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Charles Gore Q & A's

The Live Chat is now over (sadly I have to go to a meeting). Thank you so much for all your questions.

Any questions that I didn't have time to get to will be passed to our Helpline and they will respond to you.

Charles Gore Live Chat

Q...I am a woman of 50 years. I have the virus for 30.genotype 1a. 800.000 viral load. Polymorphism CC. Fibrosis 2 ( light). normal transaminases.Good health.I have been offered triple therapy . I think maybe can wait for better therapies with fewer side effects.Is it a good decisión? Rebeca

A...Hi Rebeca, that's quite a tricky question to answer by email because the treatment decision is often complex. For most people there's more to it than just the state of their liver/general health. Some people have problems with stigma, even outright discrimination. Some people just hate having an infectious disease - I did treatment back in 2001 because I already had cirrhosis but after clearing the virus, the first time I was given a request for bloods by my doctor that said 'no known infection risk', , I almost cried. I hadn't realised how much I was impacted by the idea of having an infectious disease. There are also issues about the timing of treatment in your life. Do you have support now? Then there are possible financial implications. I'd really need to talk to you. You might find it useful to chat to our helpline which is staffed only by people who have or have had and have cleared hep C - 0845 223 4424. The one thing I can definitely say is that interferon free therapies are on their way. We just don't know exactly when. In the meanwhile there'll be better drugs but that still require interferon. The side effects will be better but interferon is still the major side effect problem.

Q...What are the chances to clear on triple if I got undetected only between week 8 and 12 despite a low viral load and no cirrhosis. I'm 1b CT 34 y.o.
Will I be eligible to a new interferon free treatment with protease inhibitors if I don't clear? Thank you

A...Hi, that's a bit difficult to answer without knowing which of the two drugs you're on and I'm not even sure the data exists for that exact 4 week period but it's obviously less than if you'd gone clear after 4 weeks. The good news though is that we are fully expecting that the new drugs will be available ESPECIALLY for people who have unsuccessfully tried treatment before. The Trust will certainly be fighting to make that happen.

Q...Has any research been undertaken to explain why null responders or slow responders fail treatment. If so is it likely that the new drug treatments will be of help to this group? Many of whom are now running out of time with advancing liver disease.

A...Yes but we don't have an answer. There is a new project starting now that will be looking to see if there are genetic factors involved by using genetic sequencing. Unfortunately it's a 5 year project so probably no answers for a while. However, it's looking like with the new interferon free drugs it won't matter. The latest trial data suggests that people clear whether they responded to interferon or not. This is because the way they work (directly stopping the virus from replicating) is very different from the way interferon works (basically boosting your immune system) although ribavirin does have some anti-viral effect.

q......When will Telaprevir become licenced in the UK for Genotype 2b treatment?

Richard Harvey

A...Telaprevir won't be licensed for G2 because it hasn't been shown to work well for that genotype - anyway interferon and ribavirin by themselves are very effective for G2

q,,,In the recent Q and A that Graham Foster did, he accepted that people continue to have problems after treatment, are you aware that people continue to have sometimes serious health problems, post treatment and that treatment itself which involve the use of some toxic drugs can affect people long after stopping therapy. This is certainly how the drugs affected me.

q....Hi, Graham Foster had many questions about prolonged post treatment problems experienced by many. Is the trust looking at this issue? What's your opinion?

q...The Trust’s Post Treatment Symptom Survey has helped a lot of people but perhaps is a bit out of date now. Have you any plans to do another so that all the people suffering now can tell their story and add to the growing call for the medical community to do some research?

A...I'm answering these three questions together because I'm a rubbish typist (ie very slow!). We are very aware of persisting side effects which is why we did the Post Treatment Symptom Survey which is on under resources/reports. It is a bit out of date now, although obviously still applicable. In it we call for more research and happily a researcher from the London School of Hygiene and Tropical Medicine is following people through and after treatment to get some more robust data on this. Unfortunately, because of the need for long follow-up it'll be a while before it's done - but we'll put it up on the site as soon as we have it

q...Have you suffered any stigma or discrimination because of your hepatitis C status?

