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TOPIC: Hepatitis C Trust UK - Latest bulletin

Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10438

  • LondonGirl
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Access to the new treatments in England

The new treatments in England will begin to be prescribed by the NHS in early March. These treatments are for genotypes 1, 4 and some genotype 3s. More details of the new treatments can be found here.

There have been some really encouraging trial results for new treatments for all genotypes. The Trust expects that all genotypes will be offered a new treatment by the NHS in the next one to two years.

The new treatments will be made available to all of those who are eligible. The NHS are likely to give the treatments first to those who are in the most need, as many hospitals don’t have the capacity to treat everybody at once. The issues which might mean that people are given quicker access to treatment are things like, the severity of any liver damage or whether they have co-infection with HIV.

You need to make sure you are in the queue for treatment at the hospital of your choice. You might find that different hospitals can give you access to the new treatments quicker than others. Some patients already know the date they will start treatment in March. If you haven’t already, you need to get in touch with the consultant whose care you are under or get in touch with your GP if for some reason you are not currently under the care of a particular hospital.

If you are concerned about how quickly you are being offered access to the new treatments make sure you call the helpline on 0845 223 4424 or 020 7089 6221 from a mobile or email us at This email address is being protected from spambots. You need JavaScript enabled to view it.

Be the voice of people living with hepatitis C

Make sure your opinion is included in decision making processes.

Help ensure patients get the hepatitis C treatment they are entitled too.

And have your voice heard!

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.

We want to ensure that each network has a strong patient presence and voice that represents all of the groups effected by hepatitis C, including the South Asians, people who contracted the virus through infected blood products or injecting drug use.

In each of the network areas, we are organising a patient council. There will be two main objectives for the Councils: 1.To represent the patient voice at network meetings providing the patient experience, raise concerns and discuss issues.
2.To provide patient perspective and representation at a local and governmental level. This will include a variety of activities including feeding into government consultations, speaking in public and raising awareness.
Our hope is that the patient councils will be autonomous, setting their own agendas and providing the true patient experience.

We will bring all the groups together and hold a patient conference, support groups and individuals in all activities and advocate for patient voices to be heard in all arenas.

Expenses will be provided and training that will include: •Influencing skills
•Public speaking
•Media training
•Understanding how the NHS works with regards to hepatitis C
To get involved in one of the patient councils or to just find out more about their work please email activism@hepctrust.org,uk

Report on patient's experiences

In early 2016, The Hepatitis C Trust will be producing a report reviewing hepatitis C services in England from the patient’s perspective. We will be conducting interviews with a range of different people living with hepatitis C, to gather their experiences of living with the virus and of engaging with awareness, testing and treatment services.

The Trust wants the report to provide a platform for the patient voice to influence service improvements, through our work with parliamentarians and policymakers.

We are looking for a balance of perspectives, and will be speaking to patients who contracted hepatitis C in a variety of different ways, as well as to those who are still living with hepatitis C and those who may have cleared the virus through treatment.

If you would be interested in sharing your story with us and/or have any suggestions for how services could be improved – from awareness through to treatment and care – please email Grace Everest at
This email address is being protected from spambots. You need JavaScript enabled to view it..

All patient interviews will be anonymised.

Media spokespeople

If you would be happy to talk to the media about having been affected by hepatitis C. We would really like to hear from you.

If you are interested email This email address is being protected from spambots. You need JavaScript enabled to view it.

Facebook and Twitter

If you would like to voice your support but cannot commit to getting involved with the Patient Councils or as a media spokesperson, please be sure to connect with us on Facebook and/or Twitter.

We will keep you in touch with developments as they happen and give you a platform to voice your support for people effected by hepatitis C.

Gilead Campaign

A new patient media campaign, supported by a number of patient groups, will be launching this year and we are looking for people to share their experiences about living with hepatitis C.

The campaign, which is being led by Gilead, aims to encourage and empower people living with hepatitis C to want, and have, better care and support no matter how or when they were infected. A key aspect of this is giving people living with hepatitis C a voice.

It’s really important that the campaign represents all people living with hepatitis C and we’d like those involved to share their knowledge and experiences of key issues and challenges they may face, but also everyday successes.

If you are interested in learning more about the campaign and perhaps getting involved, please contact Health Unlimited at This email address is being protected from spambots. You need JavaScript enabled to view it.


Cambridge Study

Researchers at Cambridge University are looking for people to interview who have been prescribed Sovaldi.

They are also seeking to interview clinicians, members of advisory committees and executives from NICE, the Department of Health, NHS England and industry.

The research will examine the price and funding of new sofosbuvir based treatment for hepatitis C, including instances when it is prescribed alongside daclatasvir.

For further information about this study, please contact:

Amanda Hoey, Department of Sociology, University of Cambridge, This email address is being protected from spambots. You need JavaScript enabled to view it. or 07968 140301

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
There's a story about a little boy that was on the beach throwing back starfish that had washed ashore. A man came along and saw the little boy throwing back the starfish and told the boy, "Little boy, you're wasting your time. There are thousands of starfish washed ashore, you can't possibly throw them all back. This is nature's way. You're wasting your time, you can't make a difference." The little boy looked at the starfish he was holding, then threw it back into the ocean and said, "Made a difference to that one."
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
Last Edit: 5 years 8 months ago by LondonGirl.
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Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10439

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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
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Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10443

Great news thanks for sharing. :cheer:

Hey LG I really hope you respond to this I think your experience's will be valuable info for these organisations.
SVR 24
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Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10453

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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
Last Edit: 5 years 8 months ago by LondonGirl.
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Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10456

  • LondonGirl
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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
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The following user(s) said Thank You: pat1

Hepatitis C Trust UK - Latest bulletin 5 years 8 months ago #10458

  • Gaj
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Hi LG, the way I read the announcement is:

Hep C Trust 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
:cheer: :cheer: :cheer:
Last Edit: 5 years 8 months ago by Gaj.
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