Hepatitis C Trust UK - Latest bulletin

This topic has 5 replies, 4 voices, and was last updated 9 years, 2 months ago by Gaj.

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8 February 2016 at 1:14 pm #11484
Jimmy6429
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- Recovery Champion
@jimmy6429
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
8 February 2016 at 2:01 pm #11488
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
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
8 February 2016 at 2:43 pm #11498
LondonGirl
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- Guardian Angel
@londongirl
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
8 February 2016 at 3:02 pm #11501
LondonGirl
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- Guardian Angel
@londongirl
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
8 February 2016 at 3:21 pm #11503
Gaj
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- Guardian Angel
@gaj
Hi LG, the way I read the announcement is:

Hep wrote:

”This is what is happening…..”

NHS Announcement
To organise giving treatment for hepatitis C in England, the NHS has divided the country into twenty two area networks. These networks are called ‘Operational Delivery Networks’ (ODN). They are a new way of organising how and when people receive treatment. Each network will have a lead hospital, a hub, that will support spokes (smaller hospitals or clinics). It is expected that each of the networks will organise regular meetings with key people within their area, to monitor progress and address any issues. Key people will include people who have been affected by hepatitis C.

“……and the Hep C Trust would like to have as many of our own people as possible as the key people that the NHS will include in the process.”

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
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