Grayson with her late husband Peter Longstaff early 2000s. Peter died in 2005 as a result of being given Contaminated Blood
Yesterday Friday 3rd February 2023 marked the final day of oral submisions to the Infected Blood Inquiry, set up in 2018 by Sir Brian Langstaff to investigate how haemophiliacs with an inherited clotting disorder came to be infected with HIV and hepatitis viruses as a result of their factor concentrate treatment made from pooled plasma. (Whole blood victims are also included in the Inquiry but they have an entirely separate case to haemophiliacs.) Much of the plasma was collected in the US from “high -risk” sources such as prisons, skid -row donors, drug addicts, gay men and sex workers. Other plasma came from Central America countries where the poor sold their blood for a few dollars.
The following was a short guide written by this author Carol Grayson (Haemophilia Action UK) on the 21st January 2003 and was an overview of some key points and themes within our then campaign which began in 1994 to raise awareness of hepatitis C infection in haemophiliacs, many were also infected with HIV and before that hepatitis B. It was sent to journalists, government officials, MPs and lawyers to draw awareness to a BBC programme Face The Facts which had gone out on the 3rd August 2002. Grayson’s address and other personal details have been removed.
Much of the evidence now being used by the Infected Blood Inquiry was discovered, saved and utilized by Grayson and her late husband Peter Longstaff from the 1990s. They devised the key themes surrounding the Contaminated Blood scandal which would need to be examined should an inquiry ever materialize. These themes were then ignored and rejected by government for decades. The Newcastle Chronicle reported, that Mr Stein KC for Grayson,
paid tribute to the work of campaigners like Carol and colleagues such as Colette Wintle, Mark Ward and the late Peter Mossman – whose funeral was a year to the day before the inquiry’s final hearings. He said without them, the Inquiry itself would never have happened. Later in the day Inquiry counsel Jenni Richards KC repeated this.
Carol’s campaigning work over decades “had foreshadowed so much of what this inquiry has been considering”.
The Chronicle also stated,
Speaking on the last day of evidence at the Inquiry, Carol told ChronicleLive: “What I was saying back then [decades ago] is the same evidence that has been used over the Inquiry. I had that evidence and no-one was listening.”
HAEMOPHILIA ACTION UK
HEPATITIS C HISTORICAL OVERVIEW (UPDATE) (Copyright) – Carol Grayson
Campaign Co-ordinator- Carol Grayson
On 3rd August 2002 at 12 .30 lunchtime Radio 4 broadcast “Face The Facts” which looked at the case of haemophiliacs infected with multiple viruses, hepatitis C, hepatitis B, HIV, and recently exposed to v CJD through NHS blood products. It discussed what is termed in the House Of Commons and Lords as “the worst medical treatment disaster in the history of the NHS” and the failure of the Government to hold a public inquiry despite overwhelming evidence that much of this contamination could have been prevented. Unfortunately the press generally and indeed many professionals have failed to understand the background to this issue and have tended to portray the contamination of haemophiliacs as an “unavoidable accident” which is highly distressing to the haemophilia community. The haemophilia community maintain that if the Government and professionals had read the literature/research available and heeded the warnings with regard to hepatitis B infection and plasma collection from the 1960s onwards it would ultimately have saved many lives with regard to the then unknown viruses of hepatitis C and HIV which emerged in the 1970s. We hoped that the Radio 4 program and the accompanying information would raise awareness and finally challenge this myth.
The research below was done by myself. I accessed all the medical journals and books used as reference material at Newcastle University Medical Library, so health care professionals cannot claim ignorance with regard to the warnings about using imported plasma and the dangers of hepatitis viruses. The information was on their doorstep. The evidence presented is only a fraction of what is available.
I am not a doctor, I have a nursing and library background and have the following qualifications RMN, ENB 612, 730 CERT. I have considerable experience working with HIV/hepatitis from the mid- 1980s both in this country and in an advisory capacity in Russia (1987). I remain on the nursing register and keep myself up-to –date although I am no longer working. I am now a full-time carer to my haemophiliac partner who is infected with HIV, hepatitis B and C and has recently been exposed to v CJD, his brother also an infected haemophiliac died of AIDS in 1986.
HISTORICAL EVIDENCE OF INFORMATION KNOWN WITH REGARD TO HEPATITIS RISKS FROM PLASMA.
The risk of transmitting hepatitis through the use of large-pool plasma was recognized as long ago as 1945. During the Korean War soldiers were treat with pooled plasma in field hospitals and the spread of hepatitis through using pooled plasma was observed.
1970. The book “The Gift Relationship” by Richard Titmuss was first published by Allen And Unwin. The book directly compared our blood transfusion service to that of the United States. The U. S. fell far short of the recommended safety requirements for the collection of blood. The book contained many references to research on the subject of paid donors and strong testimony on the failures of the American system by experts in hepatitis. It was frequently quoted in the field of haematology.
WHY THEN DID BRITAIN DECIDE TO LICENCE THE IMPORT OF PLASMA CONCENTRATES FROM THE U. S. IN 1973 IGNORING THESE WARNINGS? THERE WAS NO SHORTAGE OF OUR OWN BLOOD DONORS, HOWEVER THERE WAS AT THIS TIME A LACK OF INVESTMENT FROM THE GOVERNMENT IN BPL, WHICH LED TO THE RUNDOWN OF SERVICES AND LIMITED PRODUCTION OF CLOTTING FACTORS.
