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From: TSS (
Date: September 13, 2004 at 7:54 am PST

----- Original Message -----
From: Carol Grayson
Cc: Carol Grayson
Sent: Monday, September 13, 2004 2:33 PM


Dear Graham,
I understand that you have recently been appointed to work as Chief Executive of the UK Haemophilia Society. I would like to introduce myself. My name is Carol Grayson and I run an organisation called Haemophilia Action UK. My husband Peter is a severe haemophiliac, infected with HIV, hepatitis B and C, through factor concentrates, and more recently exposed to the blood of donor(s) who have since died of v CJD. His brother, Stephen, also a haemophiliac contaminated through plasma, died of AIDs in 1986.
I did not get on at all with your predecessor, Karin Pappenheim, as so often she refused to listen to grass roots campaigners, despite the fact that we had collected information/evidence on blood contamination for many years. I am delighted she has now left. It is through the efforts and information from our group working with the Newcastle "Journal" (refer to their website under "haemophilia" "hepatitis" "CJD" etc), and contacting Lord Morris Of Manchester, that we were able to pressurise the government to hold an investigation, albeit an "informal, internal investigation", into the documents surrounding blood and contamination from the 1970s and 1980s. I recently received a letter from Health Minister, Melanie Johnson, informing me that the results should be out shortly, she is asking civil servants to speed up the process. We anticipate a whitewash! We urge the Haemophilia Society to campaign for a full and open Public Inquiry as little has been learnt from the past !
contamination of haemophiliacs with HIV and hepatitis C.
Despite offering to submit our own government documents of the era that we acquired, we have not been asked to submit our documents or to meet with the Department of Health on this issue. We fully understand that to view our documents which are extremely damning, would no doubt put pressure on the government to hold a full and open Public Inquiry into the mass contamination of haemophiliacs, referred to in parliament as "the biggest medical treatment disaster in the history of the NHS". It goes on, with the latest fears over the transmission of vCJD through blood and blood products. Our group has campaigned for the use of synthetic products since 1995. In anticipation of the possibility of vCJD in blood products, we established personal contacts some time ago with families and professionals living or working with CJD. We also have an excellent solicitor and QC, who have supported us and provided their services to us free of charge at difficult times when Legal Aid ran !
We have had meetings over the last few days with our solicitor to discuss legal action with regard to v CJD. He is now prepared to take a case forward for haemophiliacs and other patients who have been informed of their exposure to vCJD through blood and blood products. I stress that there is no currently no blood test to establish that a person has been infected with vCJD but our solicitor believes there is a case for those exposed to vCJD under the "Product Liability Act". He has experience of using this law and winning with another blood case, although this was not a vCJD case. Blood cases will be dealt with in a different way to cases of vCJD through eating beef. Obviously we cannot go into details of information/evidence our group Haemophilia Action UK has collected over the years on v CJD and blood, we can only say that we believe there is plenty there to worry the proposed defendants. Our solicitor intends to proceed with a class action, the process has started, !
and we invite anyone exposed to vCJD through blood and blood products to join us in this action.
Anyone interested can do this by phoning Pat Rafferty of Mckeags Solicitors, 1-3 Lansdowne Terrace, Gosforth, Newcastle Upon Tyne, NE3 1HN. Telephone 0191-2131010. Fax 0191-2131704. E-mail We trust that you will circulate this information to your members as soon as possible and put this letter on the UK Haemophilia Society website. We will be circulating this letter to other interested groups.
I would just like to inform you that the Haemophilia Society, Government, haematologists, and the original HIV solicitors said we could never litigate against the U.S. plasma companies for past HIV/hepatitis C contamination. "Haemophilia Action UK" did not accept this advice and sought contact several years ago with American haemophilia campaign groups. Through joint international co-operation "Haemophilia Action UK" and "Hemophilia Justice", and with the support and assistance of "Hemophilia Justice", "Haemophilia Action UK" was able to establish contact with U.S. law firm, Lieff, Cabraser, Heimann, Bernstein, initially for my husband's case and then this was opened this up for other haemophiliacs. The first UK haemophiliacs will travel shortly to America to sign depositions.
If you need any further information please do not hesitate to contact me. You have my permission to print this letter in your magazine and circulate it to the haemophilia community.

Yours sincerely

Carol Grayson (Haemophilia Action UK)

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