Dr Peter Kernoff, was a well renowned Consultant Haematologist who had worked at both the Oxford Haemophilia Centre and the Royal Free Hospital in London. Under his care were haemophiliac patients born with a disorder where there blood does not clot. In order to treat their hereditary condition, haemophiliacs were often treated with American clotting factor concentrates manufactured from the plasma of paid donors. During the 1970s and 1980s this was sourced from “high risk” donors including prisoners, prostitutes and gay men often carrying deadly viruses.
In the Spring of 1983, Kernoff, made a spectacular miscalculation regarding the danger of the AIDS virus in US factor concentrates. In a now infamous interview in a Haemophilia Society publication, Kernoff was asked about the risk of AIDS. This was at a time when experts in the US such as Dr Donald Francis, an epidemiologist at the Centre for Disease Control were warning in 1982 that it was very likely the AIDS virus could be transmitted through blood products which meant haemophiliacs were at great risk. In fact the first cases in haemophiliacs in the US were already emerging that same year.
Kernoff was asked,
Question… Could haemophiliacs get AIDS?
Answer… Of course its possible. But I’d expect AIDS to remain a rare disease. The idea that there’s an epidemic of AIDS among haemophiliacs is ludacris.
In an interview with the Northern Echo on 14th March 2018, Carol Grayson, longstanding campaigner/researcher and widow of haemophiliac Peter Longstaff who died after being given contaminated blood infected with HIV and HCV, highlighted how AIDS warnings were missed by UK haematologists including Kernoff and the British government in January 1983. They had already ignored the 1982 concerns. See following link,
Widow claims Contaminated Blood warnings were missed
Recently, Dr Andrzej Rejman, who was a Senior Medical Officer at the Department of Health (responsible for Haematology) from 1989 to 1987 gave evidence as a witness to the Infected Blood Inquiry chaired by Sir Brian Langstaff. The Blackpool Gazette reported that,
Experts looking into the impact of the blood scandal, which saw up to 30,000 NHS patients infected with HIV and hepatitis through contaminated blood transfusions in the 1970s and 80s, were asked to ‘tone down’ their reports, a court has heard.
It is with some interest that this author also notes a letter dated, 22nd February 1991 detailing the contact between Rejman and Kernoff posted on the Facebook page of the Factor 8 group where Kernoff is informing Rejman of a couple of writs he received in relation to hepatitis infection.
This author has long highlighted over decades that haemophiliacs including her late husband were never told the hepatitis risks of their treatment so they could make an “informed” decision whether or not to take factor concentrates. (The same happened when the AIDS risk emerged.) The withholding of key evidence on the dangers of hepatitis C (previously known as non-A, non-B hepatitis) during the time of the 1991 HIV litigation was backed up by a legal opinion from Matthias Kelly QC, the former Head of the Bar Association who saw key HIV litigation documents provided by Grayson and her late husband Peter Longstaff in the early 2000s. On reviewing the signing of a now infamous hepatitis “waiver” within the litigation settlement which prevented haemophiliacs (who were not even tested for hepatitis C at the time) from taking a legal case for their infection, Kelly concluded the following,
Tony Mallen solicitor acting for haemophiliacs “did play-down the significance of hepatitis C” saying that it was “no big deal.”
In addition, the risks were significantly played down by haemophiliacs own consultants, whilst at the same time, government delayed the introduction of a hepatitis C test until months AFTER the signing of the hepatis waiver. As Matt Kelly QC points out:
At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”
I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.
The waiver was signed by all haemophiliacs in May 1991 and resulted in a paltry “out of court” settlement where government escaped public scrutiny of their blood policy documents and doctors and local health authorities avoided investigations into their treatment of haemophiliacs and families.
In the February 1991 aforementioned letter from Rejman, writing to others involved in the government side of the HIV litigation, he details the following in relation to Kernoff,
- During a brief conversation with Dr Peter Kernoff, of the Royal Free Hospital, he mentioned to me that he has received a couple of writs in respect of hepatitis infection in haemophiliacs.
- These are individuals that are HIV negative, and as such would not be covered by the HIV haemophilia settlement.
- I believe that any that are HIV positive would have to agree not to raise hepatitis in any further litigation , but this obviously does not include those not in the scheme.
- Dr Kernoff did not believe that the Department of Health was a named defendant at present, but I felt you would wish to be aware of this.
This author (who has seen much of the HIV litigation documents unredacted and knows how damning they are) notes it would not have been in the interests of the government or Dr Kernoff for haemophilia cases to go to court for either HIV or hepatitis C due to key evidence alleging liability based on a series of delays, withholding of key information/evidence and catastrophic failures relating to safety of treatment.
The launching of hepatitis cases where haemophiliacs did not have HIV coincided with the beginnings of the destruction of government documents and hospital medical records highlighted in media stories throughout the years following the HIV litigation. Haemophiliacs that did have HIV were then discovering for the first time that they had been tested often without permission for hepatitis C, had a positive result but had signed away their rights to litigate for hepatitis viruses. In order to take a case to court for alleged negligence, Grayson and Longstaff first had to challenge the waiver and to do so relied on being successful in accessing legal aid.
