Professor Mike Makris makes 5 key points on Twitter supporting compensation for haemophiliac “natural clearers” (Image via Twitter)
This week has been one of mixed emotions for haemophiliacs given contaminated blood and their affected partners that have fought long and hard over decades for both a public inquiry and proper compensation for all.
Haemophiliacs were born with an inherited bleeding disorder. They became infected with hepatitis C and HIV (in addition to hepatitis B) during the 1970s and 80s through factor concentrate treatment given to help their blood clot. It was often imported from the US and sourced from “high -risk donors” such as prisoners, sex workers and drug addicts.
The Infected Blood Inquiry (tragically, years too late for many) was set up by government in 2018 to investigate and examine the circumstances surrounding infection and is chaired by Sir Brian Langstaff.
On the issue of compensation, after inviting submissions from interested parties, and reading the report of Sir Robert Francis (brought in by government to write up a Compensation Framework Study), Langstaff accepted the recommendation of Francis regarding the need for interim payments to be considered now to alleviate suffering and further suffering. Langstaff then took the key step of recommending that an interim compensation payment of no less than £100,000 should be paid to all the infected people and all the bereaved partners currently registered on the (government) financial schemes and those who register now and before the inception of any future schemes. Watch Sir Brian speak about this on the link below,
The government have now accepted this initial recommendation of Sir Brian Langstaff in full, releasing a press statement on the 17th August 2022 as follows,
Infected Blood victims to receive £100,000 interim compensation payment
(The interim compensation payments will also be made to persons infected via whole blood transfusion though this is an entirely separate case to haemophiliacs.)
For those in the haemophilia community who will receive this interim compensation payment by the end of October, the infected, and affected bereaved partners, there is a sense of relief and gratitude to “Sir Brian” coupled with deep sadness as those left alive struggle with ongoing ill health and partners continue to mourn their loved ones.
In addition, there are those who have yet to receive any interim payment including parents who lost children and children who lost parents who have expressed their pain and disappointment through the media. The Chair has highlighted that work is very much ongoing and urged patience, stating, “this is not the end of the Inquiry’s work and the question of compensation and its scope is not resolved in this short report on interim payments, I repeat, the interim report concerns only whether I should recommend interim payments.” Langstaff’s final report is expected to be published in 2023 with full and final recommendations.
One ray of hope has emerged on social media however for those haemophiliacs where it may be more difficult to seek a claim for compensation as they have naturally cleared the hepatitis C virus and are known as “natural clearers”. Professor Michael Makris, a professor of haemostasis and thrombosis at the University of Sheffield, took to Twitter to highlight his 5 important points for supporting the inclusion of these natural clearers for compensation payments as follows:-
I hope the Infected Blood Inquiry ( @bloodinquiry) will not forget the 15% of persons with #haemophilia that were infected with hepatitis C and who cleared the virus spontaneously. #hemophilia 1/5
Persons infected with hepatitis at a young age were more likely to clear the virus spontaneously. To qualify for compensation you need to show chonic infection ie for more than 6 months. This can only be done by submitting an application with abnormal liver function tests. 2/5
Abnormal liver function tests (ALT or AST) are blood tests. Doctors did not do many of these pre-1991 and even in cases where they are done, the medical notes have been destroyed or are missing. 3/5
Many persons with #haemophilia who cleared the virus spontaneously and who can not get compensation (according to the current system) have suffered significantly psychologically as a result of knowing they have been infected with hepatitis. 4/5
The @bloodinquiry also needs to address the issue of this sizeable group of individuals. These patients may not have high visibility at the IBI, but the impact of hepatitis on their lives is very real. 5/5
END
In addition to the points made by Prof Makris, haemophiliacs that are natural clearers may have been infected with multiple hepatitis viruses such as B, D, G and some could have been re-infected with hepatitis viruses and infected with HIV. Early drug treatment regimes for HIV may have also added additional stress to the liver. Even where haemophiliacs have cleared hepatitis C there may still be residual damage and weakness of this organ due to these multiple factors which affect haemophiliacs.
As a former nursing sister in psychiatry that nursed many patients with hepatitis viruses and HIV/AIDS, Grayson states that the long term psychological damage of having being infected and the distressing way haemophiliacs learnt of their infection(s) cannot be underestimated. Haemophilia runs in families so there is also the worry of watching other infected siblings struggle with hepatitis C which may make it more difficult to accept that a natural clearer has actually cleared the virus, the fears may remain long after the virus has gone. It is one thing to be told this, another to actually believe it.
Sir Brian Langstaff has demonstrated that he is a person who genuinely listens to all concerned and shows carefully measured thought and much needed empathy so there is optimism that he will consider further additional points made to him. When the Inquiry does conclude and if there are to be individual assessments of those infected and affected then these points made by Professor Makris should be examined as they make a compelling arguement for including natural clearers in future compensation schemes and then determine at what level they should be compensated.
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”
Linda Miller saying goodbye to her brother Bud Tant, a US prison plasma donor, as he lay dying from liver failure as a result of his infection with hepatitis C (Image shared by Miller)
Haemophiliacs were infected with HIV and hepatitis viruses during the 1970s and 80s through their factor concentrate treatment for an inherited bleeding disorder. They discovered years later that much of this treatment was imported from the US and made from the plasma of “high-risk” donors such as prisoners, sex workers and men who had sex (often unprotected) with men. Two of the biggest myths regarding what is now known as the Contaminated Blood scandal are 1) That haemophilia campaigners presented no evidence of safety violations and human rights abuses and 2) That most of the key evidence was only just “discovered” in 2017 by new campaigners… both being false statements.
Regarding the first point, damning documents were repeatedly sent by infected haemophiliacs and affected partners to government and indeed presented in face to face meetings with ministers. Government had a tendency not to minute these meetings so campaigners quickly learnt to write their own minutes sending copies to those they met recording their interactions. On the second point, information regarding who knew what and when is frequently misrepresented in the media today by unscrupulous journalists that either don’t do their checks properly when interviewing subjects and believe all that they say unchecked or are working to their own personal agenda and bias.
In the 1990s/early 2000s this author Carol Grayson and her late husband Peter Longstaff were in regular contact with American activist, Linda Tant Miller, the sister of an Arkansas State Penitentiary plasma donor, Bud Tant, who died from hepatitis C. Miller ran a damning website detailing prison “blood cows” looking at the alleged safety violations in collecting plasma and abuse of incarcerated donors. The couple were also the first UK campaigners to have contact with documentary maker Kelly Duda who was making a film on the plasma programme which came to be known as Factor 8: The Arkansas Prison Blood Scandal.
The following piece on Bud Tant and Arkansas prison was published as part of a wider story by the awarded Newcastle Journal “Bad Blood” campaign set up in 2000 jointly by journalist Louella Houldcroft and Grayson and Longstaff, their goal being to achieve a public inquiry and proper compensation for those infected and affected. They set about introducing Houldcroft to Miller by phone and email and a story went out on August 7th, 2000, having first been checked over by the paper’s lawyers as it was a controversial topic and accuracy was important. This is the scanned article as the old Journal website was changed and the online links disappeared. Grayson maintained hard copies and due to interest generated as a result of the Infected Blood Inquiry, the articles may soon be resurrected and once again made easy to view. The Chronicle, a sister paper in Newcastle also ran numerous article with the couple.
Newcastle Journal “Bad Blood” campaign article (August 7th, 2000) written by Louella Houldcroft in collaboration with Grayson, Longstaff and MillerPart of the same article on Bud Tant and Arkansas Prison
On 24th November 2000, Grayson received an email from Miller prompted by a newspaper article which reported that Irish contaminated blood victims might “sue” for their infections and go to court. She wrote,
This article made me think of something — didn’t you say that you have evidence, (a package or something like that) which confirms that Pete received Cummins Unit plasma product? Well, I PROMISE YOU I can get together enough testimony that you would be successful in suing those INDIVIDUALS of the Arkansas Department of Correction who were responsible for the way the plasma program was run. I can even provide you a former Compliance Officer of the ADC who told me and a friend of mine who’s making a documentary about the atrocity that a civilian employee of the plasma center came to her office and told them about the re-use of needles and tubing and the falsification of test results. I can also put an attorney in contact with a respiratory therapist who works at the biggest hospital in Pine Bluff who worked at the plasma center as a college student – you would have to subpoenea him because he’s really scared due to the fact that he’s had death threats if he talks – but he knows a lot about it. That’s in addition to all the former donors and plasma center workers who are still in the prison who are willing and even anxious to testify about what went on there. One of those inmates’ job was to re-sharpen used needles with sandpaper and the other was the one who would fix the plasma center freezers after they had been broken for days at a time. Someone else I know has a document signed by one of them which PROVES CRIMINAL ACTS I can’t tell you about right now, but this document alone would enable you to prevail.
At that time, Grayson and her campaign colleague, Colette Wintle were in regular contact with Lord Alf Morris, then President of the UK Haemophilia Society who would ring them for briefings on the latest campaign and news updates so that he could discuss and refer to them during parliamentary debates. Morris was deeply disturbed by what he was learning about US prison plasma and was doing all he could to secure both a public inquiry and proper compensation for those infected and affected that had received these products.
On the 22nd March 2001 she again emailed writing,
My very dear friends:
I am so excited about what you are accomplishing! YES, I will write a letter to Mr. Blair and tell him exactly how they harvested that blood and how it was handled. I will start working on it tonight and get it to you as soon as I can. I don’t see HOW they can fail to be shocked and appalled at INTENTIONAL MURDER committed by a US state agency! I mean, it’s not like there was even a CHANCE the plasma wouldn’t sicken and kill people, and the people who harvested it were medical people. They knew exactly what they were doing.
We in America have faced an added blockade of the atrocity due to the fact of Clinton being President, but now that he’s out of office we are barrelling full speed ahead. Kelly Duda’s film is almost complete. He thought he had it done, but then decided it was a little too long, so he’s doing some last minute editing to shorten it for most markets. He has requests for it from HBO and several networks. 48 Hours, which is a popular American news program has also expressed an interest in doing the story and Kelly is working with them, too. As soon as the program airs I plan to begin a push to get folks to contact the FBI and Justice Department and demand investigation into this atrocity and prosecution of the guilty parties. I sure wish some group from another country could come here and sue the Arkansas, Texas and Federal governments for this, but the problem is finding a law firm with “deep enough pockets” to carry the suit. The Canadians are still seeking a US firm which is willing to take on this case. I believe that when the public pressure grows intense enough law firms will be vying with one another to prosecute this case, but until we can get the message out to the public we’re not getting any action.
The thing is that the US press has a blackout on this story. We think that the fact that virtually the entire world will be able to sue the US is the major factor in this. So we’re fighting an uphill battle. Most of what we are able to inform folks about takes place online. We’re not going to give up, though. We’ll NEVER give up!! We know we WILL prevail because we KNOW God is on the side of righteousness!!
I pray you’re successful in getting them to provide recombinant treatment to all hemophiliacs! It’s absolutely INSANE that they haven’t made the switch as soon as it became available. Based on what I’ve seen through this work, I would BET that the whole reason they haven’t is based on protecting the blood brokers from financial loss! It’s a tragedy of monumental proportions that people are more concerned with financial gain than with the lives of others.
Well, let me get off here and go get some things done and then start the letter to Mr. Blair. Thanks so much for letting me know about this. I’ll get the letter to you asap.
God bless and keep you both!
Hugs.
Linda
“To be silent in the face of injustice is to be an accomplice to evil. I will not be silent.” Lori Berenson – January, 2000
Miller then took a break from campaigning due to health issues and a stay in hospital. A flow of further emails followed and then the promised letter to Tony Blair arrived on 25th March 2001. Miller stated,
Hello, dear people I am attaching a scanned, signed copy of the letter to Mr. Blair in which I made the type face larger and added a line requesting a reply, in case you want to print it and use it for distribution and delivery to Mr. Blair.
After giving an update on her health, she wrote,
I believe that once the story gets told to Americans they will be as outraged as we are. It’s just a matter of REACHING THEM and thus far we have been unable to get any mainstream news source to mention it at all. My father and I began trying back in 1997. We wrote to EVERY major news source and investigative reporter we could find and never even received the courtesy of a reply to our letters from anyone. We were just astounded. Things got a little better after I built the web site – Kelly, the documentary film maker and the producer from 48 Hours found me via the site, but even after all this time we’re still at the point of getting ready to get the story out. I find it so hard to believe. I really believed what they taught me in school – that we have a free and autonomous press that tells the American people the truth, no matter how grim. What a sad truth I’ve had to face in that it’s not true.
Kelly tells me that the reason the US media don’t want to report it is because when it’s globally known – when just ONE country wins a civil lawsuit against us or the perpetrators are brought to justice – virtually the entire world will be able to sue Arkansas and also the United States due to the culpability of the Food and Drug Administration which kept re-certifying the Cummins Plasma Center despite the horrendous conditions. This would DEFINITELY bankrupt Arkansas (one of the poorest of the states), and would do grave financial damage to the US economy. Well, I don’t care. I’m so outraged that even though the financial devastation of the federal government would adversely impact my own life I really don’t care. This is THE worst atrocity in the history of humanity, and because I know about it I am compelled to do all I can to set it right. I believe that had I lived in Europe during the days of WWII I would have hidden and assisted people destined for the extermination camps, and I see this as being on the same moral level. I’m willing to do and suffer whatever it takes to see to it that the monsters who have unleashed suffering and death on innocent people don’t get away with it!
The problem my country has with me right now is that I BELIEVED all the propaganda I was fed about how moral, upright, just and trustworthy my country was and how we as individual Americans should embody the high principles of America. So I always did my best to live up to the standards I believed were expected of Americans. Having had the heartbreaking experience of learning that my country is not what I thought it was hasn’t changed who I AM, and the American I am and thought most of us were just never sits idly by and witnesses injustice without doing my best to right it.