THIS IS THE REASON WHY OUR GOVERNMENT BOUGHT PLASMA FROM AMERICAN BLOOD COMPANIES, TAKEN FROM LARGE DONOR POOLS AND MARKETED BEFORE MONEY WAS PUT INTO RESEARCH TO ELIMINATE THE HEPATITIS VIRUSES WHICH WAS ESSENTIAL TO SAFETY.
WHO WAS ON THE PRODUCT LICENSING COMMITTEE AND BLOOD SAFETY COMMITTEES IN 1973 THAT LICENSED THE IMPORTATION OF PLASMA PRODUCTS?
The Titmuss book was read and referred to by Dr David Owen, Health Minister in 1974. It was after reading this that he decided to opt for self-sufficiency in blood products stating so in 1974/1975 on SAFETY grounds. Owen made a parliamentary commitment for this country to be self-sufficient by 1977 and put money aside for this purpose. (Documented in Hansard).
WHY DID THIS NEVER HAPPEN?
WHY ARE WE CONTINUALLY DENIED A PUBLIC INQUIRY?
WHY WERE HIS LETTERS (1987/88) TO THE PARLIAMENTARY OMBUDSMAN IN WHICH HE CALLED FOR AN INVESTIGATION INTO WHAT HE DESCRIBED AS “GROSS MALADMINISTRATION” IGNORED? (I HOLD COPIES OF DR OWEN’S LETTERS).
WHY HAVE HIS PAPERS, WHICH SHOULD HAVE BEEN KEPT UNDER THE 30YEAR RULE BEEN PULPED?
LORD OWEN HAS RECENTLY CALLED AGAIN FOR AN INVESTIGATION (2002), AFTER I CONTACTED HIM TO SPEAK OUT ONCE MORE. HE WROTE TO THE CURRENT HEALTH OMBUDSMAN, SIR MICHAEL BUCKLEY AND HAS AGAIN BEEN TURNED DOWN.
WHAT WAS ALREADY KNOWN ABOUT HEPATITIS RISKS FROM UNSAFE DONOR SOURCING PRIOR TO THE PUBLICATION OF “THE GIFT RELATIONSHIP” IN 1971?
1966. Dr J Garrott Allen of the Stanford University School Of Medicine published and presented the following to the American Surgical Association.
“Blood from some groups among donor populations produces more cases of icteric hepatitis than blood from other groups. The incidence of icteric serum hepatitis in patients receiving single transfusions when the donors are of the prison-skid-row type, is ten times that of volunteer donors, family and friends. This alarming difference also obtains for multiple transfusions from prison donors, and this has been confirmed by others.”
“ The paid donor is often a cloistered resident of Skid-row where he and his colleagues enjoy frequently the practice of the communal use of unsterile needles and syringes for the self-administration of drugs…. There are also other unsanitary practises that prevail among this kind of population which favour repeated exposures to infectious hepatitis as well. Still another contributing factor, higher in this group than in the general population is that of alcoholism, which appears to make such individuals more susceptible to an initial infectious or serum hepatitis.”
“authorities have drawn attention to the fact that the purchase of blood attracts many alcoholics and other unfortunates who return to blood banks and who know they will be deprived of money if they answer to questions about jaundice, malaria, other infectious diseases and hypersensitivity. Narcotic takers are known to be frequent blood donors.”
“These paid donors have been variously described in many other papers as narcotics, dope addicts, liars, degenerates, unemployed derelicts, prison narcotic users, bums, the faceless, the undernourished and unwashed, junkies, hustlers and “ooze-for booze donors.” Many are said to give fictitious names and addresses (which make it difficult to trace cases of hepatitis, malaria and venereal disease): to sell their blood to different blood banks, and to traffic in black markets of social security cards, “rented” for 25 cents or so to serve as identity cards at blood banks.”
1966 PLASMAPHERESIS CONFERENCE among health risks to donors highlighted were the following.
The danger of iron-deficiency anaemia developing.
Local venous thrombosis at the site of repeated venipunctures.
Donors receiving back the wrong red cells.
Inadequate techniques for assessing haemoglobin levels: bacterial proliferation and contamination and other hazards to health particularly in the long run.
It was agreed that skid-row type of donors SHOULD NOT be used.
“One of the most important ethical implications is exploiting for its proteins a population which is lease able to donate them- the poorly nourished skid-row donors.”
“In many states, however, blood obtained from prisons is used for commercial purposes. The first plasmapheresis program started by Cutter Laboratories, a pharmaceutical firm of Berkeley, California began in a prison setting. In Georgia, in 1966-7, a local hospital seeking blood and a pharmaceutical firm were “clashing head-on” for the rights to obtain blood from prisoners in the Reidsville State Prison. By 1968 “bids” or tenders were being made in various areas by pharmaceutical firms operating plasmapheresesis methods and other commercial interests for monopoly rights over prison blood.
In terms of ethical principles, therefore, there is a fundamental difference in the official policies adopted in regard to prison donors in the United States and England.”
