The taintedblood Timeline - what really happened...
"Dr Pickles questioned whether it was more ethical for recipients of hGH to learn of the risks from the media rather than from their doctor." (see page 10, point 8, of PDF link below)
"This committee decided that there was no need to create anxiety among hGH recipients by telling them not to donate blood or carry donor cards and further action was considered unjustified as the risk of infection was so small and the risk of transmission through transfusion so uncertain."
"However concern had been expressed at the ethics of informing young people that they might have a lethal infection which could not be identified and for which there was no treatment."
NOTE: We would suggest that this is not the first time this concept has been used on patients where bad news has been disseminated, as if through osmosis, via the media. Ethics aside, it is clear that this practice suits both physicians and the Department quite nicely.
15.02.09 - Haemophiliac Contracts vCJD from Plasma:
We would like to draw attention to the news leak and general mishandling of the first case of a UK haemophiliac to contract vCJD who had been treated with plasma products. We understand that none of the agencies dealing with the haemophilia community, such as the Haemophilia Society, were informed of what had happened and none of the 4,000 people known to have received vCJD-implicated batches of plasma products were afforded the opportunity to have any help or counselling prior to this announcement.
In September 2004 health officials wrote to 4,000 people with bleeding disorders, warning them that they were at a "small increased risk" of variant Creutzfelt-Jakob disease, the human form of mad cow disease. Most of these people were haemophiliacs.
Following the publication on 23rd February 2009 of the report and recommendations of the Lord Archer's Independent Inquiry into the issue of contaminated blood and blood products (see 3rd link below), TaintedBlood very much hopes that, following this latest disgraceful example of Department of Health incompetence over the handling of 'at-risk' patients, the Government finally tackles this appalling scenario head on and deals with it once and for all. This is the very least that could be expected for this small, vulnerable, grievously damaged community.
NOTE: TaintedBlood would like to express particular disgust at the way in which this news was released. We understand that none of the agencies dealing with the haemophilia community, such as the Haemophilia Society, were informed of what had happened. None of the 4,000 people known to have received vCJD-implicated batches of plasma products - most of whom were haemophiliacs - were afforded the opportunity to have any help or counselling prior to this announcement. We do not, however, express any element of surprise, since we have been warning of exactly this scenario since 1995/1996.
"it is a misconception that the risk of contracting Hepatitis C was lower if patients were given UK products instead of American although it would have reduced the risk of catching HIV."
We would suggest that this statement is fundamentally flawed. It is the risk factors of the individual donor population that determine the overall level of risk, not the pool size during fractionation. UK sourced products often came from specially selected volunteer donor panels. Dr Hay goes on to state:
"...the irony was that if self sufficiency had been achieved then a larger proportion of haemophiliacs would have been exposed to donations from donors who went on to develop vCJD."
We absolutely disagree with this statement and pose the following questions as to who was responsible for allowing CJD (BSE) to enter into the human food chain: Who ignored all the warnings of scientists such as Dr Dealler? Who disregarded the significance of prions in blood products as shown in the minutes/background paper of the ACVSB meeting of January 1991? Who failed to develop and implement genetically-engineered factor products, i.e. recombinant, at the earliest opportunity?
We find it disturbing to see the chairman of the UKHCDO making such comments in the Daily Telegraph, since this was the very paper that, only 9 days earlier, had leaked devastating news about the first haemophiliac found to have vCJD at post-mortem. This patient was technically in the care Dr Hay in his role as chairman of the UKHCDO. We find it completely mystifying that on release of this article he did not speak out.
Comment: We feel the need to stress that BSE should never have made its way into the human food chain in the first place. It is, however, even more regrettable that Dr Charles Hay failed to seize this opportunity to apologise to the haemophilia community about the manner in which this news was broken. We are appalled to see him use the word irony in connection with a human tragedy of this magnitude.
Type: Press Article
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Lord Morris of Manchester: "The other issue to which I must finally refer is that of Crown immunity, on which the Archer report raises in commenting on behaviour of the Blood Products Laboratory (BPL). The report says:In July 1979, the Medicines Inspectorate visited BPL. They reported that the buildings were never designed for the scale of production envisaged. They commented: "If this were a commercial operation we would have no hesitation in recommending that manufacture should cease until the facility was upgraded to a minimum acceptable level.".
"...The report then says: "BPL was rescued by Crown Immunity", and goes on to say that, "the existing plant continued production, relying on Crown Immunity to dispense with all the requirements of the Medicines Act, but was able to meet only about 40 per cent of the national requirements".
Lord Morris of Manchester: "Surely, words have lost their meaning if this does not mean that by the use of Crown immunity, a relic of feudal England, the lives of countless haemophilia patients were blatantly and gravely put at risk."
"...There could be no clearer text for describing the enormity of the use by the BPL of Crown immunity to dispense with all the requirements of that renowned and vital statute. I beg to move."
Type: Lords Hansard
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