After some general comments on her family, she continued,
I am SO IMPRESSED with what you two have managed to accomplish! Having struggled so long and fruitlessly to get my own country’s media to report this atrocity I am so thrilled that you are having such success in making it known in England. You are awesome! I have no doubt at all that you will achieve ALL your goals in record time and that in the process your country and Canada will force America to address the crimes which were committed and do the right thing. Sadly, I believe that international pressure is what it’s going to take.
Well, I have more work to do so I had best get to it. God bless and keep you both.
Linda
The following letter from Miller was handed in to no 10 by Lord Alf Morris, Grayson and Wintle on one of their demonstration days at Westminster. It is the unsigned version as the signed one was in an old format not compatible with this site.
March 22, 2001
Mr. Tony Blair, British Prime Minister
10 Downing Street
London, England
Dear Mr. Blair:
My name is Linda Tant Miller and I live in the state of Washington in the United States. The purpose of this letter is to provide you some of the information to which I am privy regarding the collection of HIV and hepatitis-tainted human blood plasma from the Cummins Unit of the Arkansas Department of Correction, (ADC) and its distribution throughout the world.
My brother, Bud Tant was a prisoner in the Cummins Unit from 1984 until his death from hepatitis C on March 14, 1999. Neither my brother nor his family was aware of the fact that he had this virus until approximately 1996, but according to John Byus, the current Medical Administrator of the ADC, Bud had the virus at the time he was first incarcerated there. During part of the time that my brother was donating plasma, Mr. Byus, a Registered Nurse worked in the Cummins Unit Infirmary, so he is in a position to know this fact. Bud was, nonetheless permitted to donate plasma at every collection session from 1984 until the program was terminated in 1992.
I first learned of the sickness in Canada as a result of the Cummins Unit plasma just prior to my brother’s death, but I didn’t have time to address the subject in depth until after he died. As I watched my brother die a death more gruesome and agonizing than I’d ever dreamed in my worst nightmares, I realized that millions of people all over the world would suffer his same horrendous fate and their families would stand helplessly by, suffering the same grief and agony we were enduring. I realized that most of them would never know the source of their infection, but I knew, and I vowed to my brother that I would see the atrocity exposed and those responsible for it brought to justice. I have devoted my life to this cause since that date.
Several years ago Sgt. McAlpine of the RCMP, indicated to me that they had little hope of bringing to justice the ADC administrators responsible for the knowing and deliberate harvesting and sale of tainted plasma, because by the time they got to Arkansas the paper trail was gone, so I promised him that I would find eye-witnesses and participants who would be willing to testify to what happened. I have since that time located many current and former inmates, former Cummins Unit Plasma Program staff members and a former ADC Compliance Officer who are anxious to testify to the facts of this crime.
Here are just a few of the facts I have uncovered:
Known homosexual prison prostitutes, even those in the final stages of AIDS were routinely permitted to donate plasma.
Men who were bloated and jaundiced from the final stage of hepatitis were routinely permitted to donate plasma.
Even when available, tests for HIV and hepatitis were seldom utilized, and when they were, results were often falsified.
Needles re-sharpened with sand paper and collection tubing were re-used from inmate to inmate, thereby cross-infecting virtually the entire donor base.
The collected plasma was stored in a freezer that was often out of order. Plasma rendered unfit by thawing was re-frozen and shipped out in regular shipments.
Plasma that was rejected by the plasma brokers as unfit was returned to the Cummins Unit for destruction. Out of each returned case of plasma, one or two units were destroyed and the rest was re-frozen and re-shipped.
During periods of time when the US Food and Drug Administration had shut down the Cummins Unit program due to their unsafe practices, the ADC administrators continued to collect and sell plasma, using names collected from the local telephone book and selling it through a community plasma center.
All of these charges and more can and will someday be proven in a court of law.
As I’m sure you are aware, many thousands of innocent British citizens have been sickened and killed due to the deliberate crimes committed by the MEDICAL PERSONNEL who administered the Cummins Unit Plasma Center. I hope therefore that you will join your voice to those of us who are working to see justice served in this matter. I urgently implore you to use the power of your office to spur the FBI and the US Department of Justice to implement a full-scale investigation of the people and institution that made the tainted plasma available to the pharmaceutical companies. Had it not been for the greed and corruption of the plasma collectors the people and governments of the world would not now be facing the tragedies and financial burdens with which we’re now forced to struggle
I know all too well the effect my brother’s suffering and death has had on my family. We will never be the same. I no longer work at a paying job because seeing justice done in this matter is far more important to me than my own personal comfort and finances. My parents have developed health problems due to the stress and grief of our tragedy that will soon see both of them in their graves. My sister and I have debilitating flashbacks to the time of our brother’s dying which haunt us day and night, turning our lives into nonstop nightmares of pain and grief. Multiply our suffering by BILLIONS, since the secondary infections from the Cummins Plasma Program will continue to the end of time unless science discovers cures or vaccines against the plague the Arkansas Department of Corrections and its employees have unleashed upon the world. Sir, the people who are guilty of this atrocity are the worse criminals in history and I hope you will be as incensed and determined to see justice done as I am.
I also pray you will heed the pleas of my good and wise friend Carol Grayson and take the steps necessary to see to it that no other British subjects will be infected with deadly diseases during medical treatment and to assure that fair and equitable compensation is made to ALL the victims of this atrocity.
For more information on the Cummins Unit Plasma Program please visit my web site at http://www.geocities.com/bloodcows. In addition, a friend of mine is producing a documentary film about the Cummins Unit Plasma Program that contains yet more testimony and information. It will air in a few months and I will notify you of the date and time as soon as they are known.
I will appreciate a response to this letter, apprising me of your thoughts and intentions regarding this atrocity and the plight of the victims.
Thank you for your time and attention to this urgent matter of justice.
Sincerely,
LINDA TANT MILLER
(Address supplied)
The only reply ever received from Blair’s office was an acknowledgement of receipt but no comment on the content of the letter and although Arkansas State Penitentiary has a prison history section on their website, information on the history of what was a long standing plasma programme can no longer be found.
Not long after, Grayson and Longstaff went on to initiate contact with a US law firm recommended by American and Canadian campaigners. Longstaff was then confirmed to have received factor concentrate batches which included infected prison donors from Arkansas by his San Francisco lawyers. Both Longstaff and Wintle were accepted as legitimate cases by four US plasma companies where an agreement was eventually reached though protected largely by a silence clause with regard to the details. Kelly Duda completed his well received documentary and later testified at the Archer Public Inquiry (A privately funded Inquiry set up by Lord Archer of Sandwell in 2007) at the request of Grayson and Archer, funded by the Haemophilia Society after much persuasion by Grayson and due to insufficient funding, stayed with Wintle at her then home in Tunbridge Wells.
LINKS
Law suit for infected blood (Guardian, June 4th, 2003)
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”.
Haemophilia campaigners in Downing Street, they have spent decades fighting for justice, only to be continually blocked on compensation (Image via Colette Wintle)
Haemophiliacs infected with HIV and hepatitis viruses through contaminated blood during the 1970s and 80s believed their long wait for compensation was finally about to end in 2009. The Archer Inquiry was set up in 2007 by Lord Archer of Sandwell following intense campaigning by his friend and colleague, Lord Morris of Manchester, the world’s first ever Minister for Disability. The Inquiry was established to address the events surrounding the infection of 4,670 haemophiliacs according to the Haemophilia Society figures but had no remit for “legal liability” which meant some key evidence alleging liability could not be used and was returned to long standing campaigners including this author Carol Grayson. This did not however mean there was no liability.
Many haemophiliacs had already died leaving behind bereaved partners who continued their fight for justice despite their own loss and pain. Some spouses were also infected and children of haemophiliacs as highlighted in a Newcastle case which featured in old media stories.
At the time of Archer, it was extremely rare to see the (adult) child of a haemophiliac campaigning though a handful did come to support at the Inquiry which was gratefully acknowledged. As Lord Morris stated in Hansard on 30th March, 2000, the Contaminated Blood scandal was, “what my noble friend Lord Winston, among other distinguished members of the medical profession, sees as the worst treatment disaster in the history of the National Health Service. My noble friend is a Vice-President of the Haemophilia Society.” The Archer Inquiry was haemophilia specific referring to a unique patient group of persons with inherited bleeding disorders infected through factor concentrate treatment and did not include whole blood victims, an entirely separate case infected via whole blood transfusions.
One of the main recommendations from Lord Archer’s final report was “compensation on a parity with Eire”. Lord Archer echoed the campaign aim of Grayson which she initiated in 1996 and who gave evidence to that Inquiry twice and whom he credited in the body of his report. Government, determined not to pay out proper compensation, fed the lie beginning in the early 2000s that Eire had paid out on “liability” which was totally false. This was the only reason given.
Grayson and her campaign colleague Colette Wintle (who also testified at Archer) had already established in letters from Irish solicitors, Malcolmson Law, the Irish haemophilia Society and the Eire government way back in 2004 that the Eire compensation scheme was a “no liability” out of court settlement paid out at court levels on the grounds of “extraordinary suffering” so haemophiliacs would not have to endure years of additional stress taking legal action. Grayson wrote to many MPs of all parties on the 23rd February 2004 to inform them of her concerns re government lies as follows in a cut and paste image of the letter (minus her personal address),
Years later in 2009, haemophiliac Andrew March who was at that time hosting Grayson’s dissertation on his website, Slowly, Slowly, Catchy Monkey, discussed the possibility of taking a Judicial Review in the High Court, (something that Grayson had also been considering) to challenge the lies and government’s “line to take” to oppose compensation on a parity with Eire. They decided that this would be best in the name of a haemophiliac as opposed to a widow so Grayson offered to support a case if March proceeded. She was also willing to allow the original letters to be used as was Colette. March then suggested his lawyers work with Grayson. The following letter by email to the lawyers (cut and pasted, which she requested permission to show to relevant persons at the time) was submitted to the Infected Blood Inquiry set up in 2018 under Chair Sir Brian Langstaff and can be viewed here as follows:-
Grayson who sent dozens of emails of key evidence to March and his legal team and gave her time for free had only one request and that was that she accompany March when he visited his QC so she could present and explain her own research on Eire. This was agreed but never happened, March presented the evidence without her. Grayson’s awarded dissertation disappeared overnight from March’s website and she was seemingly referred to in court as “An Other” despite being public in her campaigning.
Such is the misogyny still existing in the haemophilia community that some will neither recognize that female haemophiliacs exist nor give credit to a female campaigner/ researcher, sadly a theme very familiar to Grayson and Wintle. This is also evident in Tainted Blood’s Timeline where March credits himself but TB as a group refuse to credit the person who discovered and put many of these documents together as a “collection” as part of her dissertation. The original credit for her and her late husband was removed when the old website went down and despite requests to return it has not yet reappeared.
This ongoing misogyny within the haemophilia community is a reflection of that within wider society. With regard to the Contaminated Blood campaign, instead of supporting Grayson and Wintle, the constant blocking by some so called “blood brothers” to massage their own egos, has had the effect of slowing down progress for truth and justice possibly by years whilst fellow haemophiliacs, such as Grayson’s husband Peter, an ardent feminist who supported his wife and many others died.
Interestingly however as has recently been highlighted by the Infected Blood Inquiry, it has been Grayson and Wintle whose names have repeatedly appeared over the years and been cited within internal government documents discussing the impact of campaigners going back decades and how to handle them. It wasn’t the men making the waves so much as the women and the women have the extensive back catalogue to prove it, long before most other groups even existed.
To Grayson who studied Gender, Culture and Development for her Masters Degree (Distinction) the treatment of females in the haemophilia community and misogyny they have faced in addition to the impact of the contaminated blood scandal is similar to how female activists were treated in the Black Power movement in America during the 1960s and 70s. Just substitute the word, black with haemophiliac. As Grayson wrote in one of essays, Elaine Brown speaks of gender inequality in the following quote,
“A woman in the Black Power Movement was considered at best irrelevant. A
woman asserting herself was a pariah. A woman attempting the role of leadership
was, to my proud black brothers, making an alliance with the ‘counter –
revolutionary, man-hating, lesbian, feminist white bitches. It was a violation of
some Black Power that was left undefined. If a black woman assumed a role of
leadership, she was said to be eroding black manhood, to be hindering the
progress of the black race. She was an enemy of black people” (Brown, 1992,
p.357)
Those men who did support Grayson and Wintle were respected and valued, one being Steve Wintle often seen at demonstrations to campaign with his wife, the late Peter Mossman, co founder of the Manor House Group and others including from the original Birchgrove Group who gave encouragement by phone and email and turned up in person to hear Grayson and Wintle when they gave evidence at the Inquiry.
To return to the JR, not surprisingly it was won with March praised for “his” research while Grayson was left sat at home watching his interviews on TV outside the High Court whilst she mourned the fifth anniversary of the death of her husband. A Guardian article on the ruling can be read here,
Court ruling may help contaminated blood victims win higher payouts
It might have been expected that the government now having been judged that their original decision regarding compensation on a parity with Eire was “infected with error” would immediately apologise for their lies and introduce an Irish type compensation scheme… but not a bit of it. The government then moved the goalposts introducing another reason stating they didn’t have to follow Eire. The lies in fact continued.
So what is the situation regarding compensation in 2022. Sir Robert Francis QC released his report in June and the main report and key recommendations can be viewed on the Haemophilia Society article written by Jessica Bomford, see below,
In addition, Sir Brian Langstaff, Chair of the current Infected Blood Inquiry has published his interim recommendation, after inviting submissions from lawyers representing their clients and from those infected and affected. As ITV highlighted, he stated,
“I recommend that: (1) An interim payment should be paid, without delay, to all those infected and all bereaved partners currently registered on UK infected blood support schemes, and those who register between now and the inception of any future scheme; (2) The amount should be no less than £100,000, as recommended by Sir Robert Francis QC.”
