consultants in the UK prepared to go public about monitoring patients.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
1 June 2016 at 3:16 am #18162Yes, thanks Gaj, I have been itching to get out of lectures and back to computer to correct that.
So,thanks too to David Ritchie in that article and great to see redemption co-author Dr Andrew Hill
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
1 June 2016 at 3:43 am #18164Awesome stuff, thanks for sharing Hazel. Great advertisement for generics also. Em
1 June 2016 at 4:07 am #18166Thanks, Hazel. Great to see the message is starting to seep through. And thanks also for your own great efforts.
But I must say, the Gilead response was a bit thin.
“A spokeswoman for Gilead said the company would negotiate on price if asked. ‘We remain ready and willing to continue discussions with the government and NHS England in the public interest and in a constructive manner,’ she told Good Health.”
Still, this is a big step forward from the usual “not available for comment”, and it almost seems like Gilead is accepting that the ball is now in the NHS court.
Dear NHS, what are you waiting for? Don’t you read the news in France?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).1 June 2016 at 4:31 am #18167I had some fun in the comments section, and Kim says there is a Times interview pending.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
1 June 2016 at 5:47 am #18172But I must say, the Gilead response was a bit thin.
“A spokeswoman for Gilead said the company would negotiate on price if asked. ‘We remain ready and willing to continue discussions with the government and NHS England in the public interest and in a constructive manner,’ she told Good Health.”
This is a significant change in attitude. Prior to this the Gilead party line was:
Gilead defended the price. “We believe the price of Harvoni reflects the value of the medicine,” it said in a statement. “Unlike long-term or indefinite treatments for other chronic diseases, Harvoni offers a cure at a price that will significantly reduce hepatitis C treatment costs now and deliver significant health care savings to the health care system over the long term.”
YMMV
1 June 2016 at 6:32 am #18177Thanks Hazel
A very well written and balanced article presenting the facts as they stand today … let’s hope there’ll be more journalists and medicos willing to stand up and draw attention to the gross injustice of one company buying the rights to a life saving medicine and then extorting governments, insurance companies, and patients for access to it.
The tide is turning …
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂1 June 2016 at 11:15 pm #18230Fantastic story guys!
SVR 24
6 June 2016 at 11:25 pm #18539Lots of heroes in that article; Dr Freeman, UK Drs Andrew Hill and Graham Cooke – Extra bravery award goes to the patient Kim
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC -
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