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Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10438
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Although the HepatitisC Trust do some excellent work and have helped me in the past, I can't help thinking that if all these organisations put the money spent in ONE pot, they could get more patients treated / helped as with Cancer Research eg really, the amount spent on conferences , meetings etc of all the various charities, think-tanks advocate websites - The costs must be huge. Look at this poor lady used as an example on Twitter /Facebook for media purposes eg - Has she or her child been helped? www.facebook.com/STOPHepC.org/posts/10156032573585226 Where there's a will, there's a way, as Dr F, MonkMed and Greg J have shown us by action rather than expensive words. LG Edit : I am reminded of Sonix' little fable
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 |
Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10439
You rock LG, and luv the Sonix quote at the bottom too, maybe the NHS is finally getting wise, we live in hope aye. jim 3 years cured, Sof/Dac, thanks Doc Freeman, hepc only a distant memory, go for it ppl The following user(s) said Thank You: LondonGirl | |
Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10443
| Great news thanks for sharing. Hey LG I really hope you respond to this I think your experience's will be valuable info for these organisations. SVR 24 The following user(s) said Thank You: LondonGirl |
Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10453
| Hey Tina, Thank-you for your faith, however I doubt the HepC Trust would welcome me at all as an advocate or patient experience etc , as they are partially sponsored by Gilead . They know I'm on treatment with generics. However, one of their staff has been very kind to me in a long phone call when I was very down about previous consultant and general treatment by the NHS since diagnosis, bless her, they are good like that, but their idea of advocacy and mine differ somewhat ! xx ps see above comments I have highlighted in bold txt 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 |
Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10456
| Please also, anyone reading the link I have added at the bottom of my post regarding that poor mother and child, I am going to ask the people who have posted that if she was helped. The more the better and after all, there are some on here, that could help that one 'little starfish' ...... without too much financial loss. 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 The following user(s) said Thank You: pat1 |
Hepatitis C Trust UK - Latest bulletin 8 years 2 months ago #10458
Hi LG, the way I read the announcement is:
So even if the Trust didn't support someone or that person didn't feel they could work with the trust it wouldn't exclude them from the possibility of being involved. However, it would take a lot more personal advocacy and networking to achieve. 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 | |