Children and parents were not included in this initial interim recommendation but Sir Brian stressed that this was just the beginning and work continues. Many haemophiliacs have died since the Inquiry began, those remaining are in poor health and bereaved partners also now have health issues after decades of caring for their loved ones unsupported. It has taken so long to campaign, they are now in the older age groups.
Hopes were temporarily raised that government would finally deliver when journalist Caroline Wheeler indicated that those infected and affected would hear from government last week regarding compensation…. only to be dashed yet again when nothing materialised by 5pm last Friday.
The Haemophilia Society Inquiry team, tweeted, on the 15th August,
Good afternoon. We’ve just been informed by the Cabinet Office that there will be no announcement on interim compensation payments today. Apparently we’ll hear something ‘this week’, but have nothing more helpful to pass on to you at this stage. This cruel wait continues.
Clare Souter responded poignantly by saying,
My lovely dad, Michael Souter, passed away on Thursday. His death certificate states Hepatitis C from contaminated blood products as cause. In regards to compensation, he always said he’ll believe it when he sees it… he never will now
For some haemophilia campaigners this is their third Inquiry, Archer, Penrose (Scotland) and now the Infected Blood Inquiry. The evidence presented (where it was made possible to present it and was not blocked as with Penrose) has been damning and screams out alleged negligence and wrongdoing. Ben Harrison of Milner’s solicitors representing both Grayson and Wintle who are core participants in the Infected Blood Inquiry, and have already given evidence, wrote a recent article stating,
The government’s lethargy in responding to the interim recommendations of the Grenfell Tower Inquiry illustrates the point perfectly and gives cause for caution amongst those representing the victims of the contaminated blood scandal.
The sad fact is that many of those victims do not have time on their side and those representing them must be prepared to take whatever legal action is necessary to achieve justice for them before it is too late.
Put more simply, if the government fails to act on the recommendations of Sir Brian, then legal proceedings will inevitably ensue.
See following for full article,
Why Government’s response to blood inquiry will be a litmus test for other inquiries – Ben Harrison (Yorkshire Post, 9th August, 2022)
UPDATE… BREAKING NEWS… Even as the author is writing, just after midnight on the 17th August 2022, the government has finally released a statement granting infected haemophiliacs and affected bereaved partners interim payments, see below,
Press release
Infected Blood victims to receive £100,000 interim compensation payment
Thousands of victims of the infected blood scandal will each receive an interim compensation payment of £100,000
The interim recommendations of Sir Brian Langstaff have now been granted in full.
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”.
Colette Wintle who has spent her entire life managing haemophilia and the misogyny that surrounds it (Original image, via Colette Wintle)
For decades women whose blood had a clotting deficiency were told even by some care providers that they could not be haemophiliacs. WRONG!
Although most haemophiliacs with the inherited bleeding disorder are men, there are female haemophiliacs too, though only officially recognized more recently.
In November 2018, Mike Makris, Professor of Haemostasis and Thrombosis in Sheffield, UK tweeted,
There are 920 female patients with #haemophilia in the UK (652 A and 268 B). The new ISTH SSC definition recommends that female carriers with FVIII/IX levels of less than 40% should be considered as having #hemophilia
One of which is this author’s campaign colleague of nearly 3 decades, Colette Wintle who is a female haemophiliac infected with hepatitis B and C and exposed to vCJD through her factor concentrate treatment taken to help stop bleeding. Many haemophiliacs were infected during the 1970s and 80s when blood was taken from virally high-risk donors such as drug addicts, gay men and sex workers and plasma products were imported from the US. As well aa the many problems of living with multiple viruses, Wintle has long highlighted the difficulties of being accepted as a haemophiliac in a misogynistic environment where even some male haemophiliacs have been confrontative and denied her medical status.
Miller and Bean, in their study published in Haemophilia on the genetic causes of hemophilia in women and girls, concur. They wrote, “The dogma that hemophilia affects males and is transmitted through unaffected females has over centuries hampered the recognition that women and girls with hemophilia may bleed as significantly as affected males.”
It was only around the mid-20th century that the medical world began to recognize and discuss cases of female hemophiliacs.
The Centre for Disease Control state,
Hemophilia can affect women, too
Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of hemophilia. A female carrier can also pass the affected X chromosome on to her children.
Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis. Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is important to raise awareness about this fact to help women with hemophilia receive the care and support they need to live healthy lives.
Wintle who helps inspire others and was instrumental in working with the UK Haemophilia Society over 2 decades ago on their campaign titled “Women Bleed Too” has often highlighted there are some differences in the way female haemophiliacs bleed compared to men sadly often downplayed or forgotten. Here is Wintle’s experience of being a female haemophiliac in her own words.
Life with a bleeding disorder as a woman
In current climes women and girls are having to fight harder than ever before for recognition of their gender and biological sex. So it is now even more important that as girls develop into womanhood, and adapt to the natural evolvement of physiological changes in their bodies, they are supported through their experiences with periods, childbirth and menopause. This is especially important for females who have inherited bleeding disorders such as Haemophilia A, Haemophilia B, Factor X1, and Von Willebrands. All of these bleeding disorders impact on the quality of their lives, and they are particularly vulnerable in the healthcare sector where knowledge and understanding of these conditions has not received the recognition they so deserve in comparison to males with inherited bleeding disorders.
I am a female haemophiliac who was born into a family with a long history of the condition Haemophilia A, commonly known as Factor 8 deficiency. I was diagnosed at the age of three in 1962 at a time when the medical profession only recognised women as carriers of Haemophilia but not symptomatic of the condition! In my family, a well- respected haemophilia consultant researched my family history and discovered evidence covering a 200 year period of female relatives who had bled far more profusely than their male counterparts! Incredibly, it has taken until 2021 for the medical profession to finally accept and write about female haemophilia. Throughout my life I have received poor substandard treatment and suffered unnecessarily due to the ignorance and patriarchal attitude of many haemophilia clinicians, who thought they knew better than I, living with the condition of Haemophilia. I hope that by speaking out over my lifetime and challenging the medical fraternity it has influenced the thinking and attitude towards women who bleed.
This was my experience of growing up with Haemophilia. When I was a child I was as adventurous and active as any other child and inevitably suffered from accidental cuts and bruising and I experienced daily nosebleeds of varying severity. Although I was registered with a Haemophilia centre in Glasgow, I was never offered any haemophilia treatment, so I had to deal with small joint bleeds, muscle and tissue bleeds, and on one occasion had substantial bleeding from a dislocated elbow joint without any medical intervention. I spent months out of school with a substantial bleed that rendered my arm useless. I recall it was black from wrist to shoulder and twice the size of my other arm.
When I started menstruating at the age of thirteen, I bled for two weeks out of every month and over three years became severely anaemic. Each of these experiences had an impact not just on my health, but on my schooling both in primary and secondary education. It alienated me from social interaction with my contemporaries and I struggled with my self- esteem and confidence. At no point was I ever provided with specialist medical support, advice or treatment! It was only after years of persistent problems with tonsillitis that I had my first ever treatment for post operative haemorrhaging. I was treated with clotting factors (which I discovered 26 years later were imported from the US) and subsequently developed the life changing condition of chronic Hepatitis. I had been exposed to Hepatitis C!
Further need for blood clotting treatment in 1982 and 1985 resulted in reinfection with hepatitis B and C placing my liver under additional attack and now co- infected with Hepatitis viruses. During the many hospitalisations throughout the 1990’s, I repeatedly pointed out that the level of bleeding I was experiencing was disproportionate to the diagnosis of being a mild haemophiliac, I insisted on the doctors revisiting the genetic diagnosis from 1962 and was found to be carrying a second bleeding disorder—- Factor 11. My instinct had been correct! I had for many years been undertreated and suffered blood loss that could have been prevented. As a young woman I had to suffer in silence for years and deal with the indifference of the doctors who were charged with my medical care.
Even in childbirth I was neglected by the medical profession.
Throughout my first pregnancy I was abandoned by the local healthcare providers without an assigned midwife because I resided outside of the health authority district in charge of my haemophilia care. At that time, I was registered at a haemophilia unit in London as there was not a local unit. Subsequently, I had very little care or consultation with anyone other than my GP until nearer to my due date. My daughter entered the world three weeks early and I was forced to make a stressful three hour journey to a north London hospital whilst in labour. Due to complications, I underwent an emergency caesarean. Due to the geographical distance between home and hospital I was separated from the support of my family and husband.
During my two weeks incarceration in the hospital, I received extremely poor and often non- existent nursing care, which resulted in me suffering an internal bleed on top of my caesarean wound. It took a week for the doctors to attend to it, scan and treat me. Because of this appalling lack of care, I was forced to remove my IV line delivering much needed treatment, because there was simply no one to take care of my new baby, who was left in a cot at the side of my bed. What should have been a wonderful experience turned into a miserable one and reduced me to tears. I struggled to recover from this for a long time afterwards, and this was in addition to also suffering the symptoms of an ongoing liver condition!
As time went on my health deteriorated and I was forced into early retirement from my job as a nurse. Many other serious illnesses followed and major surgeries including the loss of an ectopic pregnancy and the loss of a twin pregnancy. At no point was I ever offered counselling or practical help but had to soldier on as I had previously. As my liver disease progressed, I was encouraged to undergo anti- viral chemotherapy treatment to eradicate the Hepatitis virus. I was left to administer the treatment by self- injecting with Interferon and Ribavirin medication. It was a terrible experience physically, mentally and emotionally with no assistance whatsoever from any healthcare workers. The treatment caused extreme physical damage. I was in constant pain, and I also developed other medical conditions. Worst of all, it caused an early onset menopause.
Yet again there was no available access to care, advice, counselling, or medical treatment. I experienced numerous unpleasant symptoms and side effects such as night sweats, itching skin , mood swings, increased fatigue, hair loss and flooding until many years later I was offered a coil insert which controlled blood loss. I had to put up with all these unpleasant symptoms over a period of twenty years.
When I consider my lifetime of living with haemophilia and all that I endured at the hands of health care providers, I realise that it has been a long continual battle to get the level of care I should have received. Much of this caused by the resistance of the many doctors to acknowledge my experiences and who dismissed and ignored my obvious medical needs. As a woman living with haemophilia, I believe even more strongly now that we must remain vigilant in protecting future generations of women with inherited bleeding disorders, and their right to access the same standard of healthcare available to men. In recent times there has been a shift in attitudes which I am very glad is evident in the research being published and reported in medical literature currently. There is greater awareness of woman with bleeding issues now, but it is vital that we ensure going forward, that no one should experience the battle for professional medical care as I did.
Colette Wintle
End
The NHS “Overview” of Haemophilia largely avoids mentioning biological sex in its online information pages other than to say, “Haemophilia is a rare condition that affects the blood’s ability to clot. It’s usually inherited. Most people who have it are male” and advises to “avoid contact sports such as rugby.” However this alone does not help when it comes to those wishing to learn about how women may bleed as in the sections about types of bleeding, it simply ignores periods, childbirth and the menopause. (Also, to make a point, it can be highly uncomfortable indulging in any sports with a headache, painful cramping and heavy menstrual bleeding though that appears to be missed.) See following,
Now after years of misogynistic treatment with regard to female haemophiliacs bleeding, there are attempts to stop referring to the words “girls”, “woman” and “women” in relation to periods even if it did appear in the NHS haemophilia section. Today the Metro published an article on a separate section on menstruation in general with the title, NHS guidance on periods doesn’t mention girls or women once. The Metro states,
An NHS website about periods has triggered a debate for using gender-neutral language instead of the terms ‘girls’, ‘woman’ or ‘women’.
Bloody Brilliant was commissioned by the Welsh government and the NHS last year, costing the taxpayer £84,000.
Is this yet another way to write women out of the equation and lesson their voices? Females identify with these words and its particularly helpful in medical conditions where through biological sex, conditions may present somewhat differently in men and women such as haemophilia.
As Healthline explained…
A woman’s period and hormonal changes are the result of her natural reproductive cycle, sex therapist Janet Brito, PhD, LCSW, CST says. “The hormonal changes she endures are in preparation for possible conception. [Cisgender] men do not experience the cycle of producing ovocytes, nor do they have a uterus that gets thicker to prepare for a fertilized egg. And if conception does not occur, they do not have a uterine lining that will be released from the body as blood through the vagina, which is what is referred to as a period or menstruation,” Brito explains.
“In this definition, men do not have these types of periods.”
Individuals can present as who they wish to be, that is their choice however they can’t simply cancel out biological sex nor should they, nor the fact that women and girls will bleed differently to men through having their period, childbirth and throughout the menopause and the implications and complications that may bring. Female bleeders and service providers need to educate themselves, learn how to manage these times, access and provide support and language is important. So, when so called “woke” crosses the line and starts to verge on the damaging and sometimes dangerous, and biological facts are obliterated, then for the sake of good health, woke is best cancelled out!
Ginger Rogers once said about dancing… “I do everything the man does, only backwards and in high heels!” In terms of haemophilia, women get most of the bleeds men get (bar those related to cock and balls) but in addition add on periods, pregnancy and the menopause, whilst dealing with an often male orientated plan of care and then facing misogyny!
Link, for further Informationon women who bleed
How bleeding disorders can affect women (UK Haemophilia Society)
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”.
Susan Deacon who recently gave evidence to the Infected Blood Inquiry (Image via the Inquiry)
On Friday the 28th July 2022, Susan Deacon gave evidence to the Infected Blood Inquiry chaired by Sir Brian Langstaff which is investigating how haemophiliacs became infected with HIV and hepatitis viruses through their factor concentrate, blood product treatment in the 1970s and 80s. (It is also looking at cases of infection through whole blood transfusions though this is separate to the case of haemophiliacs.) Deacon was the Member of the Scottish Parliament (MSP) for Edinburgh East and Musselburgh from 1999 to 2007 and served as Scotland’s first Cabinet Minister for Health and Community Care following the creation of the Scottish Parliament in 1999.