1966. Gastroenterology 50. “Hepatitis among Prison Inmate Plasmapheresis Donors in Three State Prisons” Ronald F. Johnson (Communicable Disease Center, Public Health Services, United States Department of Health, Education and Welfare, Atlanta, Ga.) showed the hepatitis risk of using prison plasma donors. The risk of hepatitis from prisoners was far higher than in the general population of America. The general population of America in turn carried a far higher hepatitis risk than the general population of the UK. (American prisons were a common source of donors for plasmapheresis to make plasma products for haemophiliacs. In the UK collection of blood from within a prison population was banned on the grounds of safety.)
1968. Journal American Medical Association Feb 1968 “Transfusion Hepatitis Arising From Addict Blood Donors” by Stephen N. Cohen MD, AND William J. Dougherty, MD, warns of hepatitis risk from using addict donors at U.S. blood banks.
1968. British Medical Journal 20th April “The Price of Blood” by Arie Zuckerman warns against using imported plasma from paid donors on safety grounds.
EVIDENCE FOLLOWING ON FROM THE PUBLICATION OF THE GIFT RELATIONSHIP IN 1971.
1972. Serum Hepatitis and The Paid Blood Donor by Martel J Dailey, MD Williamston, NC. This article there is a clear link between paid blood donors and a greatly increased risk of hepatitis.
1972. Journal American Medical Association 31ST July 1972 “Hepatitis and Clotting Factor Concentrates” Carol K. Kasper, MD, Shelley An Kipnes, University of California. Los Angeles. This article documents concerns over increased risk of hepatitis infection in U.S. haemophiliacs observed after haemophiliacs began using the new treatment, clotting factor concentrates. *(Please note this article was written BEFORE UK haemophiliacs began taking factor concentrates made from large plasma pools (20,000 donors), at this time UK haemophiliacs were using cryoprecipitate from a small number of donors up to 10 donors.)
1975 DR J GARROTT ALLEN LETTER PLUS 1975 WORLD IN ACTION DOCUMENTARY “Blood Money”
The “World In Action” documentary team including hepatitis expert Dr Arie Zuckerman visited around 10 plasmapheresis centres in run-down areas run by a plasma company Baxter/Hyland, and showed evidence of inappropriate donors and failing safety standards. Plasma treatments used by Newcastle haemophiliacs were traced to the source, the U. S. plasma collection centres. (Plasma from this company was used all over the UK as well as Newcastle). The documentary team interviewed American hepatitis experts, they state that “THE ESTIMATED HEPATITIS INFECTION RATE FROM IMPORTED AMERICAN FACTOR CONCENTRATES IS 100%”. THEY SHOWED A MAP OF THIRD WORLD COUNTRIES WHERE PLASMA WAS ALSO SOURCED.
ZUCKERMAN VISITED THE HYLAND FACILITY IN LOS ANGELES AND DESCRIBED IT AS “AN OFFENSE TO HUMAN DIGNITY”, WITH DONORS WHOM ANY BRITISH PHYSICIAN WOULD HAVE “REJECTED STRAIGHTAWAY.”
Peter Longstaff my partner (a severe haemophiliac) returned his treatment in protest after watching this documentary which featured Newcastle haemophiliacs in 1975 and was reassured by his Consultant Haematologist, Dr Peter Jones, that the Newcastle Haemophilia Centre was not using plasma from such sources. We obtained old treatment records for Peter back to mid 1970s and he WAS getting these products, as were others throughout the country and the safety concerns documented were only the tip of the iceberg. The huge level of risk from the imported products was never discussed with patients, haemophiliacs were unable to make an informed choice on taking this treatment nor were they given the chance to remain on the older safer treatment, cryoprecipitate.
(WHAT ABOUT PATIENTS INFORMED CONSENT AND THE HUMAN RIGHTS OF PATIENTS TO REFUSE TREATMENT IF THEY SO WISH?) Dr Jones the same consultant who reassured haemophiliacs in 1975 went on the record in a medical journal 5 years later his own concerns over the sourcing of plasma but PATIENTS WERE STILL NOT TOLD OF HEPATITIS RISKS AND THERE WAS STILL NO WITHDRAWAL OF IMPORTED TREATMENT.
Dr. Peter Jones gave evidence at the Lindsay Tribunal (Eire’s public inquiry into the contamination of blood products) last year stating that blood companies lied over safety of products! That may be the case but it is noted that doctors appear to be doing their own “damage limitation” now having ignored all the evidence with regard to imported plasma written in medical journals from the 1960s. Haematologists have consistently failed to support their patients in a call for a public inquiry. We also note the generous funding given to medical professionals, nurses, the national Haemophilia Society etc over the years from the U. S. plasma companies. This funding continues to-day!
Doctors, politicians, plasma companies etc, have continued the myth that “the benefits of the treatment outweighed the risks”. I argued against this in a letter to Government entitled, “The risks of the treatment outweighed the benefits.” (Contact for a copy). This argument “the benefits of the treatment outweighed the risks” was thrown out when used by plasma companies as a defence in litigation cases in the U. S. It was also thrown out in Canada where criminal charges against doctors, a plasma company and the Canadian Red Cross have been made in relation to contamination of haemophiliacs.
