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TX: 05.07.04 - HOW LARGE IS THE HEPATITIS C EPIDEMIC IN THE UK ?

PRESENTER: PETER WHITE
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

WHITE
We now know that thousands of people were infected with Hepatitis C by NHS blood transfusions before 1991 when the risk of contamination was identified.  Today the Skipton Fund - that's the body which was set up to manage ex gratia payments to people - is due to send out applications forms to those who are seeking to demonstrate that they were inadvertently infected. The payments start at £20,000 rising to £45,000 with conditions which are now in an advanced stage but they don't constitute an admission of liability by the NHS.
Annie Walker has Hepatitis C and should have received one of those forms this morning.  When I spoke to her she explained how her condition had gone undiscovered and untreated for many years and how she was now reacting to that treatment.

WALKER
I've actually had it so long that I've got a cirrhotic liver and I think this is making it more difficult to sustain a response.  I have tried the treatment before and it's worked but the virus comes back.

WHITE
And can you just give us an idea of how that makes you feel?

WALKER
Well I feel awful because you have to get over the treatment, which is quite a drastic and long treatment, it can be between six months and a year, and they're very strong drugs which make you feel pretty horrible.  And then when the virus comes back you're left with trying to get over the treatment and having the virus back again and the virus gives side effects, such as fatigue, aching muscles, depression - all sorts of things.

WHITE
And to be blunt, I'm afraid, I mean what do you think your long term prospects are?

WALKER

If I can get rid of the virus I think I'm going to be alright.  But if I keep relapsing and not being able to get rid of it my only hope is new treatments in the pipeline, which won't come on board until about three or five years I think and hoping that my cirrhosis won't get worse, which it probably will because the virus will still be attacking it.

WHITE

What are the issues for you though about proving how you actually contracted this - is that going to be a difficulty either for you or for other people?

WALKER
Well it certainly is because it was 30 years ago.

WHITE
And is there a sense that maybe they'll be asking you questions about drug use, about sexual activity?

WALKER
Oh I'm sure of it, I'm sure that's going to happen.  And if they're going to do that then did I share a toothbrush with someone on holiday who had Hepatitis C and they didn't know they had it?  There's so many different routes of transmission.

WHITE
So you still think you might have quite a fight on your hands?

WALKER
I do but I'm hoping not but I've got a feeling that there will be.

WHITE
Annie Walker.  So how far does the government scheme deal with the grievances of those who went in good faith for treatment from the NHS and ended up with serious diseases?  Graham Foster is professor of hepatology at Queen Mary College University of London and consultant hepatologist at the Royal London Hospital.  Graham, what, first of all, is the size of the problem of Hepatitis C amongst those who've had blood transfusions - who is at risk and how many?

FOSTER
The problem, I'm afraid, is we don't know what the real risk of Hepatitis C is in the UK.  Let me first of all say that people who've had blood transfusions after 1991 should be reassured that after 1991 blood products were made safe and the chance of transmission after that date is very low indeed.  But for people who had blood products before 1991 we really don't know the scale of the problem in the UK, we have some very vague estimates but they're only estimates I'm afraid.

WHITE
Why is this - why don't we know because I think the detection rate in some other countries is much higher than ours isn't it.

FOSTER
You're absolutely right in that in the UK we have been very much behind other countries in looking into the problem and getting on top of the Hepatitis C epidemic.  To give you just a few examples - in France, since 1995, there's been a publicity campaign telling people who might be at risk of Hepatitis C what the risks are, they've organised treatment centres, they've organised awareness campaigns.  In the UK, 2004, the Government is starting to develop an action plan.  So the French have been at this for 10 years, identifying people, treating people, dealing with the problem, we've just started.

WHITE
So there are a lot of people like Annie Walker, in fact maybe even worse off than Annie because they haven't even been discovered yet?

FOSTER
My real fear is the number of people out there who've had blood or blood products and still haven't been identified and I see every month people coming to my clinic who've had blood products, who haven't been picked up and they're absolutely devastated to learn that they're carrying this virus and some of them were infected 25-30 years ago and they all ask the same question - why didn't someone tell me earlier?

WHITE
Are these ex gratia payments sufficient for those who have suffered?

FOSTER
I think the payments are very welcome but in my own view they're really too little and too late.  And if you think of the suffering, the distress and the pain and anguish that people have suffered £45,000 for someone who's got a life threatening illness is really rather small beer.  Remember too we're talking about families of people who have died from this virus, they're going to get nothing.  So if the main breadwinner from a family has been killed as a result of contaminated blood from the NHS there's no compensation.

WHITE
Professor Graham Foster thank you very much indeed.

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