From the mid 90s/early 2000s there was growing pressure across the UK for a public inquiry as haemophiliacs were finally being told they had been infected with hepatitis C as well as HIV, in many cases, the positive test results only given to them several years after being tested for HCV. This resulted in deep concern and anger from haemophiliacs and pressure to find out more regarding the circumstances of their infections and why results had been withheld.
Over two decades ago, They Work For You reported the following question put to Deacon and her response.
Brian Adan SNP
Question S1W-5627 To ask the Scottish Executive whether it will commission an independent inquiry into hepatitis C and other infections contracted from contaminated blood products in Scotland
Susan Deacon Labour
A fact-finding exercise into specific aspects of this issue has been underway for some months now. I met with the Haemophilia Society in September 1999 to discuss their concerns first hand and thereafter tasked my officials with ascertaining the facts surrounding the heat treatment of blood products for haemophiliacs in the mid-1980s. This will assess whether haemophilia patients in Scotland were exposed to the risks of the hepatitis C virus through blood products longer than they should have been, given the state of knowledge at the time. The outcome of this investigation will allow me to decide whether any further action is warranted.
The Haemophilia Society, the Scottish National Blood Transfusion Service and the Scottish Haemophilia Directors have all been asked to provide information. My officials are currently analysing the information gathered. This is a complex area and it would be premature to comment on possible outcomes until all the facts have been properly examined. I have undertaken to make the findings available to the Health and Community Care Committee and to the public.
For long standing campaigners that were around at that time, this was instantly problematic and the following gives a broad overview of campaigning between England and Scotland at a time when Scotland had become newly devolved but dealing with infections that had occurred under a UK wide Westminster government.
The then Haemophilia Society had been slow on the uptake regarding campaigning for hepatitis C. The Manor House Group (Founded by the late Peter Mossman and the late Peter Hughes), Haemophilia North (later known as, Haemophilia Action UK, this author’s group) and Colette Wintle (Independent Campaigner) had all begun campaigning within a week of each other in 1994. It took a further year for the Society to take hepatitis C seriously and then only under pressure from the groups and with great reluctance and resentment.
When Grayson called for “compensation on a parity with Eire” in 1996 writing to the Society on this issue, the Society looked at the Eire scheme then sold out asking government for a “hardship fund” as opposed to full and proper compensation. Haemophiliacs with HIV had already received an ex-gratia payment for their infection in 1991 but had been made to sign a hepatitis Undertaking named the “waiver” by Grayson not to take legal action for hepatitis infections. It was only later in 1994 that Grayson and her late husband Peter Longstaff were told that he was infected with hepatitis C though a test result obtained showed he tested positive in 1992.
Longstaff had been tested without pre test counselling, without his knowledge and permission using blood taken to measure his clotting levels and his positive test result had been withheld. In addition, they then found out that key evidence had been withheld from litigants on the dangers of this HCV virus within the HIV litigation documents which were already known to lawyers way before their clients signed the waiver. The couple then realized that in order to take a case to court for hepatitis infection(s) they must first access legal aid to overturn the waiver showing what had happened and that this couldn’t be deemed “informed consent”. This was the catalyst that sparked their setting up a campaign group in 1994.
When the Society did launch their campaign on hepatitis C in 1995, they then made a dreadful decision to divide the haemophilia community by campaigning only for those that had been infected with HCV but not HIV, this was despite the fact that almost all haemophiliacs infected with HIV were also infected with hepatitis C. At one point when Grayson tried to enter parliament to attend a campaign event, she was confronted by the then CEO who made clear she wasn’t welcome and stated that her husband “had had his money”. What Karen Pappenheim didn’t address, was that HIV positive haemophiliacs that were now under the Macfarlane Trust which provided financial assistance had not received a penny for hepatitis C, nor was it part of the Trust deeds. Jim Cousins, Grayson’s MP at that time came out of his office to escort her into Westminster Hall.
The Society were also refusing to look at key evidence from campaigners on many different aspects of hepatitis C including the delays in bringing in a test, the testing of haemophiliacs without their knowledge and permission and the withholding of positive test results. Despite offers from campaigners to work with the Society and share emerging evidence, this fell on deaf ears by an organization increasingly defensive in its position. There was a great deal of tension between the Society and campaigners at that time, not helped by what campaigners viewed as a “conflict of interest” in that the organisation received funding from the international pharmaceutical companies linked to their infections.
In this hostile environment, Grayson and Wintle decided to form a quiet alliance with Scottish campaigner Phil Dolan who was to become a trustee of the Society and in a sense a “spy in the camp” regarding the Society’s actions and thinking. There were some signs that Scotland might be slightly “softer” than Westminster in investigating the infection of haemophiliacs and providing recompense, so they hatched a plan to release evidence through Scottish media a day after key stories broke in Newcastle where Grayson and Longstaff had just formed the Bad Blood campaign jointly with journalist Louella Houldcroft of the Journal. A decision was taken that Grayson would share her evidence with Scottish journalists that could be used cross border but local Scottish campaigners would do the interviews to provide a picture of their own experiences of infection and the issues around this locally.
The Haemophilia Society at that time was not well informed, was half- hearted in its own campaign stance for fear of potential liability issues and aggressive to campaigners attempting to investigate what went wrong. The Society had actively campaigned to continue importing US factor concentrates against safety advice, even after the advise from Dr Spence Galbraith (Public Health Laboratory Service) was to withdraw this treatment from the shelves immediately in May,1983 to avoid infection of haemophiliacs with the AIDS virus. It was against this background that Deacon was engaging with the Society but we do not know how much of this information regarding the organization’s breakdown of their relationship with many campaigners would have been known to her at that time.
Deacon’s fact- finding exercise was limited in nature and focused mainly on heat treatment. It did not appear to give consideration to those who were very likely infected with hepatitis C through their first shot of imported US factor concentrates that had been used on children at York Hill hospital and any safety violations in that regard. As haemophiliac Colette Wintle discovered, imported treatment was used on her in 1976 whilst a patient at Glasgow Royal Infirmary despite a warning letter being sent to Westminster government official a year earlier warning of the dangers of using US plasma and the increased hepatitis risk due to “high-risk” paid donors being used.
One person who did understand the dangers of US products was Dorothy- Grace Elder, Member of the Scottish Parliament for the Glasgow Region 1999 to 2003 with whom Grayson had made contact and spoken by phone As a former journalist, Dorothy-Grace told this author she had become aware of the differences in the collection of US plasma from paid donors compared to those in the UK, blood taken from better screened, volunteer donors and was determined to raise this issue in relation to those treated in Scotland.
Worried that the Haemophilia Society would only have shared limited concerns with Deacon, and withheld campaigner’s evidence sent to them, Grayson decided to write to the minister offering the opportunity to meet her, with Dorothy-Grace included, to discuss evidence that might help push for a full public inquiry in Scotland.
Grayson has shared this letter to Deacon with the Inquiry and the text can be viewed here:-
02/07/2000. Carol Grayson,
PO Box 782,
Newcastle Upon Tyne.
NE99 2UW.
Re: Haemophiliacs Infected with Hepatitis C Through NHS Blood Products.
Dear Ms Deacon,
I was delighted to read an article in the Scottish Daily Record & Sunday Mail Ltd June 22nd 2000 that you are ordering a report into how people in Scotland contracted hepatitis C through blood transfusions. Yourself and Dorothy –Grace Elder are to be commended for the responsible attitude you are taking with regard to this issue. My MP Mr Jim Cousins (Newcastle) has supported my partner a haemophiliac infected with HIV, hepatitis B and hepatitis C through NHS blood products for several years now in our fight for a public inquiry and recompense. We lost my partner’s brother, also a haemophiliacs to AIDs in 1986.
I have enclosed a letter sent to Mr Milburn asking a number of pertinent questions to which I received the extremely unsatisfactory reply enclosed! I would be grateful if you in your capacity as Health Minister for Scotland could stress to Mr Milburn the importance of answering the questions put to him and ordering a public inquiry in England into how people became contaminated with these viruses.
May I suggest that you look at the Lindsay Tribunal currently taking place in Ireland (Tribunal updates available by e-mailing haemophiliasociety@eircom.net and requesting copies) and also the Krever report (Canada) if you have not already done so. Some of the information with regard to imported human plasma products is relevant to England, Scotland and Wales also. I think it is essential that any report looks at where the plasma was sourced. It is not good enough for the Department Of Health to claim that nothing could be done to avoid infection with HIV and hepatitis C prior to blood tests becoming available. As a qualified Senior Nursing Sister (although now a full time carer) I am appalled that plasma was collected from populations known to be “high risk” such as prisons with hepatitis infection rates 12 times higher than the general population. It was also collected from paid donors in centres in Central Africa (the epicentre of Aids), Central America, (Nicaraguans burnt their centre down it was so bad), skidrow “hotspots” of North America (highlighted in the “World In Action” documentary program “Blood Money” as far back as 1975) and at times from cadavers which is immoral and illegal.
I have collected substantial information on “tainted blood” over a number of years and would be happy to meet with yourself and Dorothy Grace -Elder at your convenience to discuss this. I feel much of this information has been suppressed as this information has far –reaching consequences for those involved in the multi-million dollar blood industry and could be very costly for our Department Of Health!
The pharmaceutical firms manufacturing blood products imported to the UK which should be looked into are Baxter, Hyland Travenol, Alpha Therapeutics, Green Cross Japan, Cutter, and Armour. Some are now defunct or have been taken over and changed their names. Prisons involved in plasma collection were Arkansas (licences renewed I am told by none other than the former Governor Of Arkansas, Bill Clinton), Angola Prison and Arizona State Prison. I am in touch with campaigners in Arkansas who can provide information from both prisoners who donated to the prison plasma program and people who worked at the plasma centre. I hope I can be of assistance in bringing to light the appalling practices with regard to the lack of safety and lack of checks /quality controls on imported blood bought by the Department Of Health which has resulted in so many needless deaths in the UK as well as the exploitation of poor, sick and vulnerable groups in other countries to provide plasma for the blood industry.
Canada now has a major criminal investigation into how so many of their haemophiliacs came to be infected with HIV and hepatitis C though imported American plasma. Canada, Italy and Southern Ireland are among those countries that have had public inquiries into their own blood services and imported treatment and provided compensation to infected haemophiliacs and their families, including widows and dependants.
My partner has just been granted legal aid against the Department Of Health! Over 1200 haemophiliacs were infected with HIV. 800 are now DEAD.
95% of those originally infected with HIV are also now CO-INFECTED with hepatitis C (HCV).
According to Haemophilia Society statistics over 4000 haemophiliacs are infected with hepatitis C alone. (MONO-INFECTED)
120 haemophiliacs are now DEAD from hepatitis C. The majority of these deaths were from the C0-INFECTED group.
Hepatitis C has now taken over from AIDs as the biggest killer of haemophiliacs in Europe and the United States.
Thank-you for taking the time to read this.
Yours sincerely
Carol Grayson (Campaign Co-ordinator Of The 2/2 Campaign, A Second Campaign For A Second Injustice.)
Tragically, Deacon (or those in her office) did not take up Grayson’s offer and an opportunity was missed to view important evidence that should have led to a full public inquiry, evidence now being used by the Inquiry to question key witnesses.
Dorothy-Grace continued to raise her concerns over blood safety highlighted during the Health and Community Care Committee meeting on the 25th Oct 2000 attended by Susan Deacon where the following exchange took place,
The Convener:I think we all did—even Duncan Hamilton.
Dorothy-Grace Elder: I clearly remember being involved with the people who were clamouring for a heat treatment centre in Scotland. The concern was HIV, not hep C, which, as the minister correctly says, was not recognised until 1989. However, people realised that they had something exceedingly dangerous on their hands and that, often, another virus was involved. I also remember that the sums of money involved came to only a few hundred thousand pounds and that Scots pleaded with the Conservative Government to give them that to conduct the heat treatment. How can the Government today body swerve the tragedy that has occurred due to hep C subsequent to the HIV tragedy? Will the minister at least consider ex gratia payments to the families?
The Convener:Would those be technical ex gratia payments, Dorothy-Grace? I really do not think that that was a technical question. Other people are waiting to ask non-technical questions.
Susan Deacon:Members are asking a range of technical questions, many of which, I hope, are addressed in the report. If the committee wants to take it up, the offer remains for one of our medical advisers or perhaps the deputy chief medical officer, who was involved in the report, to come along to discuss the matter further.
Dorothy-Grace Elder referred to ex gratia payments. Compensation has been discussed quite fully. Let me differentiate between negligent and non-negligent harm. The essence of the report was to investigate whether there had been negligence during the period in question, which would require the NHS to pay compensation on the ground of harm having resulted as a consequence of negligence.
Having examined the information carefully, we have found no evidence to suggest that there was negligence, for the reasons that we have outlined and, as Richard Simpson indicated, because of the chronology of events and when medical and scientific knowledge advanced.
There is also the question of non-negligent harm. The NHS not paying compensation for non-negligent harm has been a generally held principle. That was revisited in these cases, two years ago by the UK Government, by previous Conservative Governments and now by the Scottish Executive.
Having examined the issue we do not see there being a case to change that principle in this instance. I am bound to say that all medical treatment carries a degree of risk. The issue is about the balance of risk and how we deal with it.
By the 1st February 2001, a significant event had already taken place over the border……….a small step on the road to justice for at least one haemophiliac given US factor concentrates in Scotland.
One New Zealand child visiting his relatives in Scotland and infected with HIV in 1980 at York Hill hospital after bleeding whilst on holiday had received a settlement direct from a US pharmaceutical company. The father of the boy, Ian Reddie, had come to England and approached Grayson for advice on tracing medical records from York Hill and a search was put in place. Subsequently armed with the evidence he needed (and keeping in mind his son had never received factor concentrates before his visit to Scotland), he flew to the US to confront the company and they paid up for the boy’s infection for both HIV and hepatitis C, albeit a low amount.