Their first point of call was to return to the solicitors that had represented them in the HIV litigation but increasingly a case was emerging that their own lawyers were allegedly implicated in holding back key evidence from their clients and had even lied about their chances of success of winning which they had later discovered were deemed far higher than they had been told in 1991. On that score, a note found in old litigation files read… “I can no longer lie to my clients” referring to an opinion that the chances of winning with regard to those infected from US factor concentrates had “significantly increased.”
What this author did find out was that in some cases, soon after 1991, the very same lawyers that had lied to HIV haemophiliacs were suddenly taking on cases of haemophiliacs with hepatitis C where they did not have HIV and had not signed a waiver. Incredibly they were also using the damning hepatitis evidence from the HIV litigation, never shown to HIV positive haemophiliacs at the time of their cases or before they signed the waiver. Although haemophilia hepatitis C cases were now being funded by legal aid, (so lawyers got paid)… they were never actually progressing the cases to be heard in court. Grayson and Longstaff had not one but 3 complaints upheld by the Office of Supervision of Solicitors against obstructive lawyers including allowing a case to deliberately go out of time.
A decade after the HIV litigation ended, Grayson teamed up with a haemophiliac named Peter Mossman co founder of the Manor House Group assisting lawyers with his case as well as supporting her husband’s waiver case. There were angry calls in writing from Mossman and other haemophiliacs to investigate one particular individual at the Legal Services Commission that was refusing to examine the HIV litigation evidence on hepatitis C and was alleged to be deliberately blocking cases, closing them down as legal aid certificates came to be renewed. I was later informed by a solicitor of the fact that government were notified of cases where they were the defendant by those deciding on whether legal aid should be granted… “forewarned is forearmed” as the saying goes. Haemophiliacs were concerned that this might be why their cases went on for many years without moving.
Some haemophiliacs such as Colette Wintle could not access legal aid at all, prevented from taking a case for hepatitis infection due to the fact that her husband worked and his income had to be taken into account.
One haemophilia legal case known to this author did however proceed and was WON though government denied knowledge of such cases when they received a Freedom of Information request from Grayson. This author spoke to the person involved at some length over a period of time following her case. Again this win demonstrated that had the evidence collected in the HIV litigation to support original litigants been presented in court in 1991, that there was a much stronger chance of haemophiliacs winning their cases than they were led to believe which should have been not only for HIV but also hepatitis viruses. Indeed the baseline arguement of the original litigation was that had more been done in relation to protecting haemophiliacs from hepatitis many would not have become infected with HIV. The decision to put factor concentrates onto the market first in the US before finding a way to virally inactivate was one of the worst and most dangerous decisions ever made regarding a treatment and hepatitis experts warned of this BEFORE factor concentrates hit the shelves for the first time.
In February 1996, this author wrote to Leonard Levy at the Department of Health in response to a letter received from him. she stated,
Many questions have still to be answered. Why did it take this country so long to utilize its own blood products? Why did this country use American blood products for so long when it was a well known fact that there were more contaminants in the American products. Was this an example of false economy for which many people have paid the price with their lives as a result of HIV and hepatitis C.
May I remind you of a recent case where the Plaintiff a carrier of the haemophilia gene won her case against the Health Authority, one of the main points being:-
“That the Health Authority administered to the Plaintiff American Factor VIII clotting factor which the Defendants, their servants or agents knew or ought to have known, was more likely to contain a hepatitis virus than English clotting agent which was already available.”
The Inquiry has been notified of the haemophilia hepatitis case that was won using the HIV litigation evidence but whether it will ever be examined is another matter as it would indeed open up a large can of worms in terms of how the original HIV litigation was handled, the many haemophilia hepatitis cases without HIV that then became “blocked” and which parties could be found liable. This author alleges this would likely be government, health authorities and some individual practitioners. (In America, the pharmaceutical companies did accept UK haemophilia cases that could demonstrate a certain level of proof, causality, tracing batch numbers to known infected prison donors for example) and cases are now closed in the US.
It is important to highlight also that although haemophiliacs were unable to take a case in the UK under the Product Liability Act for hepatitis C infection (as some whole blood cases did) as haemophiliacs infection occurred before a certain date, one aspect was very relevant to the HIV litigation. The BMJ highlighted that, Justice Burton ruled in 2001 that, “the NHS should have taken steps sooner to reduce the risk of transmitting the virus in blood and should have introduced screening by March 1990.”
Had this happened, haemophiliacs could have been tested with their informed consent BEFORE considering the waiver in 1991 and made an “informed” decision on whether or not to sign away their rights.
The Haemophilia community is tired of being abused and manipulated by government, their doctors and some past lawyers. Their message to all concerned is… “the game is up”! Long standing campaigners knew early on from the 1990s that relevant parties were conspiring to shut down legitimate legal cases. Interested parties destroyed documents, hid key evidence and blocked haemophiliacs every step of the way but families never gave up. Nor will they stop fighting until proper compensation is paid to haemophilia victims, partners and the bereaved. They should have received compensation 30 years ago for All viruses instead of facing delay after delay denying them a public inquiry and dirty tricks being played blocking the recommendations of the privately funded Archer Inquiry denying them compensation based on lies once again. They must also now be compensated for exposure to v CJD but that is another story that will be written by this author shortly. Campaigners have learnt never to put all their eggs in one basket. They are prepared as ever and will continuing fighting until they get what they deserve.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”