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From: TSS (
Subject: Re: Woman: Husband may have mad cow from blood 'if confirmed, would be the third incident'
Date: September 4, 2004 at 3:08 pm PST

In Reply to: Woman: Husband may have mad cow from blood 'if confirmed, would be the third incident' posted by TSS on September 4, 2004 at 8:54 am:

Haemophiliacs fear vCJD will not be diagnosed
By Liam McDougall , Health Correspondent

PATIENTS exposed to variant Creutzfeldt-Jakob Disease (vCJD) through contaminated blood products are arranging for independent tests to be carried out on their brain tissue in Scotland after they die.

At least three patients who received blood and blood products from donors subsequently found to have vCJD, the human form of mad cow disease, are contacting lawyers to organise the postmortem investigations at Edinburghs CJD Surveillance Unit, the UKs national centre.

They want scientists there to examine samples from their brain, pancreas, tonsils and spleen after they die to establish whether they also have the incurable brain-wasting condition.

At present, is it unclear whether the disease can be transferred through blood-to-blood contact. Although two recent cases have emerged in the UK where recipients of vCJD-infected blood were also found to have the disease present in their bodies after death, the government maintains that infection through blood and plasma products remains a theoretical risk.

If the patients  all exposed to vCJD in the 1990s  are found to be incubating the disease after death, it would provide the strongest evidence yet of blood-to-blood transfer and spark a massive compensation case against the government and the NHS.

Peter Longstaff, from Newcastle, was exposed to vCJD-contaminated blood products 12 times between 1996 and 1997. However, he was not told about the exposure by doctors until March 2001.

Just months before he was given the infected blood products, Longstaff requested that he be given synthetic products because of concerns about possible vCJD contamination. That course of treatment was refused on cost grounds.

The 46-year-old  who was also infected with HIV and hepatitis B and C through blood  is now so ill that it is feared he may have just months to live.

His partner, Carol Grayson, believes Longstaff is showing symptoms of vCJD, although he is in the advanced stages of liver disease.

We feel we have no choice but to take this action in the event of anything happening to Peter, she said. For so many years we have been lied to and the truth about Peters condition has been kept from us. We want an independent postmortem to be done so that we know exactly what Peter has been infected with.

If Peter dies of liver disease its a possibility the postmortem would concentrate on that only and possibly miss the fact that he may have vCJD. We just want to be told the truth about what Peter has been given.

The family says they will contact their solicitor this week to arrange for tests to be carried out at the Edinburgh centre. Grayson said if evidence of vCJD was found, she would launch a legal case.

Peter Mossman, who was given vCJD-infected blood products in 1996, did not find out about the possible contamination until earlier this year. Mossman, from Cheshire, is also to contact his lawyer to arrange for a postmortem examination in Edinburgh.

He said: I firmly believe that I have been infected with vCJD and I expect this course of action will confirm this. Weve been fed a bunch of lies about what weve been given for too long.

Mossman, who founded the Manor House Group for haemophiliacs infected with hepatitis C, said he would be asking more patients to arrange for independent tissue analysis. The action was expected to be discussed at a meeting of the group today.

Bruce Norval, a haemophiliac from Fortrose, Inverness-shire, said he too planned to have his pancreas, brain and spleen analysed by the doctors. Ive been discussing this with my doctor for three years. Without a doubt there will be more people who will want to do this because they want to get to the truth.

On Tuesday, campaigners who received infected blood are to protest outside the new Scottish parliament, the first day of parliamentary business.

News of the move comes a week after the Sunday Herald revealed that the Department of Health in England is preparing to send out a mass mailing to patients who received blood products before 1999. The letters, to be posted to patients across the UK at the end of this month, will inform people that they received vCJD-infected blood and may be incubating the disease.

The action by ministers follows news last month that millions more people could be susceptible to vCJD than previously supposed.

The discovery of the infection in a patient with a different genetic make-up to all previous victims has sparked the concern, prompting fears of a hidden time bomb. It means instead of 21.8 million potential carriers in the UK, there are more than 51 million.

Two people who received blood from blood donors who later developed vCJD have now died. In the latest case, investigated by members of the CJD Surveillance Unit, the victim did not die from the condition, though a postmortem examination revealed the agent responsible for causing vCJD was present in the patients spleen and lymph nodes.

Professor James Ironside, director of the national surveillance unit, said it was absolutely possible that there may be an epidemic. He added: Im not in the business of scaremongering, but quite clearly the idea that this problem is on the way out is unfortunately not the case at all.

05 September 2004


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