On 14th March 2001 Dorothy- Grace again tried to highlight her numerous concerns regarding safety of both Scottish and US products at the Health and Community Care Committee. The following are excepts from her and other participants as follows:-
Dorothy-Grace Elder: I dare say that you have read the written statements of the Haemophilia Society. Can you comment on the fact that approximately 400 haemophiliacs in Scotland depend on the safe factor VIII? Could it not have been considered the duty of the Scottish National Blood Transfusion Service to adopt the tested heat-treatment methodology that was used in England?
Angus Macmillan Douglas: I shall ask Peter Foster to answer that in detail in a moment. Let me first clarify your question, which I did not hear properly as the door opened and closed in the middle of it. Are you asking why Scotland was not able to introduce the hepatitis C-safe factor VIII product in autumn 1985, although it had been introduced for a minority of patients in England?
Dorothy-Grace Elder: Yes.
Further on she attempts to raise questions on the use of US blood products in Scotland as follows:-
Dorothy-Grace Elder: Convener, may I ask— The Convener: No. Dorothy-Grace Elder: —about American blood imports— The Convener: No. Dorothy-Grace Elder: —of skid row blood— The Convener: I said no, Dorothy-Grace
Dolan also contributed,
Philip Dolan: First and foremost, we believe that an independent inquiry would examine all the issues that have arisen in the contamination of blood products.
(Phil Dolan would later be awarded an MBE for his services to haemophilia.)
Another old friend of this author also spoke out, the late Patricia McAughey who shared information from the Haemophilia Society on so called campaign updates as a Scottish representative (another “spy in the camp”). Pat’s husband, John (also now deceased) was to later share some of his recombinant treatment with Grayson’s husband which was kept in the event of an emergency bleed when the Newcastle Health Authority refused to supply this on the grounds of cost resulting in Longstaff taking his case to the High Court in London. (The Judicial Review was lost on the grounds that it would open the floodgates for other treatments beyond haemophilia if the case was allowed to go through and a precedent set.)Grayson would catch a train up to Scotland to receive this treatment when Longstaff was on treatment strike refusing human plasma productshighlighting the need for ALL haemophiliacs to be given recombinant not just a select few through post code lottery.Here is McAughey’s comment,
Patricia McAughey (Haemophilia Society): My husband has severe haemophilia A and hepatitis C. His treatment was changed in 1980 from cryoprecipitate to factor VIII. We were given absolutely no warning that that product could transmit any viruses. Had he been given a warning, he would not have taken the treatment. It is false to say that all bleeds in haemophiliacs are life-threatening—they are not. They are uncomfortable, painful and troublesome, but not all are life-threatening. Haemophiliacs can usually distinguish between what will be a troublesome bleed and what will be a serious bleeding episode. I can speak only for my husband and me, but had we been warned of the risks, we would not have taken the factor VIII.
Dorothy- Grace was not one to give up and continued her questioning, with Dolan chipping in to support.
Dorothy-Grace Elder: That is one of the points that I wanted to close in on. The submission says that the original remit of Susan Deacon’s internal inquiry was far too narrow, because it focused almost exclusively on the SNBTS. The word negligence has been used. Do you want the inquiry to be widened into a public inquiry, involving bodies such as the Scottish Office—as it was at the time—the Department of Health in London, clinicians and political decision makers of the time? Nodding your heads is good, but will you answer ―yes‖ for the Official Report? Philip Dolan: The answer is yes. We asked for that when we met the minister on 14 September 1999. Dorothy-Grace Elder: What input did you have to the remit? Who decided the narrowness of the remit? Did you request of the minister that bodies
such as those that I mentioned should be involved? Philip Dolan: Initially we asked for a public inquiry. We had no further discussion with the minister after we asked for that. The minister said that the new Scottish Executive and Parliament would be transparent and that everything would be out in the open. However, the inquiry was not transparent. We did not get the opportunity for a public inquiry. To this day, I still do not know who the author of the report was. We can only speculate on that. The Convener: Another point has not been dealt with. The report was significantly delayed. It did not come back when we expected it to. Dorothy-Grace Elder: I want to ask a quick question. As has been mentioned, Mr McKissock is too ill to be here. He intended to deal with the matter of compensation. The Convener: I am sorry, Dorothy-Grace. One of your colleagues will deal with compensation; Shona Robison will come to it in a second. John McAllion will ask the next question.
This week, Katie Scott QC at the Infected Blood Inquiry did ask a question filed through Grayson’s legal team and probably others, regarding whether Susan Deacon regretted not meeting more campaigners when she was in office. Deacon indicated that she did.
It is one of the great myths surrounding the Contaminated Blood scandal that key evidence was not available until a new campaigner Jason Evans emerged in 2017 to “discover” incriminating documents, Far from it! Certainly from 1994, campaigners were beginning to build up a mass of documents including accessing the evidence on government decision making, policy and practice from the HIV litigation. They had important papers from the 1996 settlement in Eire and key evidence from legal cases won in the US and Canada. In addition they had acquired some UKHCDO minutes, evidence of experimentation on haemophiliacs and information was being gathered from medical records and international journals. Then there was Douglas Starr’s book, Blood: An Epic History of Medicine and Commerce published in 1999. Grayson’s mother had read a review when it first came out and sent it to her which again helped to open her eyes especially on the practices of the US pharma companies.
What is also disturbing is how so many within the media have reported badly rehashed stories minus any proper referencing and ignoring the dates the original evidence was presented by long standing campaigners to government ministers. They have rewritten history in a way that has helped those responsible for the scandal and for the most part failed to deal with written complaints for media corrections from members of the haemophilia community. This is by design not accident as editors have repeatedly been shown evidence of the correct and far earlier dates of discovery that they do not want to acknowledge or publish.
It wasn’t a question of having nothing with which to tackle ministers, doctors, UK authorities and pharma companies from the 1990s onwards but that papers were either not passed to politicians, were sat on by civil servants and not addressed, or were deliberately blocked. To repeat the words of Andy Burnham, former health secretary, “this is a criminal cover-up on an industrial scale.”
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”
Hazel Blears giving evidence to the Infected Blood Inquiry where her “line to take” re compensation with government inadvertently highlights comparisons in safety violations between US and Canada that affected and infected UK haemophiliacs (Image, via Infected Blood Inquiry)
The author of this post Carol Grayson (Haemophilia Action UK) and her colleague Colette Wintle (Independent campaigner) both of whom have fought for decades for the victims of what Lord Winston called “the worst medical treatment disaster in the history of the NHS” were travelling by train on Friday 21st July 2022 when Hazel Blears gave her evidence to the Infected Blood Inquiry. Blears was a former Parliamentary Under – Secretary (Department of Health between 11th June 2001 and 13th June 2003. It was only after Blears gave evidence that the two were able to review the content of her testimony.
During the questioning by Katie Scott QC, a report was flagged up from the Hepatitis C Working Party which was set up by the Haemophilia Society in Sept 2001 and came up with proposals that the UK government should provide recompense for haemophiliacs infected with hepatitis C through their treatment with factor concentrates during the 1970s and 80s based on a Canadian model. Haemophiliacs infected with HIV through blood products used to treat their hereditary disorder where the blood does not clot sufficiently had already received “ex-gratia” payments in 1991 in an out of court settlement and also received ongoing monthly payments from the Macfarlane Trust. It is important to note that 99% of haemophiliacs with HIV were also coinfected with HCV but no money for this was included in the litigation agreement which contained a controversial hepatitis undertaking known as the “waiver” not to take action for infection with hepatitis viruses.
Grayson and her late husband Peter Longstaff were the first to access legal aid in the 1990s in an attempt to overcome this waiver in the hope of going to court to hold government to account for hepatitis C (and B if possible) using the HIV litigation documents that were never shown in court. Many of these documents held vital evidence not only on HIV but the dangers of hepatitis in pooled plasma known from at least the 1940s as documented in medical journals. (Though what was known by government and professionals differed considerably to what was known by haemophiliacs and their families.)
Grayson and Longstaff had a direct connection to the Hepatitis Working Party Report in that the Chairman was none other than Matt Kelly QC (Former head of the Bar Association) who was the barrister who had been approached for a legal opinion by the couple’s solicitor Denis Whalley on whether or not the waiver would stand legally and if “informed consent” was sought by Peter’s lawyers in 1991.
Grayson and Longstaff were alleging negligence by the UK government regarding his multiple viral infections and in addition unethical behaviour by the HIV lawyers in that key evidence on the dangers of both HIV and hepatitis were withheld from haemophiliacs at the time of the signing the waiver. They alleged that Peter had not been told he was hepatitis C positive so could not give “informed consent”. His medical records show he was not tested until 1992 and the result was withheld until 1994 when he was notified he was positive in the presence of Grayson (and without pre test counselling having taken place.)
Kelly had been notified that the couple were in conflict with the Haemophilia Society at that time whom they regarded as their enemy. Grayson and Longstaff made an initial visit to Chambers with Whalley where they had arranged for Kelly to receive and examine documents from the HIV litigation to back up their case. These included the Dr J Garrott Allen 1975 letter, the Oxford 1982, Rizza and Bloom “Cheaper than Chimps” letter and the 1983 Dr Spence Galbraith letter among others which the HIV litigation lawyers had never shown to clients regarding hepatitis risk and the later HIV risk and they highlighted that one of the lawyers had written in a note found by the couple in legal offices in Newcastle that “I can no longer lie to my clients”.
By the time they returned to Chambers on a second visit to hear Kelly’s legal opinion, much to their shock they learnt he was working with the Haemophilia Society that had argued to keep dangerous US products on the shelves when they should have been immediately withdrawn on the grounds of safety in May 1983. Grayson and Longstaff were horrified by Kelly’s actions and felt totally betrayed! Their expert witness Professor Eric Preston had also joined the Hepatitis C Working Party.
The subsequent report for financial assistance headed up by Kelly appears to have been a compromise to stop Longstaff from going to court as Kelly had concluded that the waiver could not have been “informed consent” and everyone but Pete knew of the dangers of hepatitis C when he signed the Undertaking.
On the first visit before Kelly had examined the HIV litigation evidence, he suggested Grayson might be mistaken as how could their lawyers behave as they did withholding key evidence regarding knowledge of risk especially when it was known to them back then that 99% of haemophiliacs infected with HIV were coinfected with HCV. On the 2nd visit to Kelly he had read the evidence and concluded Grayson was in fact correct though he did not appear too happy at what the couple had discovered.
Grayson and Longstaff knew if they were able to overturn the waiver they could then fight for compensation for hepatitis C using the original HIV litigation documents. They were concerned that Kelly was in fact engaged in “damage limitation” to protect the original HIV lawyers who were responsible for the waiver and in their own words lied to their clients! Kelly once said to the couple, did they realize that if they went to court they would be challenging 4 main medico- legal firms of that time… and what effect would that have regarding confidence in the system?
Grayson was so angry with Kelly that she sought legal advice with the then Office of Supervision of Solicitors (OSS) and was advised they had grounds for a complaint against Kelly through the relevant body that deals with barristers but Grayson was concerned as to who would believe her and Peter against the then Head of the Bar Association.
Grayson believed from the file of HIV litigation evidence shown to Kelly that it would have been difficult not to conclude that there had been alleged negligence on the part of government re infection with HIV/HCV and unethical behaviour on the part of their lawyers which may have influenced his decision to agree to head up the Hepatitis Working Party to gain some recompense for haemophiliacs? The last legal opinion from the HIV lawyers just before that case was settled in 1991 was never shown to their clients. The lawyers stated in writing between themselves that the chances of winning for those that had received US blood products had significantly increased as certain evidence not previously considered was examined, the problem was, time had almost run out. When the Hepatitis Working Party came to report in 2002, government were continuing their mantra that they wouldn’t pay compensation unless there was legal liability.
When questioned by Katie Scott QC on the Hepatitis C Working Party Report, Hazel Blear’s reluctance to consider recommendations for compensation made by Kelly and others was that it was based on the Canadian model where negligence had been found. Blears may have assumed Kelly had not seen anything that showed alleged negligence by authorities here, this author begs to differ.
Perhaps Blears was not then aware that UK haemophiliacs such as Longstaff had received some of the same Arkansas prison blood factor concentrates used on Canadian haemophiliacs. In 1998, Suzy Parker reported the following in Salon,
In a year when Arkansas scandals dating back to his governorship have returned to haunt Clinton, this one nearly toppled the government — of Canada. Arkansas’ prison-blood business created a health crisis in Canada that nearly brought down the Liberal Party government last spring. At least 42,000 Canadians have been infected with hepatitis C, and thousands more with the HIV virus, thanks to poorly screened plasma. Some of it has been traced back to the Cummins prison in Arkansas. More than 7,000 Canadians are expected to die as a result of the blood scandal.
and
More than 20,000 tainted-blood victims with hepatitis C filed a class-action suit against the Canadian government, alleging that sloppy screening protocols allowed tainted blood products from Arkansas prisons and elsewhere to make their way into Canada.
It was Mike McCarthy (a key campaigner in Canada) who assisted Grayson sometime in the late 1990s /early 2000s regarding evidence including sending her gay donor posters where the pharmaceutical companies were targeting homosexuals for their “hepatitis rich” plasma and then used the surplus to top up the plasma pools for factor concentrates. UK haemophiliacs were on the receiving end of this plasma collected from gay men coming out of the bath houses in the Tenderloin district of San Francisco when it was known AIDS had emerged and hepatitis B was a marker for AIDS in homosexual communities? Treatment unfit for US consumption proven via batch numbers was “dumped” on the UK. Longstaff was documented as receiving US prison blood AFTER the plasma centre at Arkansas State Penitentiary was closed down on the grounds of safety, the treatment was never recalled in the UK. The US pharma companies didn’t accept Peter and Colette’s legal cases and settle without good reason.
To return to the comments made by Blears at the Inquiry, she was certainly correct regarding negligence in Canada. The BBC highlighted on 20th April 2001 that,
Canada’s Supreme Court has found the Canadian Red Cross guilty of negligence for failing to screen blood donors effectively for HIV infection.