I have but luckily pretty minor. Whenever I booked a dentist's appointment they would give me the last one of the day. When I challenged them about this, they told me it happened 'by chance'. But after that it stopped. Other people I know have suffered a lot, including one person who, on revealing they had hep C, were escorted from the (government) premises by security guards as if they had some plague. We also hear of people who are (illegally) fired becauser they have hep C.

The stigma often seems to be connected to drug use but it's important to know that as a disease hep C is not a drug users' disease. Out of the 150-180 million people currently living with hep C globally only 10 million got it through drug use. Most of the rest got it through unsafe healthcare!

q...How many people work at the HCT? Are they all patients?

17 including some who are part-time. Most but not all are patients because I very much believe in patient-led charities. That's why it was four people with hep C who set up the Trust (I'm just the one that got talked into running it and I still don't know how they managed to do that).

q...Does everyone get a test for the IL 28B marker when they get tested for their genotype? I understand that it can predict how successful treatment will be?

No they don't. It is predictive, although far from perfectly, but response after 4 weeks of treatment is even better. Also it's not proving much use with the emerging therapies. And of course it costs money

q.....Many people have been infected with Hep C through their hospital treatment, and those people have been divided into two groups, the fibrotic (stage one's) and the Cirrhotic (stage two's) and the government give ongoing financial help to those in stage two but no ongoing help to those in stage one. Could you tell me what you think of this two stage system Charles as many do not receive anything like the help they need, Glenn (CBC)

Why is the Caxton Foundation awards means tested where as the Skipton Fund is not? I was infected in 1970 and have to have a liver transplant. My health has been poor because of all the side effects from medication. Luckily my wife has been able to contribute to household income but it seems unfair to expect her to have this responsibility. We have had several expenses to do with hospital visits etc. home appliances and other expenses. Can we expect any further government assistance? Thank you, Robert Bryant.

Why does the government health and benefits departments give people with HEP C, such a hard time when applying for support. My partner was only diagnosed in January 2012, with type 1A geno, from infected blood supply's. She didn't ask to be infected, which has affected her ability to work now. Without the admirable support and help of the different charities and body's who are currently trying to help her with financial problems, she would be broken mentally and physically.

The government needs to put more effort into making people more aware and supportive, could a national TV campaign be launched to achieve this, and get better benefits?

Without you and other generous supporters people like my partner would suffer even more. Thank you.

A...I'll take these 3 questions together. The division between Caxton stage 1 and 2 is very odd because some people with early cirrhosis can be in much better shape than some people with just fibrosis but, for example, lots of symptoms. The Government is going to have to look at this and we have been talking to the Department of Health about it but nothing will happen until Lord Penrose's Scottish report is published at the end of this year. I think there is a real chance that people in stage 1 will receive something similar to those in stage 2.

Caxton is means tested because it has been set up as a charity and therefore can only respond to people's needs. Skipton though is a Government payment scheme so is not bound by charity rules.

We would love the Government to do a TV campaign but partly because of the financial crisis there is a huge reluctance to spend money on that type of public awareness. Over half the people living with hep C in the UK don't know and we aren't doing enough to alert them to the need for testing. The Trust is about to embark on a project to try to identify the type of person who is so far undiagnosed (if there is such a type of person) and how to reach them but we can't be sure it'll work

q...I am 56 and have hep c but I had no idea until I was diagnosed and feel in good condition for my age. My question is on lifestyle. I play golf and like to socialize which inevitably involves drinking. I don’t regard myself as an alcoholic but i do enjoy a drink. How much is too much, should I stop altogether?

A...I'm afraid the best bit of advice I can give you is to stop altogether. Sorry. I'm sure that's not what you want to hear. Alcohol is a bit like rocket fuel for the hep C. We honestly don't know what a safe amount would be and I'm sure it will vary from person to person, in the same way we can't predict who is going to develop fast progressing liver disease from their hep C and who might never ever have cirrhosis. I guess the answer would be to do treatment and clear the hep C.

Hi Charles. How far off is a vaccination for hep C?

A...that's a good question. Which, as you know, means I haven't got a clue. There have been reports recently of a 'breakthrough' but it's still extremely early days. If I had to guess I'd say 12-15 years. By then I very much hope that in the UK we have got hep C under control with very few new infections and the majority of those with it diagnosed and successfully treated.

q...Hi, I am a haemophiliac that had the virus for over 30 years before I had interferon treatment and cleared the virus. How much damage would my liver have gone through in the 30 years of virus attack ? Am I still at risk of cirrhosis and or liver cancer ?

