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From: TSS (216-119-144-28.ipset24.wt.net)
Subject: Re: vCJD PATIENT NOTIFICATION EXERCISE BEGINS
Date: September 9, 2004 at 7:01 am PST

In Reply to: vCJD PATIENT NOTIFICATION EXERCISE BEGINS posted by TSS on September 9, 2004 at 6:47 am:

PROTEST AT SCOTTISH PARLIAMENT (7th September 2004)

Scottish haemophiliacs, Andy Gunn, and Bruce Norvill, were arrested at a demonstration outside the new Scottish parliament building in Edinburgh which opened its doors for the first time yesterday. The two men interrupted the first debate and then daubed red paint on the walls of the new building which cost £430 million. They were protesting at the multiple infection of hundreds of UK haemophiliacs with HIV, hepatitis B and C, through their plasma treatment, and the fact that haemophiliacs have now been exposed to the blood of donors who have since died from vCJD, and the government's failure to hold a full and open public inquiry into blood safety. Many haemophiliacs are now dead.
In the case of exposure to vCJD, this was preventable. For years haemophiliacs had fought for the right to be treat with a safe, synthetic product, recombinant. Our group Haemophilia Action UK first wrote to the government and our local Health Authority in Newcastle in 1995, asking for all haemophiliacs to be given recombinant treatment as we were concerned over the possible risk of contracting vCJD via blood products. We were turned down in writing in the Spring of 1996 on the grounds of cost. We know now that Newcastle haemophiliacs had their first exposure to the blood of donors who have since died from vCJD in November 1996. Had the authorities listened to us this would not have happened!
We only found out about my husband's 12 exposures to vCJD after we were sent two leaked documents, one from a British plasma company dated 1997, one from the NHS Executive dated 1998, advising doctors not to tell patients why their plasma products had been recalled. We informed the "Guardian" and Newcastle "Journal" newspapers along with "Private Eye" in 2000, and a item on this subject later went out on the BBC's "Watchdog" programme. As a result of the media articles, doctors then wrote to their patients asking them if they wished to be informed of exposure to vCJD. We were finally told of my huband's exposure to v CJD in 2001.
We are expecting further letters to be sent to recipients of blood products later this month informing them of vCJD risk assessment in relation to blood products. The Health Protection Agency have informed me to-day that this information is not currently in the public domain but we understand from the Department of Health Press Office that there will be a press release shortly and NHS Direct have informed us that a helpline will be in operation from around 22nd September.
Haemophilia Action UK supports peaceful protest within the law, however we fully appreciate that the haemophilia community is at the end of its tether. For years we have had to deal with lies and cover-up over blood safety. We can no longer use our own plasma because of the risk of vCJD. We cannot rely on plasma from America meeting safety requirements as we are aware of recent safety violations. Haemophiliacs are now litigating against four major U.S. plasma for past infections. Our group was able to set up contact with a U.S. law firm with the help of American haemophilia campaigner group, "Hemophilia Justice", and the first UK haemophiliacs travel to Chicago to sign depositions in October.
Anyone who cares about blood safety and anticipates the possibility of them or their family needing a blood transfusion for an operation, childbirth, accident etc, should write to their MP and put pressure on the UK government to hold a public inquiry into blood safety. UK government feels it is not in the interest of the general public to have a public inquiry into blood safety. Surely it is in everyone's interest to ensure that UK citizens receive safe blood products. We believe next time it will not just be haemophiliacs that are infected with blood borne viruses and exposed to vCJD but the wider population. v CJD is no longer considered a "theoretical" risk in blood products, but is now considered an "appreciable" risk. You too can make a difference!

With thanks

Carol Grayson (Haemophilia Action UK)





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