The court upheld a decision by the Ontario Court of Appeal that the organisation did not exercise a proper standard of care in collecting blood in 1983-85.
Three suits were brought against the Red Cross by people who received tainted blood. Two of them subsequently died of Aids and the third is HIV positive.
The article goes on to highlight that because there was no blood test for AIDS at that time, the Red Cross were reliant on screening of donors as the most effective way of preventing infection. The BBC piece continues as follows,
The court concluded after comparisons with US Red Cross pamphlets on screening that the equivalent Canadian pamphlets were not as clear or effective in deterring high-risk donors.
An American Red Cross pamphlet issued in March 1983 warned sexually active gay men against giving blood because they were in a high-risk group for contracting HIV infection.
It said that people might be carrying the virus even if they felt in good health.
The Canadian pamphlet, however, merely focused on whether the donor felt healthy.
In a twist of irony, Blears vehement rejection of any UK government negligence and liability and focus on Canada has in fact inadvertently drawn Grayson’s attention to a fundamental flaw with US screening. in terms of the collection of plasma linked to the pharma companies (as opposed to the Red Cross) that relied on prison blood at Arkansas State Penitentiary right up to 1992. This flaw affected UK haemophiliacs.
Grayson acknowledges the albeit delayed attempt of the pharmas and the CDC to screen out gay donors in 1983 in the US as highlighted in the Red Cross pamphlet. She notes the action taken in the UK to end the use of prison blood collected here and stop gay men from donating due to the risk of AIDS.
HOWEVER, one aspect was overlooked that the pharmas and CDC, FDA and other bodies had not fully considered regarding US prisons that seriously compromised safety and no doubt led to the continued infection of haemophiliacs AFTER a ban on gays donating. The ban did not take into account specific prison culture and therefore had limited effectiveness with regard to improving safety.
Grayson’s own professional work as a Senior Nurse Therapist in the 1980s included teaching prison and probation officers regarding AIDS prevention and she visited prisons to educate on safety and safe sexual practise. The regional unit where Grayson worked provided assessment of prisoners, court reports and support for those leaving the penal system.
As Grayson learnt from her own experience of visiting prisons, although some inmates openly admitted to being homosexual, other male prisoners would also have unprotected sex with other men, including known drug users, even rape them but they would never in a million years self-identify as being “gay”.
The so called “straight” guys in US prisons would resort to furtive sex in the showers or behind locked cell doors, seeing other men merely as a temporary fix, out of necessity, a convenient orifice in which to plant their penis or accommodate another man’s erection in the absence of a female partner. They were never going to self exclude from selling their plasma because that would label these macho guys as “queer” and also selling their blood for a few dollars secured the odd luxury item. So as long as prison plasma collection continued and the UK allowed factor concentrates made from US prison plasma to be imported, the risk of AIDS from men who had sex with men continued.
As Grayson understood having a qualification in Health Education… the language used in safe sex campaigns must be be straightforward language and terminology (explicit if required) which could be understood by the target audience. Although the Red Cross looked at gay donor behaviour, there were no warnings in prison leaflets for men who didn’t identify as gay but still participated in sex with men, no warnings for those who may be bisexual. It wasn’t just about excluding gay men but excluding ALL men who had sex with other men because of the HIV and hepatitis risk. There was also no consideration of the high level of male rape in US prisons which could spread deadly viruses.
In addition, even when heat treatment was introduced with factor concentrates, UK haemophiliacs were told to use up un heat- treated products including those manufactured with plasma from US prisons which could have a shelf life of up to 2 years before they would be given heat-treated products. So those haemophiliacs with factor concentrates in their home fridges could have injected themselves beyond 1985 leading to infection or reinfection with HIV and hepatitis C.
This article in the Washington Post (September 21st, 1980) highlights Arkansas State Penitentiary including torture and past sexual offences within Arkansas State Penitentiary in the late 1960s,
In the barracks, “convicts known as ‘creepers’ would slip from their beds to crawl along the floor, stalking sleeping enemies. In one 18-month period,” Stevens wrote, “there were 17 stabbings, all but one occurring in the barracks.
“homosexual rape was so common and uncontrolled that some potential victims dared not sleep; instead they would leave their beds and spend the night clinging to the bars nearest the guards’ station.”
the plasma program wasn’t the only source of scandal within the Arkansas prison system. In 1985 inmates began complaining loudly about prison medical care and rights abuses, including rape. That year Arkansas prisons had the highest number of inmate complaints of any state in the country. State Rep. Bobby Glover, a Democrat, became a champion for prisoners with stories of abuse. His office collected a raft of allegations, ranging from rape and other forms of abuse to bid rigging, theft of state property and the use of state property for private work and gambling.
Angola State Penitentiary was no different to Arkansas, the prison also collected plasma from prisoners for factor concentrates as highlighted in an Irish documentary made by journalist Paul Cunningham of RTE and as the Free Library highlighted, the prison magazine also documented rapes as mentioned below,
Another important positive event in the 1970s was the reorganization of The Angolite, the inmate published magazine of the penitentiary. Originally written and published by an all-white staff, its importance grew dramatically when Wilbert Rideau and Billy Wayne Sinclair became editors in the late 1970s. (258) Under their leadership the magazine became “a must read for corrections officials and prisoners’ rights groups across the world,” in the words of the New York Times. (259) The Angolite published exposes on prison rape, murders, executions, and the conditions inside the prison. In 1978, they won the American Bar Association Silver Gavel Award and the Robert F. Kennedy Journalism Award. (260) In 1979, Rideau and Sinclair received the George Polk Award in Journalism for Special Interest Reporting. (261) This publication, more than any other, exposed what life was like inside the penitentiary.
The document, Plasmapheresis Centers in Correctional Institutions, An Information Booklet (November 1984) which Grayson acquired recognizes that, “using prison blood is controversial within the plasma industry itself” but makes no specific mention of how prisons would deal with the issue of men who have sex with men (that may not identify as “gay”) the high levels of rape in prison and how that would be dealt with in terms of both plasma donor safety and safety of the plasma recipient.
It is extremely difficult to prohibit or monitor high-risk sexual activity in prison and no guarantee a prisoner will make a complaint if raped and self exclude from selling his plasma. What he buys with his blood for money fee might be the only small pleasure he gets and some prisoners were allegedly paid in drugs. Even with a physical examination to determine health it would be unlikely to include an anal examination and if an anal examination was included it might only indicate recent sexual activity not that of the past, prisoners might also lie to conceal rape.
One prisoner Bryson Martel (who also used the name Kendal Spruce) did testify to the National Prison Rape Elimination Commission, he was raped by 27 inmates in an Arkansas prison after being sentenced in 1991, this began a year before the Arkansas prison plasma programme ended and within 2 weeks of being detained,
Rewire News Group provided an update on Bryson in 2010 as follows,
Bryson, convicted of check fraud, was repeatedly raped and beaten in an Arkansas prison. As a result of those attacks, he walked out of prison with a death sentence — not handed down by a judge or jury, but by the corrections staff who failed to keep him safe; Bryson contracted HIV because of the rapes.
Last June, he died of AIDS-related illness. “I know I had to pay the price for what I did, but I’ve paid double the price,” said Bryson before his death. “That check I wrote cost me my life.”
It wasn’t until September 4th, 2003 that President George W Bush signed into law the Prison Rape Elimination Act (PREA). As Florida Department of Corrections stated,
It was created to eliminate sexual abuse in confinement facilities including adult prisons and jails, lockups, community confinement facilities and juvenile facilities. PREA includes forty-three (43) standards that define three clear goals, to prevent, detect and respond to sexual abuse.
As this 1st March, 2014 Independent article highlights even today little has changed regarding sex and rape in US prisons,
Sex in men’s prisons: ‘The US system cultivates rape. If you treat people like animals, they behave like it’
Human Rights Watch estimated in 2010 that 140,000 US inmates have been raped. Shaun Attwood has written three books on life inside and his latest, Prison Time, details the sex – consensual or otherwise – the prostitution, the pimping and the equal, loving relationships behind bars
So we should thanks Hazel Blears for adamantly highlighting the UK government’s “line to take! regarding compensation and inadvertently reminding this author of the Canadian comparisons and the flawed US pharma company plasma screening and collection which continued to compromise the safety of UK haemophiliacs just as happened in Canada. The Red Cross had leaflets for deterring donors outside of prisons but Blears made no mention of plasma collection within prisons that was used to make factor concentrates and exported to the UK. Even if there had been leaflets designed to warn against the viral risks of men having sex with men distributed in prisons…it is highly unlikely the rapes would have stopped. The words which fit here for allowing such dangerous products to be given to UK haemophiliacs including children are NEGLIGENCE and LIABILITY. It was not only US authorities than continued to allow Arkansas prison blood to be collected until 1992 but UK authorities were responsible for allowing imported factor concentrates to continue to be used on UK haemophiliacs long after Dr Spence Galbraith called for US blood products to be taken off the shelves as a matter of urgency due to the risk of AIDS in May 1983!
There were gross double standards by the British government as they stopped the use of prison blood here, banned gay men from donating reducing the viral risk but continued to allow those receiving US factor concentrates to be exposed to US prison blood where men continued to have sex with men and raped and were subject to brutal rape sometimes by multiple males thus increasing the risk of infection with AIDS and hepatitis viruses. Doctors also failed to withdraw old un heat treated products extending the period of possible exposure and infection. There is a certain irony that US prisoners were able to take legal cases for rape and infection with HIV, and the states failure to protect inmates from harm yet it was so much more difficult for haemophiliacs that received their infected blood.
During the early 2000s, Grayson and Longstaff made contact with US lawyers with the help of Canadian and US campaigners which led to their participation in the “dumped” treatment 2nd generation litigation where UK cases were included providing they could supply the relevant batch numbers which could then be traced to source. Longstaff was identified as having the blood of many prisoners including at least one inmate recorded as being HIV positive. The venue for the cases deemed however that the US courts were “forum non conveniens” (not the right place for the cases to be heard) with the UK authorities viewed as the first line of defence regarding “duty of care” for haemophiliacs. The case concluded with a token settlement agreement with 4 US plasma companies highlighting that UK haemophiliacs and their families could have their cases heard in British courts.
Way back in April 1966, Dr J Garrott Allen highlighted in California Medicine,
The risk of serum hepatitis from transfusions derived from prison and Skid Row populations is at least 10 times that from the use of volunteer donors. For every 100 patients receiving a single transfusion, the attack rate is 0.3 per cent when the donor is of the family or volunteer type and 3.2 per cent when the donor is from a prison or Skid Row population.
The most practical methods of reducing the hazard of serum hepatitis from blood are to limit the use of blood by giving one transfusion instead of two, two instead of three, etc., and especially by excluding, if possible, all prison and Skid Row donors.
It is urged that state and federal control of the quality of blood used for blood transfusions be studied with the possibility that measures may be taken to increase its safety. If it is necessary that blood from prison and Skid Row donors be used to meet the demands, such blood should be labeled as carrying a significantly increased hazard of transmitting serum hepatitis in order that the physician prescribing blood may take the necessary precautions.
Garrott Allen was quick to realize that putting factor concentrates onto the market made from pooled plasma without first finding a way to virally inactivate hepatitis was a recipe for disaster for the haemophilia community.
The British government cannot claim not to have been informed regarding the dangers of US prison blood. Dr J Garrot Allen wrote to Sir William Maycock on the 6th January 1975 warning of the increased risk of hepatitis in paid and prison donors which appears to have fallen on deaf ears.
To return to the so called “treatment” taken by Longstaff, a letter from documentary maker Kelly Duda to Stephen Grime QC who acted for Longstaff in his Judicial Review, High Court case where he fought for the right to be given recombinant synthetic treatment as opposed to human plasma, highlighted that in one batch alone he had received the plasma of “297 inmates from Arkansas and an undetermined number of convicts from Avon Park, Florida.” When Longstaff was on prophylaxis, he would take factor concentrates 3 times a week with additional treatment if he bled. Investigative journalist, Mara Leveritt wrote in her Arkansas Times (August 7th, 2007) article with Grayson which highlighted Longstaff tracing back treatment batch numbers to Arkansas prison, that,
In 1992, the year after the plasma program closed, Peter Longstaff tested positive for Hepatitis C. In March of that same year, as Clinton was running for president, his former chief of staff, Betsey Wright, sent a memo titled “prison positives.” That memo, a copy of which is in Roberts’ files, mentioned four points, including, “education into prison by bc.” But the first point Wright listed was: “Run cheapest system in country.”
In 1994, Longstaff and Grayson began their campaign to expose how tainted blood had been able to make its way into their country.
On 26th July 2002, Grayson submitted the following questions under Freedom of Information to the Department of Health and Social Care (with name and address supplied) as follows:
1) Under Freedom of Information what information, leaflets, safety advice, was given to UK haemophiliacs in the 1970s and 80s that received US factor concentrates manufactured from pooled prison plasma warning them of the high risks of taking these products?
2) When importing factor concentrates manufactured from US prison plasma what consideration was given to the high level of men who have unprotected sex with men in prison (who may not necessarily self identify as “gay”) and the high number of male rapes in prisons which may not necessarily be reported but could affect plasma safety if they donated?
3) What consideration was given to the potentially high risk of AIDS in US prisons when the government decided not to take Dr Spence Galbraith’s advice to withdraw US treatment from UK shelves in May 1983 and again given the high number of men who have sex with men often unprotected and the documentation of the high number of male rapes in US prisons which could affect plasma safety, bearing in mind also that some of these rapes would go unreported?
Longstanding campaigners often hear about the “moral” arguement for compensation in the Infected Blood Inquiry hearings. However the government’s “line to take” uttered time after time by ministers and civil servants, that there was no wrongdoing, no negligence and no liability regarding the infection of haemophiliacs would be comedic if the consequences weren’t so dire and with so much damning evidence presented, is frankly indefensible.