A...As I said in a response earlier we simply don't know how much damage an individual will have. Some people reach cirrhosis within 20 years, some never. My guess would be that after 30 years you'll have some fibrosis. Because the collagen which is laid down by the liver and which causes fibrosis is generally reabsorbed once the inflammation stops, your liver damage may improve and the fibrosis disappear. Now that you no longer have hep C your liver certainly should not get any worse and therefore shouldn't develop cirrhosis or liver cancer BUT that is dependent on there being nothing else causing liver damage. If for example you started drinking very heavily or developed fatty liver, you would still be at risk

q...What do you see as the future for treatments of patients with Hep C?

A...Very bright. We are moving (even if the speed is a bit uncertain) into an era of short treatment with fairly mild side effects (very mild compared to current triple therapy) and 90+% success rates. In fact hep C will stop being seen as a chronic disease. It'll just be something that, if you're dignosed with it, you go and get treated for in 8-12 weeks and it's gone. I think this will help with the stigma too.

q...I remain HCV RNA positive with a high viral load and Fibrosis after three attempts at treatment, I am genotype 1b, I would like to have regular US doplar and/or Fibroscan tests at least once a year if not every six months however I have been told by my hospital they will only do these tests every two years, given that it was this particular hospital that infected me I expected a better response than this, how often should someone in my position be tested ? as once every two years seems unreasonable to me. Glenn (CBC)

A...Generally speaking the interval between tests depends on what action the results would lead to. If you're not intending to do anything whatever the results then every two years might be fine. If on the other hand it could prompt you to do treatment again then that seems long. Also if you have advanced fibrosis and are on the point of tipping over into cirrhosis then you may need them say yearly because if you have cirrhosis you need to be regularly monitored for cancer. If you have say stage 2 fibrosis, the problem is that the non-invasive tests are not wonderfully accurate in the middle range of fibrosis so regular tests may not actually tell you anything useful.

q...Hi, Do you have any news about interferon free treatments for genotype 3?

A...The current situation is that Gilead are seeing if their interferon free treatment should be extended in duration to improve results in G3 because it hasn't been as successful as expected over 12 weeks. The trials are ongoing but they are also looking at an arm with interferon just in case. In other words, the jury is out but we'll know by the end of the year and NICE will be looking at the drug (Sofosbuvir) in the next few months so if it works without interferon it should be available by the end of next year.

q..If someone has been treated with Telepravir, which is given only for 3 months because the virus might mutate and become resistant to it. if the treatment fails and that virus is then passed on to someone else, will it be resistant to Telepravir and affect future treatment?

A...That's a very hard question since I'm not a virologist, not even a doctor. However, at the risk of getting this completely wrong (but in which case I hope rapidly corrected by someone who knows), let me have a go. We talk about the hep C virus as if it's one thing. In fact it's a mass of billions of virus particles and they are not all the same. When resistance occurs what happens is that the number of resistant virus particles increases and these will indeed get transmitted. However, what happens next is not certain. In some people those resistant viruses may persist and that person would be resistant to possibly all protease inhibitors, at least for a time. But the newly infected person's immune system might start killing off the resistant viruses (the immune system does not work in the same way as the dirct acting anti-viral drugs). Equally, in people who have developed resistance it appears that the resistance often disappears over time so it's not sure that after a couple of years resistance is much of a problem anyway. Finally, the newer drugs currently in trials are so potent that resistance may not be relevant. So in summary ... it all depends!!

q...Do you think that it’s ethical for consultants to put people on interferon treatment now, if a person can afford to wait for the new treatments? Thanks

A...I do not think it's ethical to 'put' anyone on treatment. Treatment should be a decision by the patient with advice and guidance from the nurse or clinician and ideally input from other patients who have done it. But I certainly don't think it's unethical to suggest treatment now. As I responded earlier, the treatment decision is complex and depends on people's individual circumstances. There are so many reasons for dong or not doing treatment that have nothing to do with liver damage. Say I was really suffering from the symptoms or obsessively worrying all the time about whether I might somehow infect my small children (cuts, sharing implements that might have got blood on them etc), would it be unethical to give me treatment? Hardly.