Dr Garrott Allen (American specialist in hepatitis viruses) writes to William Maycock, Head of our Blood Transfusion Service and advises Britain NOT to import U S plasma. (1975). IGNORED BY OUR GOVERNMENT! Statements from this letter was featured on the 1975 “World In Action” documentary entitled “Blood Money.
Dr Garrott Allen stated.
“Commercial blood banking perpetuates the high-risk rates for hepatitis we encounter with their products and it also tempts these same commercial firms to sell residual products.”
“It does not take much commercial blood in a mixed combination to bring up an astounding attack rate from one that is relatively unnoticed, this is the basis of my concern about Britain purchasing commercial blood products from our country.”
WORLD HEALTH ORGANISATION 1975
The activities of commercial firms obtaining blood or plasma from paid donors in developing countries, in order to produce blood derivatives, have given rise to serious health hazards and ethical problems. These were discussed by the Twenty-eighth World Health Assembly, which, after consideration of a report on the utilization and supply of human blood products, adopted resolution WHA28.72 recommending certain courses of action. In December WHO and the League Of Red Cross Societies jointly convened a consultation of experts to discuss the implementation of this resolution. Guidelines for the protection of health of recipients and donors were established, and preparations were made for international collaborative research on health hazards of plasmapheresis. In the field of blood transfusion, training remains the greatest need.
The Collection, Fractionation, Quality Control, And Uses Of Blood And Blood Products: Guidelines 1975.
“Donor populations showing a prevalence of acute or chronic hepatitis higher than that found in the general population should be avoided for collection both of single donor products (whole blood and its components and of plasma for pooling for the manufacture of plasma fractions known to be capable of transmitting hepatitis, such as clotting factor concentrates.)
Countries with a low incidence of hepatitis should NOT use whole blood or blood products obtained from source material collected from an area, in which there is a high incidence of hepatitis.”
*PLEASE NOTE THIS WAS THE SITUATION WITH REGARD TO BRITAIN IMPORTING FROM THE U.S. IN 1973. THE UK HAD A MUCH LOWER INCIDENCE OF HEPATITIS THAN THE U.S.
WHY DID THE GOVERNMENT TAKE SUCH RISKS WITH THE LIVES OF HAEMOPHILIACS BY USING IMPORTED PLASMA?
WHY DID BRITAIN START IMPORTING TREATMENT FROM THE U.S. USING COMPANIES THAT SOURCED PLASMA FROM SKID-ROW AND PRISONS SUCH AS LOUISIANA STATE PENITENTIARY, ARIZONA AND ARKANSAS PRISONS ETC AND EXPLOITED THE SICK AND POOR FROM THIRD WORD COUNTRIES? THIS WAS WELL DOCUMENTED AND DEBATED IN MEDICAL JOURNALS AT THE TIME.
EVIDENCE OF HEPATITIS RISK RESEARCH ON HEPATITIS B AND NANB FROM 1970S ONWARDS.
First evidence of non – A, non –B hepatitis (NANB).
PRIOR TO 1973 cryoprecipitate used to treat haemophiliacs, made from small numbers (pools of 10 donors, these donors are volunteer, unpaid, local donors.) Incidence of hepatitis in general population very low according to National Blood Transfusion Service.
Factor VIII licensed for import. (HOW COULD THIS TREATMENT HAVE BEEN LICENSED ON SAFETY GROUNDS?) Concerns raised in the UK (“Times” and medical journals) over post transfusion hepatitis non-A, non –B, and infection risk in U. S. patients.
Times Nov 12th 1974. “The existence of at least one other strain has been apparent during the past six or seven years because research has shown that a large number of patients, particularly those infected from transfusions or injection, were not carrying the hepatitis-A or B strains. In the United States up to 90% of transfusion-associated illness is caused by this third non-A, non-B agent”.
(Please note at that time the UK had a very low incidence of hepatitis viruses in our general population compared to the U. S. This fact DID NOT stop the Government exposing haemophiliacs to a far greater risk of hepatitis viruses by importing U.S. plasma collected FROM HIGH-RISK SOURCES.)
Outbreaks of hepatitis directly linked to imported factor concentrates. (Studies by Dr Craske on haemophiliacs published in British medical journals in 1975 and 1978.) Warning bells did sound with some doctors but importation continued!
Not long after this UK Haemophilia Centre Directors issue guidelines recommending children are now treat with the older safer treatment-cryoprecipitate because of risk of viral contamination, adults not given this choice.
WHY WOULD HAEMATOLOGISTS ISSUE SUCH GUIDELINES FOR CHILDREN IF THE FACTOR CONCENTRATES WERE SAFE?
WHAT ABOUT SAFETY FOR ADULTS?
Professor Preston et al Sheffield start their 8 year study on haemophiliacs looking at liver disease. Government ask the UK Haemophilia Directors Association to monitor levels of hepatitis B, and non-A, non-B and keep information on “suspect” batch numbers. (Patients not warned of this). The Government funded a 3 year study on hepatitis in haemophilia patients. It was noted that the U. S. products carried the highest risk of hepatitis viruses and specific companies such as Baxter /Hyland were named.
