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Posted on 07/05/2002 11:03:14 AM PDT by BLOODHOUND (askel5)
Agonising wait for treatmentBy Louella Houldcroft
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| A haemophiliac who went on a treatment strike more than two years ago after being turned down for the safest blood products by a North-East hospital has been told it will be at least another six months before he is given the new course. Peter Longstaff, from Jesmond, Newcastle, became infected with HIV and hepatitis C after being given contaminated human blood products on the NHS. He is one of more than 4,500 haemophiliacs across the UK who became infected with one or both of the viruses during the 1970s and 80s when infected plasma from high-risk, paid donors was being imported from America. More than 1,200 have since died. Last year there was new agony for haemophiliacs when it was revealed they had been exposed to the human form of mad cow disease - variant CJD - and sufferers say there is always the potential risk of new viruses being transmitted in human blood products. A safer synthetic product - known as Recombinant clotting factor - has been given to children and uninfected adults since April 1998. But four years later infected sufferers are still given the less safe - cheaper - human-derived plasma. Following a meeting with the Newcastle Hospitals Trust last week, North-East haemophiliacs have now been told the Government has still not decided whether the clotting factor should be made available to all haemophiliacs. Since he stopped taking the human plasma, Mr Longstaff says he has suffered considerable pain due to internal bleeding into his joints. He said: "I am not prepared to continue injecting myself with a product that has already infected me with three and possibly more viruses and I think it is morally wrong for the Government to expect me to do so." Mr Longstaff's partner Carol Grayson, chairwoman of Haemophilia Action UK, said infected haemophiliacs were being "discriminated" against. "Haemophiliacs infected through their NHS treatment are being punished for a second time," said Ms Grayson. "Recombinant is the safest product and by denying it to infected haemophiliacs the message that we are getting from the Government is that they don't matter - they are already infected so why give them the more expensive product? "After all the suffering they have already gone through, a safe treatment is the least they deserve." Newcastle Hospitals Trust said they were awaiting Government guidance before making any decision about the prescription of recombinant. A spokesman for the Department of Health denied that it was simply an issue of funding and said a shortage of recombinant last year had delayed their decision. "The Government is considering whether to make recombinant available to all haemophiliacs in England and is taking full account of representations made by the cross-party parliamentary committee on haemophilia, the UK Haemophilia Centre directors and individual groups," he said. "A decision will be taken later this year." Lord Morris of Manchester has campaigned for several years for compensation for haemophiliacs infected through the NHS. He said: "It is cruelly wrong that people with the same disability are given or refused safer medical treatment according to the area where they live. "And more especially so when contaminated blood products that are prescribed for them have already taken the lives of over 1,000 haemophiliacs in the NHS's worst-ever treatment disaster." |
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TUK Physicians Told Not To Tell Patients Of Possible CJD Blood ConcernsBy Louella HouldcroftIC JournalNovember 24, 2000 Doctors were advised to not tell patients that blood products used in transfusions were feared to have been taken from a donor infected with CJD. A leaked memo sent to haemophilia centres by a laboratory supplying blood products orders the recall of the products because a donor was found "not to have met the current health requirements for CJD", the human form of mad cow disease. The memo from the Bio Products Laboratory, in Hertfordshire, acting on the advice of the Lothian Ethical Committee, recommended to doctors that "Recipients (patients) should not be informed that the product that they have received has been recalled for this reason". Haemophiliacs in the North-East already infected with HIV and Hepatitis C last night said they were "furious" about the revelation. Since the memo was written in 1997, seven of the 85 British victims of CJD have since been identified as donors before they showed obvious symptoms of the disease. A spokesperson for Haemophilia North, herself a partner of a co-infected haemophiliac, said: "The haemophilia population is just sick of this. These people already have up to four viruses in their bodies through treatment that has been given to them on the NHS - now we discover there is a risk of a fifth. "How can we ever believe what we are being told?" The letter, faxed to all haemophilia centres including the North-East branch at the Royal Victoria Infirmary, states that "BPL have initiated a recall of the following product." It continues: "Subsequent to donation, the donor was found not to have met the current health requirements for CJD. "The advice from the Lothian Ethical Committee is that the recipients (patients) should not be informed the product they have received has been recalled for this reason." Jane Martin, sales and marketing director for BPL, said this was only meant as guidance for the doctors.
"Ultimately, it was the individual doctor's decision whether or not to disclose the information to the patients," she said. "The recall was done very quickly and efficiently as soon as a risk was perceived. "I can understand the situation from the haemophiliacs' point of view but hindsight is a wonderful thing and at the time we were acting on what was considered to be the best advice." Yesterday it was revealed the NHS was considering banning anyone who has received blood transfusions from giving blood themselves amid rising concerns that they may knowingly pass on the fatal human variant of BSE. Such a move could cut Britain's 1.9 million volunteer donors by up to 10pc and create such huge shortages that transfusion services would struggle to meet demand. A spokesman for the Department of Health said: "The whole issue of cleanliness of blood is under review. "The eligibility of patients who have received blood transfusions is just part of that." One of the main criticisms to come out of the recent BSE inquiry was that information was kept from the public in a bid to prevent "mass panic". Dr Peter Hamilton, haemophilia centre director at Newcastle's Royal Victoria Infirmary, said: "It seems to me that perhaps they should not have made this recommendation. It is our view patients should be told everything relating to their treatment and how it may affect them." |
I thought surely even the Jackal Pack Media couldn't ignore such ghastly cynicism and behaviour- but once again, I was wrong.
"Who is this guy?"
"Where'd he get a story like that?"
"He's just another clinton-hater..."
My next story about the Chinese stealing/buying/walking away with our missile & nuclear secrets got exactly the same treatment....
The site looks fantastic, btw ... been too long since I'd checked in.
(Thanks again for the heads up, Joe.)
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