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TX: 21.07.03 - MAN WITH HAEMOPHILIA WINS FIRST STAGE OF FIGHT TO OBTAIN SYNTHETIC BLOOD



PRESENTER: LIZ BARCLAY


BARCLAY
A man with haemophilia has won the first stage of his legal battle to force a health authority to fund treatment he regards as safe. Peter Longstaff was infected with a range of conditions, including HIV and Hepatitis C during previous treatment using human derived plasma at the Royal Victoria Infirmary in Newcastle. He's one of 95 haemophilia patients infected with HIV at the same hospital and is one of just 17 to survive. He wants to be given synthetic blood to minimise the risk of further infection.

Haemophiliacs in Scotland, Northern Ireland and Wales already have access to synthetic blood, known as recombinant factor 8, they've had that access since 1998 and in February the government announced it would start providing it to all British haemophiliacs and not just those under the age of 16. But Peter Longstaff still hasn't been offered the treatment and has decided on his court action. Peter has the support of his partner Carol Grayson, who's from the group Haemophilia Action and he told me about his condition.

LONGSTAFF
I have haemophilia and my blood doesn't clot on its own very well, so as a consequence of that I need to take human blood products which the government was importing from America. A lot of these products turned out to be contaminated with multiple viruses, unfortunately many of us caught these viruses through using the products. I'm HIV positive, Hepatitis B positive, Hepatitis C positive and also I've had some contact with blood from CJD donors and all this was through NHS blood products.

BARCLAY
But you have been refusing treatment for the last three and a half years, why is that?

LONGSTAFF
Simply because I don't want anymore viruses.

BARCLAY
So what you're actually refusing then is human blood plasma?

LONGSTAFF
Yes, there's a safer product - a synthetic product - which most countries are using, including Scotland and Wales, but not England, England only uses it for under 16s, so people who are virally free - the rest of us have been written off pretty much.

BARCLAY
So the government says in February that it would start making that synthetic blood available to other patients.

LONGSTAFF
Well I know my doctor's told me it would be at least another three years before people in my situation would receive this product.

BARCLAY
Have they given you any reasons as to why that should be?

LONGSTAFF
Because the product's being phased in slowly and it will be younger people and people with maybe one virus, such as Hepatitis C, will receive the product first, the ones with the most viruses will receive it last.

BARCLAY
What kind of a message do you feel that's giving out?

LONGSTAFF
Well I believe they've written us off. I think a lot more of us will be dead in three years time.

BARCLAY
Carol Grayson I know you're Peter's partner but you're also from Haemophilia Action, what kind of a message do you think this is giving out?

GRAYSON
I think what they're saying to people is we've infected you and as far as we're concerned we're not going to give you any safe treatment now, we've completely written you off.

BARCLAY
Are you simply saying then that you feel that these patients have been left to die?

GRAYSON
Yes they are being left to die and I think there's a case for discrimination here. I believe that people are being discriminated both on age and also on the fact that they're virally infected. So it's incredible - they've actually been infected through their NHS treatment but the government are saying right so we've infected you and we're not even going to give you the safest treatment now, we're not bothered about you.

BARCLAY
We've actually had a statement from Clare, Dr Claire Bradford, director of public health at Newcastle Primary Care Trust, now she says the Department of Health brought out guidelines in 1998 which made this new treatment, recombinant factor 8, available to children under the age of 16 and to previously untreated patients. Patients in Newcastle who fill those criteria get that treatment. But in January this year the government made an announcement that it was going to put in £88 million over three years to enable other patients to get that treatment and nothing has happened basically is what Newcastle seems to be saying because Peter isn't already getting it - is that the case?

GRAYSON
That's exactly the case and there are actually one or two people in other parts of the country who are over 16 and do have viruses and their health authorities have actually agreed to give them the treatment and our health authority has taken a very hard line. Well what I would like to say very strongly is most of the haemophiliacs I know probably don't have three years, many of the people I'm in contact with are very, very ill and they can't wait three years for treatment.

BARCLAY
Why do you think the human blood plasma that's being used or has been used in this country in the past hasn't been safe?

GRAYSON
The blood that we've used in this country, particularly from America, hasn't been safe because the plasma companies sourced from the highest risk donors, basically they went into prisons, they used skid row donors and we know, for example, from the evidence that's already been shown in the States that in some prisons the prisoners themselves were administering the plasma programme - the paperwork. So, for example, if you had a prisoner with Hepatitis that was glowing yellow all he had to do was go to the prisoner administering the programme and they could falsify the name, which is absolutely appalling.

BARCLAY
So this is why Peter has been refusing treatment for three and a half years, he doesn't want to take those risks. You've now won the right to a judicial review, what happens next?

GRAYSON
Well we'll have an opportunity to go to court and put all these arguments forward, we'll be able to talk about the safety violations past and present, why we feel that the blood for money trade is immoral, which is one of the other reasons why Peter is declining treatment, we do not believe in the use of paid donors because historically donors have been exploited for blood, particularly in developing countries and this is still going on, particularly in China where thousands of people are being contaminated. The reason being that unscrupulous plasma companies are using the same collecting equipment to collect plasma from many different people thereby spreading infectious diseases.

BARCLAY
Peter it could take quite a long time for this process to go through, how long can you wait?

LONGSTAFF
Well not too long, I believe I need a - possibly may need a liver transplant possibly within the next year, so I certainly would need to be on treatment in that time.

BARCLAY
And if you were not on the new treatment in that time what decision will you make?

LONGSTAFF
I'm determined not to take the human plasma. I think I'll stick to my guns, I just don't believe in the trade, I don't need other people to suffer for me to treat myself.

BARCLAY
Peter Longstaff and his partner Carol Grayson. Lord Morris of Manchester is president of the Haemophilia Society. Lord Morris, the government is spending £88 million over three years on making recombinant available - factor 8 - available to all patients, all haemophiliacs and there's a working - a practice working group deciding who should get it first but in the meantime time's running out for people like Peter Longstaff.

MORRIS
Exactly the new treatment will not be phased in until three years time, in the year 2006. If a week is a long time in politics, three years is an eternity to wait, as Peter is waiting, for safer medical treatment. The Scottish parliament described prioritising health of people with haemophilia faced with preventable further disability as a moral imperative. If it's a moral imperative in Scotland, surely it's a moral imperative here too. Otherwise what we have, Liz, is a two-tier, two-class and two-faced system of healthcare in this country.

BARCLAY
That's the way it would certainly seem but can it be done any quicker, what can be done?

MORRIS
I think first of all we started too late. Scotland started earlier, anything we possibly can do to speed things up now should be done but it should have been done before. And if you look at the expenditure involved £88 million may seem a lot of money but look at what's spent in other policy areas compared with this. And I'm saying what the Scottish parliament said, namely that this is not a matter of people trying to jump any kind of queue, it's about moral standards, this is a moral issue and to argue otherwise is to bark not just up the wrong tree but in the wrong forest.

BARCLAY
Are we any closer then to getting a public inquiry into what's gone wrong?

MORRIS
It wouldn't seem so, though we had one in the case of the sinking of the Marchioness, the Paddington rail disaster, other disasters which added together hasn't taken nearly as many lives as the infection of people in the haemophilia community. And I'm saying now that this is and must be a priority of priorities.

BARCLAY
Lord Morris from the Haemophilia Society thank you very much.







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