BOOK –NON-A, NON-B HEPATITIS BY R J GERETY. PUB. 1981. Chapters looked at donor type and source plasma to level of infectivity with hepatitis viruses e.g. source plasma from prisons hepatitis infection rate could up to 70 times higher then general population. Specific chapters on haemophiliacs. Looks at symptoms for acute and chronic NANB hepatitis, levels of liver disease, cirhhosis etc.
Warnings come from the U. S. about haemophiliacs dying from immune problems, this escalates and further concerns are raised over plasma safety.
The consensus of opinion from experts at the Centre For Disease Control, Atlanta was that AIDS was blood borne. (Dr. Doug Francis, CDC.) U. S. plasma companies warned of this and to stop using high-risk donors, of particular concern with regard to transfusion risk, these include prison donors and donors from the gay community. Many warnings ignored by the plasma companies.
1983 Dr Galbraith of the Public Health Laboratory Service (PHLS) writes to Government to call for an urgent withdrawal of all U. S. blood products manufactured in the U. S. after 1978 because of the risk of AIDS in blood products. Dr Galbraith lays out his reasons why there should be a withdrawal stating that he has contacted both the U. S. and Madrid where there are cases of AIDS symptomatic haemophiliacs and the common factor is the U. S. factor concentrates.
First reports of AIDS in a UK haemophiliac, (Cardiff). PHLS complains that this and a further case were not reported by haematologists to the PHLS and that they only found out through the *“Mail on Sunday”.
*Pioneering journalist Susan Douglas writes strong article about risk to haemophiliacs from new virus believed to be blood borne –AIDS. Haematologist, Dr Peter Jones takes action with Press Association complaining about article. Incredibly he wins on grounds that article is alarmist and AIDS is not blood borne. This has the effect of shutting up some of the press and for a while this virus is not taken seriously by Government, medical establishment etc.
Some doctors call for a ban on imported American plasma -IGNORED. In fact incredibly our national Haemophilia Society goes to the Health Department and asks for a guarantee that imported products continue!!!! (Society minutes 1984.)
Mail On Sunday fires back with article about the medical profession with a direct attack on (Dr Jones) describing the situation with the medical establishment as a “conspiracy of silence”. Haemophiliacs are not at that stage advised of any HIV risk to themselves but told to keep on taking U. S. plasma and to ignore “alarmist” press articles! First HIV deaths occur in UK haemophiliacs.
Haemophiliacs tested for HIV virus, (often without their knowledge or permission). 1263 eventually test positive nationally. According to staff at Newcastle Haemophilia Centre 95 haemophiliacs out of 105 tested come up positive for HIV. (78 NOW DEAD, ONE OF HIGHEST INFECTION AND DEATH RATES IN UK.)
Also the year heat-treatment is introduced here, some hospitals INCLUDING Newcastle, RVI, insist old untreated products are used up first further exposing haemophiliacs to viral contamination. Some companies heat-treat at wrong temperature so products are unsafe.
Professor Preston publishes his 8 year study on haemophiliacs in the “Lancet” called “Liver Disease In Haemophiliacs, An underestimated Problem.” The study concludes that much of the liver disease is probably as a result of haemophiliacs being infected with non-A, non- B (NANB) hepatitis. Diagnosis of NANB hepatitis by now quite common. There is a process of elimination, testing for hepatitis A and B excluding these viruses and looking at raised liver function tests etc which is documented in medical journals. Preston’s study also predicts more problems in the future with regard to liver disease in haemophiliacs and the hope of a safe synthetic alternative treatment within a few years. At around this time we now know from patient’s medical records that some UK haemophiliacs were being given a diagnosis of being infected with NANB hepatitis although this was never discussed with them at that time.
Professor Preston has recently given evidence on hepatitis to the Lindsay Tribunal (Eire)
MANY PAPERS PUBLISHED ON NANB HEPATITIS AND EFFECTS OF INFECTION PUBLISHED ON A REGULAR BASIS FROM THE 1970S TO PRESENT DAY DOCUMENTING HEPATITIS NANB (HEP C) AS A DEADLY VIRUS.
IN THE HIV LITIGATION MANY OF THESE PAPERS ON HEPATITIS WERE COLLECTED, HEPATITIS GENERALLY CONSIDERED A SERIOUS PROBLEM FROM THE END OF THE 1970S. THE BASIS OF THE HIV LITIGATION WAS ALLEGED NEGLIGENCE WITH REGARD TO HEPATITIS B, FAILING TO TAKE SAFETY PRECAUTIONS WHICH WOULD HAVE MINIMISED RISK AND ALSO WOULD HAVE DRASTICALLY REDUCED EXPOSURE TO AIDS AND HEPATITIS C. IF PRECAUTIONS HAD BEEN TAKEN WITH REGARD TO THE DANGERS OF HEPATITIS B AND BLOOD NOT IMPORTED (1973) AS ADVISED BY AMERICAN SPECIALISTS AS WELL AS UK SPECIALISTS MUCH OF THE VIRAL INFECTION WITH HIV AND HEPATITIS C WOULD HAVE BEEN PREVENTED!
Stephen Longstaff, a haemophiliac and brother of my partner Peter Longstaff dies of AIDS.
Hepatitis NANB becomes officially known as hepatitis C after virus is isolated.