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”
Colette Wintle haemophilia campaigner who lost her nursing career as a result of hepatitis B infection outside Westminster with her husband who is also active in the campaign for justice and proper compensation (Image, Colette Wintle.)
When the privately funded Archer Inquiry concluded with a final report in 2009, Lord Archer of Sandwell recognized the importance of haemophiliacs being compensated for ALL viruses. The Inquiry was set up to investigate how thousands of haemophiliacs with an inherited blood clotting disorder became infected with multiple deadly viruses during the 1970s and 80s through their factor concentrate treatment.
Therefore, it was with some concern that this author Carol Grayson and her campaign colleague Colette Wintle noted what appeared to be largely an exclusion of hepatitis B regarding compensation from the recent report of Sir Robert Francis QC, titled, Compensation and redress for the victims of infected blood: recommendations for a framework (7th June, 2022). This can be read in full on the following UK government website,
Francis was asked questions on hepatitis B by Jenni Richards QC for the Infected Blood Inquiry which began in 2018 under the Chair of Sir Brian Langstaff and indicated that he had not received representations on hepatitis B from campaigners and their supporters.
This was certainly not the case from Grayson and Wintle who referred to hepatitis B in their written submission of issues to be included when looking at compensation. This was also discussed in a phone conference call between Sir Robert Francis and the two long standing activists on contaminated blood. They wrote the following within their document,
Quote,
Compensation for each infection and to partners/carers looking after those infected
Haemophiliacs and some of their partners and children were infected with deadly viruses and all were affected which caused immense physical harm and psychological damage.
Haemophiliacs were infected with multiple viruses, HIV and hepatitis B and C and as Lord Archer stated in his 2009 report must be compensated for each and every virus. We point out that hepatitis B infection can be a serious condition and had attention been paid to finding a way to virally inactivate hepatitis B BEFORE factor concentrates were put on to the market (even if that meant a delay) it would have also have had the effect of later eliminating hepatitis C and HIV, avoiding further infection.
We point out that when AIDS emerged there was no effective treatment so haemophiliacs had to live with the knowledge that they were being given a 5 year life expectancy and for many that turned out to be correct. Those who survived AIDS were suffering ever deteriorating health with little hope of leading a normal life. 99% of haemophiliacs with HIV were also co-infected with hepatitis C, and many had also had hepatitis B. Those who escaped HIV infection and had hepatitis C were often co-infected with hepatitis B.
In the early years, treatment given to treat HIV and hepatitis could also come with severe health risks and intolerance to treatment with regimes such as AZT and Interferon. It is only in more recent years that treatment has improved but the damage is already massive if not deadly for most.
As stated previously, co-infection makes treatment of a haemophiliac much more difficult. One example is that drugs taken for life to control the HIV virus may impact on the liver of a person with hepatitis C. Another example is that for years a person with hepatitis C was automatically denied any chance of a liver transplant due to having to take immune-suppressant drugs after transplantation. Many haemophiliacs died without hope of a transplant.
In addition, government and some doctors playing down the serious nature of infections which meant that there were often delays of years in referring haemophiliacs over to an infectious diseases ward and a specialist liver unit. Haemophiliacs had the stress of fighting for referrals that often came too late. In addition, there are different strains of HIV and different genotypes of hepatitis C some known to be much more virulent than others and this can cause further health and treatment related problems. The majority of haemophiliacs weren’t only infected once (which was bad enough) but for being reinfected almost every time they took treatment until heat -treatment was introduced so the impact on the immune system, liver and body in general is enormous.
When haemophiliacs inadvertently infected a family member if they had not been told they were positive, they then had to live with the impact on that person and the guilt.
Partners who cared for haemophiliacs had to take on a dual role of being both parents to children, father and mother as the infected person deteriorated. They took over many responsibilities that would have been shared with a healthy partner. They had to give up their own careers and aspirations and often cared for years 24/7 without support. This has led to many now suffering chronic physical health issues after their loved one died and relying on disability benefits.
Please read cases of both infected and affected submitted to the Inquiry for many different examples of the impact of living and dying with HIV and hepatitis viruses.
In an email to the Infected Blood Inquiry, Grayson wrote, “I wish to say emphatically that hepatitis B, reinfection, and exposure to v CJD featured in our presentation to Sir Robert Francis regarding compensation ( but if you recall he did not report the content of our meeting in his initial statement.)”
There had previously been an issue however of Sir Robert Francis not recording some of the meetings with campaigners and the themes discussed which was highlighted in an earlier blog (see below)
In addition to our submission including hepatitis B, articles specifically on hepatitis B were sent to David Kirkham at the Cabinet Office, for the attention of Sir Robert Francis. Francis was also sent a legal judgement on hepatitis B related to EIBBS with an article I wrote for my own blog regarding the importance of assessing haemophiliacs separately from whole blood for hepatitis B due to their infection with multiple viruses and including the issue of reinfection, coinfection and the impact of how multiple viruses interact with each other, the cumulative effect as below,
Grayson and Longstaff received an email reply from Kirkham stating, “thank you for passing this on. I have forwarded to Sir Robert, along with a copy of the full JR judgement, for his information.”
Articles sent by the pair included one called, Is there a cure for hepatitis B? (Medical News) where Grayson highlighted, HBV is fatal for thousands of people every year because of resulting liver damage. However, most people recover from HBV infection within a few months. (but these are people without co infection and without repeated reinfection in the way haemophiliacs were reinfected with factor concentrates).
Another point Grayson highlighted was the following,
Acute HBV can develop into chronic HBV. A person’s risk of developing chronic HBV is relative to the age at which they first developed the infection.
Then an article was submitted on the case of a man jailed for infecting a partner with hepatitis B . Grayson was interested to know where that might leave those that gave haemophiliacs factor concentrates as a so called “miracle treatment” KNOWING that there was an almost 100% infection risk from the first shot of factor concentrates. (US plasma pools could be as high as 400,000 donors). Warnings given in the 1960s in the US by hepatitis experts such as Dr J Garrott Allen regarding the dangers of factor concentrates were ignored by authorities in the UK who turned a blind eye to outbreaks amongst haemophiliacs in the US once factor concentrates were introduced there prior to licensing in the UK in 1973.
Part of the evidence from Grayson and Wintle was related to the topping up of plasma pools for factor concentrates with “hepatitis rich” plasma sourced from gay men in San Francisco targeted for research into hepatitis B. However the surplus was then added to the plasma pools as highlighted in US depositions. Hepatitis B was an early indicator of AIDS prior to a test being developed.
Wintle who received US factor concentrates during the 1970s and 80s and was sat watching Sir Robert Francis continue his evidence to the Inquiry for a second day stated,
The impact of hepatitis B on my life as a female haemophiliac was utterly devastating. Not only did I have to battle with my local GP for care when it became clear I was ill but my ultimate diagnosis fell to the keen observation of a colleague, a senior surgical registrar at work, who realized that I was severely jaundiced and clearly ill with hepatitis. I ultimately lost my nursing career and was forced out of work for 2 years. In addition, my sister who is herself a haemophiliac was in recovery from then non A non B hepatitis (infected via the same haematologist) was forced to take on my care because I had no other family members who could take care of me. I had no professional support whatsoever throughout that time. The damaging effect on my liver was aggravated by the fact that I had already been exposed to infected US products from America 10 years previously which meant I was dealing with a co infected diagnosis… A DOUBLE WHAMMY!
So in conclusion it is difficult to understand how Sir Robert Francis could claim he received no representations regarding compensation for hepatitis B. If he didn’t receive representations then why not? If he did receive representation, then why is this not mentioned?… If his memory is so poor that he has forgotten that he was sent representation on hepatitis B, then it doesn’t bode well for the rest of his work on contaminated blood compensation proposals. What other omissions might there be that could have been overlooked?
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”.
Émilie Jaumain in 2010, the year she was exposed to prions during a lab accident. She died in 2019 at age 33. (Image ARMEL HOUEL via Science)
Earlier this year, experts on variant Creutzfeldt-Jakob Disease (v CJD) gave evidence at the Infected Blood Inquiry in relation to haemophiliacs with an inherited bleeding disorder who were exposed to the prion disease through administration of UK factor concentrate treatment, injected into their veins to prevent and stop bleeding episodes. Haemophiliacs were infected with HIV and hepatitis viruses in the 1970 and 80s which is the main focus of this inquiry however v CJD is also being investigated.
The Inquiry heard from Professor John Collinge, Professor of Neurology and Head of the Department of Neurodegenerative Disease at the UCL Institute of Neurology who is also director of the UK Medical Research Council’s Prion Unit. In addition, Professor James Ironside, Emeritus Professor at the Centre for Clinical Brain Sciences at the University of Edinburgh who was made Commander of the British Empire (CBE) for Services to Medicine and Healthcare in 2006 also testified.
Back in May 2009, the Independent reported,
More than 800 people with haemophilia have received contaminated blood products putting them at heightened risk of developing vCJD, the Government has disclosed for the first time.
The figures were revealed in a parliamentary answer from Lord Darzi, a Health minister, following the death of a haemophiliac who had received infected blood products. A post-mortem examination on the man, who was in his seventies when he died last November, revealed traces of variant Creutzfeldt-Jakob disease (vCJD) in his spleen, although his death was due to an unrelated cause.
The development has increased the likelihood that haemophiliacs who received infected blood could develop the brain disease, Chris James, chief executive of the Haemophilia Society, said yesterday. The CJD Incidents Panel is to consider the implications of the finding at its meeting today.
“It now looks like there is a real possibility of a link between receiving blood products and developing vCJD. What was a theoretical risk is now a suspected causal link. That has raised the threat for other haemophiliacs who may have dismissed it,” Mr James said.
The complete article can be read on the following link:-
On the 3rd August 2021, The European Centre for Prevention and Control published its Risk Assessment, titled, The risk of variant Creutzfeld disease transmitted via blood and plasma- derived medicinal products manufactured from donations obtained in the United Kingdom which can be read here:
However, this author spotted an article in Science just days earlier titled, France issues moratorium on prion research after fatal brain disease strikes two lab workers (28th July 2021) which does not appear to have been considered in the publication. References to France in the European Centre report from page 8 onwards are focused specifically on blood donors and recipients as this example demonstrates,
In France, three patients that developed signs of vCJD in 2004 and 2005 were blood donors. A total of 42 recipients of blood components donated by these donors were identified, with 17 recipients still alive in 2006 [125]. The most recent vCJD case with blood donation history was reported in Italy in 2016 (Figure 3).
What chilled this author was an introduction in Science regarding lab accidents where workers were exposed to CJD as follows,
PARIS—Five public research institutions in France have imposed a 3-month moratorium on the study of prions—a class of misfolding, infectious proteins that cause fatal brain diseases—after a retired lab worker who handled prions in the past was diagnosed with Creutzfeldt-Jakob disease (CJD), the most common prion disease in humans. An investigation is underway to find out whether the patient, who worked at a lab run by the National Research Institute for Agriculture, Food and Environment (INRAE), contracted the disease on the job.
If so, it would be the second such case in France in the past few years. In June 2019, an INRAE lab worker named Émilie Jaumain died at age 33, 10 years after pricking her thumb during an experiment with prion-infected mice. Her family is now suing INRAE for manslaughter and endangering life; her illness had already led to tightened safety measures at French prion labs.
What is disturbing is that lab worker Émilie Jaumain appears to have been infected during her daily activities and the implications for haemophiliacs. This further significant passage is likely to worry haemophiliacs,
In Jaumain’s case, there is little doubt she was infected on the job, according to a paper published in The New England Journal of Medicine (NEJM) in 2020. She had variant CJD (vCJD), a form typically caused by eating beef contaminated with bovine spongiform encephalopathy (BSE), or mad cow disease. But Europe’s BSE outbreak ended after 2000 and vCJD virtually disappeared; the chance that someone of Jaumain’s age in France would contract food-borne vCJD is “negligible or non-existent,” according to the paper.
It is noted that the skin was broken and drew blood. Two further passage state,
For Jaumain, who worked at INRAE’s Molecular Virology and Immunology Unit in Jouy-en-Josas, outside Paris, that long period of uncertainty began on 31 May 2010, when she stabbed her left thumb with a curved forceps while cleaning a cryostat—a machine that can cut tissues at very low temperatures—that she used to slice brain sections from transgenic mice infected with a sheep-adapted form of BSE. She pierced two layers of latex gloves and drew blood. “Émilie started worrying about the accident as soon as it had happened, and mentioned it to every doctor she saw,” says her widower, Armel Houel.
In November 2017, Jaumain developed a burning pain in her right shoulder and neck that worsened and spread to the right half of her body over the following 6 months, according to the NEJM paper. In January 2019, she became depressed and anxious, suffering memory impairment and hallucinations. “It was a descent into hell,” Houel says. She was diagnosed with “probable vCJD” in mid-March of that year and died 3 months later. A postmortem confirmed the diagnosis.
So to sum up, a lab worker had an accident at work and had direct exposure between infected material and a cut which drew blood. Haemophiliacs had the blood of multiple blood donors infected with the prion disease v CJD injected directly into their veins. Surely these 2 lab worker cases must raise concerns regarding infected material/blood entering the body and directly causing prion infection?
Here is the remainder of the article which surely has implications for haemophiliacs especially as the incubation period is much longer than was first realized and could be decades before infection becomes apparent. Why weren’t these French cases mentioned in the European report? Also in addition an Italian lab worker died of v CJD in 2016 as highlighted below.
INRAE only recently admitted the likely link between Jaumain’s illness and the accident. “We recognize, without ambiguity, the hypothesis of a correlation between Emilie Jaumain-Houel’s accident … and her infection with vCJD,” INRAE chair and CEO Philippe Mauguin wrote in a 24 June letter to an association created by friends and colleagues to publicize Jaumain’s case and lobby for improvements in lab safety. (Science has obtained a copy of the letter, which has not been made public.)