TESTING FOR HCV
Government won’t use first generation hepatitis C test in 1989 as they say too many false positives. Other European countries erred on the side of caution and tested whole blood thereby saving many patients from hepatitis C infection. Many haemophiliacs secretly tested with first generation test from 1989 and then again with a second generation test in 1991/1992 but many not told of results until 1994 or much later. This testing was against GMC guidelines and a matter, which doctors may have to explain in court. We now know from medical records that testing without patient’s permission occurred all over the UK.
Government try to claim PUBLIC INTEREST IMMUNITY, this is overturned by solicitors who get permission to view Government blood files. Suddenly after years of fighting, haemophiliacs hear that Government have announced an ex-gratia payment but accepts no liability. The solicitors agree and the files are sealed for 30 years. Government want to means test settlement but solicitors disagree. Government says that if all haemophiliacs sign a “hepatitis undertaking” known by haemophiliacs as the “waiver” they will not means test the settlement.
HIV settlement-haemophiliacs forced to sign hepatitis waiver that they will take no further action for HIV and hepatitis viruses or no-one will receive recompense. Haemophiliacs can make informed choice about hepatitis A and B as they have been tested. They are advised by solicitors including Tony Mallen of Deas, Mallen, Souter, that hepatitis C is “no big deal”, “nothing to worry about” and “less of a problem than hepatitis A and B” (contrary to medical and research papers within the HIV litigation documents which were NOT shown to haemophiliacs at the time but which I recently accessed.) All haemophiliacs (bar those in Scotland we now know) signed the waiver. Solicitors DID NOT advice that haemophiliacs consider having a test for hepatitis C which was available, or advised NOT to sign the waiver if they did not have this test. Scottish lawyers take out waiver and haemophiliacs in Scotland are NOT means-tested! The problems of HCV were known about by Government (department of Health) long before 1991, haemophiliacs were NOT informed.
I have a letter from John Horam dated 12th March 1996 which is a reply via my MP to my question “what did the Government know about hepatitis C at the time haemophiliacs signed the waiver in 1991”. John Horam, (former Health Minister) states
“ALTHOUGH IT IS CORRECT THAT MORE INFORMATION ON THE NATURAL HISTORY OF HEPATITIS C IS BECOMING AVAILABLE, AT THE TIME OF THE HIV HAEMOPHILIA SETTLEMENT IT WAS KNOWN THAT IN SOME CASES NON –A, NON –B HEPATITIS, AS HEPATITIS C WAS THEN KNOWN COULD LEAD TO SERIOUS LIVER DISEASE AND SOME DEATHS HAD ALREADY OCCURRED IN UK HAEMOPHILIA PATIENTS.”
WHY WERE HAEMOPHILIACS NOT TOLD THIS?
WHY WERE THESE DEATHS KEPT QUIET?
WHY HAVE FAMILIES FOUND THAT THEY HAVE HAD PROBLEMS GETTING HEPATITIS C PUT ON DEATH CERTIFICATES WHEN THEIR LOVED ONE HAVE DIED AS A RESULT OF HEPATITIS C INFECTION?
AT NO TIME were haemophiliacs informed of high NANB hepatitis risk related to treatment. Haemophiliacs were in fact misinformed in 1991 and told by their solicitors that NANB hepatitis was “nothing to worry about” and “less of a problem than A or B.” Complaints are now going to the OSS with regard to advice or lack of advice to litigants with regard to hepatitis C when signing the hepatitis waiver in the HIV litigation.
House Of Lords ruling 1984 states that a patient has the right to know of substantial risks involved with taking treatments,THIS NEVER HAPPENED. WHY DID MEDICAL PROFESSIONALS OFTEN FAIL TO DISCUSS THE DANGERS ASSOCIATED TAKING FACTOR CONCENTRATES AND THE HEPATITIS C VIRUS WITH THEIR PATIENTS?
The national Haemophilia Society discusses hepatitis C at a trustees meeting. (Minutes available). The Society had asked two trustees to look at hepatitis C and seek expert advice on hepatitis C. Incredibly trustees report back that hepatitis C isn’t a big issue for haemophiliacs and these trustees step down from their fact-finding task. Individual haemophiliacs writing to the Haemophilia Society for advice on hepatitis C are advised that it isn’t a problem and that they are the only ones worrying!
Many haemophiliacs are finally told that they have hepatitis C virus. 99% of haemophiliacs infected with HIV also have hepatitis C. There are around 2,800 haemophiliacs/persons with bleeding disorders in the UK with hepatitis C. My partner is officially told that he has been infected with the hepatitis C virus in May 1994. We later find out from accessing medical records that he had been tested for hepatitis C without his permission years earlier and he was not told the result of that test at the time. As part of GMC guidelines he should have been offered pre and post -test counselling. *(It would have been very east to test haemophiliacs for hepatitis C without their knowledge as they routinely give blood for blood clotting levels to be monitored.)
I start asking questions and seek legal advice with regard to litigation on behalf of my partner returning to one of the original solicitors who dealt with the HIV litigation- Mr Anthony Mallen, (Newcastle). We are told nothing can be done as my partner has signed a hepatitis waiver. It is then that the significance of the hepatitis waiver becomes apparent. Mallen refuses to take on the case and we find another solicitor Mr Graham Ross, of J Keith Park, Liverpool) another of the original HIV solicitors who does take on the case.
I start campaigning on blood safety and contamination issues including hepatitis C. I collect evidence and raise my concerns over the specific treatment problems of co-infection HIV/hepatitis C with my MP, Mr Jim Cousins, Newcastle. I urge the Haemophilia Society to start campaigning on hepatitis C. They are still saying hepatitis C isn’t an issue for their members even though we know haemophiliacs have died and are dying from hepatitis C.
Haemophilia Society finally launches it’s hepatitis C campaign asking for a recompense package but decides to exclude those haemophiliacs who are co-infected with both HIV and hepatitis C. This divides the haemophilia community and I protest in writing over a 5 year period before pressure finally forces them to include ALL haemophiliacs infected with hepatitis C including the co-infected. I protested at that time that the Society was using the death figures of the co-infected as the majority of deaths from hepatitis C are in the co-infected group (HIV/HCV) yet not campaigning on behalf of co-infected as well as mono-infected (hepatitis C).
Hepatitis C is now taking over from HIV as the biggest killer of haemophiliacs in Europe and the U S. (Please note that following on from my early attempts to work with the Haemophilia Society (1994) four years later I attempt to join a peaceful protest at Westminster in (1998) but I am told by the Chief Executive of the Haemophilia Society that I am not welcome because my partner also has HIV as well as HCV and they are NOT campaigning for people like him and “it would be embarrassing if we had to remove you”. I stand my ground and am escorted into Westminster by my MP Jim Cousins who has helped me since 1994. )
I fight for my partner to get legal aid to fight for justice over hepatitis C infection showing our evidence and Pete eventually becomes a legal test case.
Problems of co-infection finally highlighted in articles such as Professor Lee’s “HEPATITIS C AND HAEMOPHILIA, Co-infection with HIV is common and will demand great resources.” Published in the BMJ vol 310 24th June 1995.
I request recombinant for north-east haemophiliacs in writing in 1995 because of concerns over the possibility of v CJD being transmitted in blood products, we are turned down in writing by the RVI Trust in March 1996. Pete has his first of 12 exposures to v CJD in November 1996.
British plasma banned over CJD risk.
PRESS 1998 ONWARDS
We make moves to increase campaigning, to educate the press and have information on haemophilia issues published. Regional newspapers the Newcastle “Journal” and “Northern Echo” take up a number of issues including our legal fight, our fight for synthetic treatment, recombinant for all, concerns over the possibility of v CJD in blood products etc. We also receive support from “Private Eye, the Guardian and Meridian TV (Holly Lewis) makes a documentary entitled “Blood Brothers” highlighting the issues.
My partner, Mr Peter Longstaff public ally leads the way for a treatment strike refusing all human derived plasma products on the grounds of safety and the fact that companies using paid blood donors are promoting an immoral trade. W e win our fight in theory for recombinant with the local health authority on the above grounds putting forward a detailed well- reasoned argument to provide recombinant for all, when suddenly there is a world shortage of recombinant which puts this on hold.
Peter refuses treatment over continued safety concerns and because of the moral issues over using third world countries for plasmapheresis. (The case highlighted by Dr Gao (China) who spoke out and revealed that the same collecting equipment is being used to collect plasma from many donors spreading AIDs, some of this blood goes on to the world market. Dr Gao is awarded Jonathan Mann global health award to be presented in America but she is not allowed to leave China to collect award.
Peter Longstaff chooses to use old fashioned treatment cryoprecipitate from small local pools of volunteer donors to explode the myth that there was never a safer alternative to plasma concentrates for severe haemophiliacs. Peter had used cryoprecipitate before concentrates were introduced and found that they worked as a treatment. However he states his continued wish to be given recombinant as cryoprecipitate cannot be heat-treated, although morally he believes this is a better treatment as it comes from a carefully screened group of local volunteer plasma donors and does not harm or exploit donors.
We also fight for health authorities to provide funding for interferon/ribavirin to treat haemophiliacs with hepatitis C. We fight for haemophiliacs infected with hepatitis C through NHS treatment to be exempt from prescription charges for interferon/ribavirin.
We find out that Mr Ross (solicitor) has let my partner’ case go out of time without doing the work as promised and informing us of this time factor. We complain in writing to the Office Supervision Of Solicitors (OSS) who agree that our complaint is valid. They advise we can take a case against Ross or try to find another solicitor to continue the hepatitis C case as taking a case against Ross could tie up our files for a long time. We then go back to J Keith Park, the firm where Mr Ross originally worked and Mr Denis Whalley agrees to take on the case and it continues after the time factor is extended because of exceptional circumstances. We are told by Mr Whalley that Mr Ross was pressurised to leave this firm, as the company was not happy with his work practice.
Haemophiliacs are told that they have now been exposed to the theoretical risk of v CJD after they receive blood from a donor(s) who have died from variant CJD. Haemophiliacs are only told that they have been exposed after I leak letters from Government and BPL advising that haemophiliacs NOT be told.
We fight for guidelines on treating haemophiliacs exposed to variant CJD as some haemophiliacs are now being refused treatment due to concerns over re-using surgical equipment. (Heat-treatment does not kill prions.)
Haemophilia Action UK meet with Lord Hunt for a 90 minute discussion and presentation of our campaign aims.
Weber Shandwick a PR company recently employed by the Haemophilia Society hold a session at the AGM to launch the “new” HCV campaign aims. There is a strong protest from infected haemophiliacs who feel that their opinions are being ignored. The campaign drops the call for a lumpsum pay-out focusing on a “hardship fund”, there is an outcry from the widows. We write strong letters of protest to the Chairman of the Haemophilia Society expressing concerns over a Society who as well as receiving Government funds gets regular funding from the same companies that contaminated haemophiliacs. (In the U. S. their society, the National Hemophilia Federation (NHF) was named as the fifth defendant along with the plasma companies as it could not be seen to give independent advice on product safety whist receiving funding from the plasma companies.)
We receive a reply from Lord Hunt on 25th July once again turning down our demands for justice although recognising the need for up to date CJD guidelines.
AUGUST 3RD “Face The Facts” BBC Radio 4 broadcast.
CANADA -public inquiry, recompense, recombinant, criminal investigation. Red Cross found legally negligent over donor sourcing. Criminal charges pending for plasma brokers and identified others.
EIRE, public inquiry- Lindsay Tribunal, ongoing. English doctors giving evidence. Full recompense package awarded. Recombinant prescribed to all haemophiliacs including those over 16.
2002 Haemophilia Action UK greatly increases campaign work which includes numerous international, national and local press, radio and TV articles and participation in an international documentary series on the history of blood use to be screened on Channel 4 entitled “Red Gold” based on the 1998 science book “Blood. An Epic History Of Medicine And Commerce by Douglas Starr.
Haemophilia Action UK in conjunction with the Manor House Group attends a meeting with Health Minister, Yvette Cooper to discuss our campaign objectives and to call once again for justice. The Department of Health fail to send us minutes of meeting which is highly controversial but we have minuted this meeting for our own records. (All the issues we raise are ignored.)
Our regular international contact with U. S. haemophilia campaigners proves fruitful. They contact Haemophilia Action UK and offer help with U. S. lawyer contacts in recognition of our international campaign efforts. I set up contact with the firm of Leiff Cabraser and Bernstein, California. through our then solicitor Mr Whalley and offer to open this up to other UK haemophiliacs in addition to my partner. We meet U.S. lawyers who fly over on two separate occasions to assist UK haemophiliacs bring future cases against the U. S. plasma companies. I set up meetings in Scotland and Eire for U.S. solicitors with a future meeting for Northern Ireland. Other haemophiliacs from Europe also join the litigation. This is on a no-win, no fee basis through the U. S. solicitors and does not involve legal aid from this country.
Haemophilia Action UK along with members of the Manor House Group ask police to investigate the contamination of haemophiliacs and the complaint is referred to Wales Police who investigate cases of national importance.
CONFIDENTIAL. Peter and I decide to sack our solicitor Mr Whalley with regard to a matter of serious concern over his unprofessional behaviour, which is now being investigated. We replace Mr Whalley with another solicitor Mr Patrick Rafferty, (McKeag, Newcastle) and apply for further legal aid to take a treatment case forward and explore issue of testing without permission.
Canadian Police bring criminal charges on behalf of haemophiliacs against the Canadian Red Cross, four doctors and a U.S. plasma company, Armour, (whose products were used extensively in the U.K
EIRE. Lindsay Tribunal Report (investigation into infected haemophiliacs) considered a “whitewash”. Eire wants investigation into U. S. plasma companies.
ITALY brings criminal charges against health officials, plasma companies.
SCOTLAND, Scottish Executive Report into contaminated haemophiliacs considered a “whitewash”.
2003. We launch campaign to stop the international trade of using blood from paid donors in line with new European Commission Proposals.
We highlight the issue of testing haemophiliacs for hepatitis C WITHOUT PERMISSION through the press, with complaints to the General Medical Council and call for an urgent public inquiry.
2003 MAIN OBJECTIVES- HAEMOPHILIA ACTION UK
1. RECOMBINANT SAFE TREATMENT FOR ALL HAEMOPHILIACS
2. A FULL AND OPEN PUBLIC INQUIRY- THE TRUTH AND AN APOLOGY FOR MISTAKES MADE
3. RECOMPENSE ON A PARITY WITH EIRE
4. JUSTICE THROUGH THE UK LEGAL SYSTEM PLUS EXPLORE HUMAN RIGHTS ACT. (EUROPE IF WE ARE UNABLE TO GET JUSTICE THROUGH THE USUAL ROUTE.
5. U. S. LITIGATION UK HAEMOPHILIACS V U.S PLASMA COMPANIES.
6. HAEMOPHILIA ACTION UK CALLS FOR A WORLD-WIDE BAN ON THE USE OF PAID DONORS AND RESULTING PRODUCTS.
NOTE: The solicitor Mr Whalley was later struck off and Grayson’s case upheld by the Office of Supervision of Solicitors (OSS)
Blood scandal campaigners are ‘right to be angry’ says top barrister warning wrongdoing medics should face criminal courts (Newcastle Chronicle, 3rd February, 2023) written by Sam Volpe
Sam Stein KC hit out at the Government and doctors who treated patients without their consent in a moving closing address to the Infected Blood Inquiry.
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”