Jaumain’s family has filed both criminal charges and an administrative suit against INRAE, alleging a range of problems at Jaumain’s lab. She had not been trained in handling dangerous prions or responding to accidents and did not wear both metal mesh and surgical gloves, as she was supposed to, says Julien Bensimhon, the family’s lawyer. The thumb should have been soaked in a bleach solution immediately, which did not happen, Bensimhon adds.
Independent reports by a company specializing in occupational safety and by government inspectors have found no safety violations at the lab; one of them said there was a “strong culture” of risk management. (Bensimhon calls the reports “biased.”)
The government inspectors’ report concluded that Jaumain’s accident was not unique, however. There had been at least 17 accidents among the 100 or so scientists and technicians in France working with prions in the previous decade, five of whom stabbed or cut themselves with contaminated syringes or blades. Another technician at the same lab had a fingerprick accident with prions in 2005, but has not developed vCJD symptoms so far, Bensimhon says. “It is shocking that no precautionary measures were taken then to ensure such an accident never happened again,” he says.
In Italy, too, the last person to die of vCJD, in 2016, was a lab worker with exposure to prion-infected brain tissue, according to last year’s NEJM paper, although an investigation did not find evidence of a lab accident. That patient and the lab they worked at have not been identified.
After Jaumain’s diagnosis, “We contacted all the research prion labs in France to suggest they check their safety procedures and remind staff about the importance of respecting them,” says Stéphane Haïk, a neuroscientist at the Paris Brain Institute at Pitié-Salpêtrière Hospital who helped diagnose Jaumain and is the corresponding author on the paper. Many labs tightened procedures, according to the government inspectors’ report, for instance by introducing plastic scissors and scalpels, which are disposable and less sharp, and bite and cut-resistant gloves. A team of experts from the five research agencies is due to submit proposals for a guide to good practice in prion research to the French government at the end of this year.
The scientific community has long recognized that handling prions is dangerous and an occupational risk for neuropathologists, says neuropathologist Adriano Aguzzi of the University of Zurich. Aguzzi declined to comment on the French CJD cases, but told Science his lab never handles human or bovine prions for research purposes, only for diagnostics. “We conduct research only on mouse-adapted sheep prions, which have never been shown to be infectious to humans,” Aguzzi says. In a 2011 paper, his team reported that prions can spread through aerosols, at least in mice, which “may warrant re-thinking on prion biosafety guidelines in research and diagnostic laboratories,” they wrote. Aguzzi says he was “totally shocked” by the finding and introduced safety measures to prevent aerosol spread at his own lab, but the paper drew little attention elsewhere.
The moratorium will “obviously” cause delays in research, but given the very long incubation periods in prion diseases, the impact of a 3-month hiatus will be limited, Comoy says. His research team at CEA also works on other neurodegenerative diseases, including Alzheimer’s disease and Parkinson’s disease, and will shift some of its efforts to those.
Although Jaumain’s diagnosis upset many in the field, it hasn’t led to an exodus among researchers in France, Haïk says: “I know of only one person who resigned because they were so worried.”
Robert Herriman, a microbiologist who hosts Outbreak News can be viewed discussing the Émilie Jaumain case on the video link below,
The recent report on compensation for those who received Contaminated Blood, Compensation and redress for the victims of infected blood: recommendations for a framework published on the 7th June 2022 suggests that no compensation will be paid for exposure to v CJD and that anyone that develops symptoms will then have to access the government CJD fund. As yet however there is no test available for haemophiliacs who must live with the daily fear that they might develop the prion disease at any time. The recent lab infection cases suggest CJD might be more of a risk than haemophiliacs are currently being told… and lets face it, they have been there before with the playing down of hepatitis risks!
This is also of great concern to the partners and carers who looked after haemophiliacs and may also have been exposed to their blood. For years, government and local health authorities failed to provide safety guidelines for those in the community despite strict safety guidelines being applied in hospitals to protect staff in the work environment. Prions are much harder to kill than the HIV or hepatitis viruses and conflicting advice was given on what to do with bloody laundry if at all as this author discovered and highlighted in an earlier blog.
Once again this flags up haemophiliacs as a unique patient group due to the multiple viral infections they were given through their treatment including HIV and hepatitis viruses and exposure to prions, the fact that haemophiliacs were re infected through the use of large plasma pools (up to 400,000 donors with US plasma pools) and the infection of multiple family members that had haemophilia plus partners and children were sometimes infected also. This is a very different scenario to that of other individual patients without an inherited bleeding disorder.
Government must now recognize the psychological distress ALREADY caused to haemophiliacs with v CJD exposure on which this author has written earlier and pay compensation for over 2 decades of unresolved fear that exposure to v CJD may at some point lead to incubation and having to deal with the many symptoms of an horrific prion disease. Yes if they develop the disease they can apply to the CJD Trust and government must address now the additional stress that haemophiliacs are NOW living with, without relief and no test yet to change that position.
There is one case of a payment being made for psychological harm in the case of a doctor with a needle stick injury and fear of HIV exposure. However in her case she received compensation for stress despite the fact that in her case, there was a test for HIV, she was found not to be infected and could gain relief and return to work, even if not the same work. The case can be read here,
£465,000 Compensation Payout For A Syringe Needle-Stick Injury / Infection? – Case Study
So where does that leave current blood safety with regards to vCJD. Government have recently revised guidelines re v CJD and blood. Can we be certain though that the experts have factored in all the relevant data and safety information or is our blood supply again at risk?
Here is the latest update from government,
Research and analysis
Creutzfeldt-Jakob disease (CJD) update (data to end of December 2021)
It is important to continue to ask questions regarding blood safety, experience has warned us government made many mistakes on blood safety in the past and we can not assume lessons have always been learnt in the present or for the future.
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”
Haemophiliac Peter Longstaff just before his death due to alleged negligence after receiving contaminated factor concentrate treatment from the highest risk sources (Image, Newcastle Journal, “Bad Blood” campaign)
Dear Kate (Burt)
Yesterday Baroness Virginia Bottomley gave evidence to the Infected Blood Inquiry as Minister of State (1989-1992) and Secretary of State for Health (1992-1995). The Haemophilia Society Public Inquiry Team Account on Twitter tweeted,
Baroness Bottomley said in her ‘humble view’ there was no negligence involved in the contaminated blood scandal. She said: ‘If treatment is given in good faith according to the best scientific advice at the time, then it is not negligent.’
As a long standing haemophilia campaigner with whom the APPG for Haemophilia and Contaminated Blood refuses to engage and has indeed been blocked by Dame Diana Johnson MP, I am appalled that Sir Peter Bottomley (current Father of the House) was ever allowed to sit on the APPG, given the role of his wife regarding the haemophilia litigation of 1991, defending the government’s “no negligence” stance. It is a total “conflict of interest”. I have gone back through Bottomley’s Twitter account in recent months and find it most odd that although he tweets on other key issues, such as Windrush and Ukraine, there is nothing on Contaminated Blood especially given we are now in the midst of the Infected Blood Inquiry set up under the Chair of Sir Brian Langstaff?
I wish to notify the Haemophilia Society officially that following a meeting fellow campaigner, Colette Wintle and I had with Anne Milton (Health) at Westminster in 2010 the word “inadvertent” infection was removed from use regarding the infection of haemophiliacs with HIV and hepatitis C in the 1970s and 80s as totally inappropriate. Inadvertent means, “done, or happening unintentionally” according to the Cambridge dictionary. This was minuted and Anne agreed the minutes were accurate and that we could use them. What happened to haemophiliacs was no accident, rather a series of disastrous decisions and errors and is allegedly due to the “negligence of public bodies.” As Andy Burnham (Former Secretary of State for Health) highlighted, this is also “a criminal cover-up on an industrial scale.”
It is untenable that Sir Peter Bottomley remains on the APPG when his wife is maintaining her stance of “no negligence” DESPITE the removal of the word “inadvertent” infection, 12 years ago. The Inquiry has been shown document after document detailing serious safety violations regarding factor concentrates from the 1991 HIV litigation, multiple other sources and including US legal depositions. Indeed Colette and my late husband Pete were part of the “dumped” treatment cases. My husband received factor concentrates manufactured from the plasma of Arkansas donors AFTER the plasma centre was closed down on the grounds of safety and this treatment was NEVER withdrawn in the UK. Pete’s batch numbers were traced back to source and an HIV infected donor was identified through US lawyers. This was just one of many gross safety violations.
If the APPG was truly sincere in fighting for justice for the haemophilia community, it would have engaged and worked jointly with those haemophilia campaigners fighting for over 3 decades that hold key evidence not just those that either hold little evidence themselves or are intent on rehashing my earlier research evidence as new, creating false timelines of discovery and distracting away from truth and justice.
In the past, the (then) Haemophilia Society made some gross errors which will have no doubt contributed to the death of its members. The most obvious being the fight to keep US plasma on the shelves in the UK at a time when Dr Spence Galbraith (Public Health Laboratory Service) was pleading with government officials that this must be immediately withdrawn due to the risk of AIDS. As someone he trusted and with whom he shared his documents, phone calls and was invited to visit him at his home, I can say that this haunted him until the day he died.
As you know I make a distinction between the Haemophilia Society today that is working hard to support its membership and campaigners and the Society of old.
The Haemophilia Society Public Inquiry Team account also tweeted, yesterday,
Baroness Bottomley said: ‘We could not accept liability if treatment is given according to the science at the time and in good faith, as tragic as it is.’
Let me address this issue once again. Baroness Bottomley appears unaware that in the 1960s, the pharmaceutical companies were WARNED of the dangers of pooled plasma which had already been known for decades. They were WARNED by experts including Dr J Garrott Allen that to put factor concentrates on the market without first finding a way to eliminate hepatitis viruses would be catastrophic for haemophiliacs. It was done the wrong way round!
First you invest in the technology, (and if you haven’t yet developed it, you must delay your product) as safety comes before profit. Then when you are satisfied you have the technology to remove deadly viruses you put your product on the market. We were not talking of a product such as cryoprecipitate made from a handful of volunteer donors here but a product manufactured from US plasma pools that were to reach as high as 400,000 paid “high-risk” donors. These included skid-row donors, drunks and drug addicts in Central America where they were over-bled so much, the donors themselves collapsed from weakness and ill health., their bodies depleted of vital nutrients.
Then there were the prison donors with a whole catalogue of safety violations such as falsifying names of prisoners known to have hepatitis using names from an Arkansas telephone directory so they could sell their infected blood.
In addition, there was the targeting of gay men coming out of the bath houses in San Francisco’s Tenderloin district for their “hepatitis rich” plasma for research into hepatitis B, then using the surplus to top up the factor concentrate plasma pools. Hepatitis B was used as a market for AIDS in gay men before testing became available. Just 3 of many examples.
Lets consider another historical example outside of haemophilia and factor concentrates… Supposing a company wanted to put a plane onto the market for commercial journeys in the early days of aviation and they said, we want passengers to fly with us but we don’t yet have the technology to keep a plane up in the air for the entirety of your journey….and there is a 99% chance the plane will drop out of the sky and the majority of those flying will be severely injured or die on route. It would be viewed as absolute madness and criminal to attempt such a journey with commercial passengers.
Yet this is what happened with haemophiliacs and pooled plasma in the form of commercial factor concentrates. Haemophiliacs were experimented on in unethical trials, not told of the huge risk of viral infection or where plasma was being sourced. Quite the opposite, my late husband’s parents were informed in writing in 1973 by the treating haematologist Dr Peter Jones, that the new factor concentrate treatment “could do nothing but good for the boys and for other patients.”
The arguement that haemophiliacs would have died without factor concentrates does not stand. Once cryoprecipitate was introduced, life expectancy for haemophiliacs was not far off from the average life expectancy of a person without haemophilia in the general population. It may not have been the most convenient of treatment but it did work for most.
My husband Pete and brother in law Stephen were killed as a result of the viruses contained in factor concentrates highlighted on their death certificates. Haemophiliacs were given a product made from pooled plasma that hepatitis experts had warned the pharmaceutical companies in the 1960s was guaranteed to infect them, with an almost 100% hepatitis infection rate, let alone the likelihood of new and unknown viruses emerging. What was done to haemophiliacs was dangerous and allegedly criminal and that is why there are so many dead and still dying as a result of their treatment!
We cannot have MPs and others sitting on the APPG that still think the infection of haemophiliacs was “inadvertent” infection…it is monstrous! This is an opportunity for the Haemophilia Society to help make amends for past mistakes. The APPG must make a public statement that all their members acknowledge and support this change of narrative from 2010 or I ask that the Haemophilia Society pull their secretariat from the APPG. We cannot go back over and must move forward.
I challenge the Society also to find one public reference to my multi awarded research on Contaminated Blood by the APPG… surely if they truly support the rights of haemophiliacs, they would wish to engage with those that hold the actual evidence of safety violations and abuses against haemophiliacs… or is this group engaged in yet another “damage limitation” exercise maintaining the lies of successive governments over decades?
We must not forget the late Lord Morris of Manchester (First Minister for Disabled) and past President of the Haemophilia Society who worked tirelessly WITH campaigners, shoulder to shoulder, side by side for years, in fact the result of that is documented in past copies of Hansard as he would ring Colette and I to help brief him on updates before any debate. When he died, the APPG was taken over by those who seem determined to obliterate the work of the long standing campaigners that kept the Contaminated Blood campaign going for decades. It is the most bizarre of circumstances!
I look forward to your prompt response and thank-you for your ongoing support to those infected and affected as a result of the Contaminated Blood scandal.
With thanks
Kind Regards
Carol Grayson (Haemophilia Action UK
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”
Jeremy Hunt apologizes for using the word “compensation” in his letter to my MP Nick Brown dated 15th Dec 2016
For haemophilia campaigners that were active on contaminated blood in the 1990s, they will not have forgotten why the word “compensation” is so important and has itself become a verbal battle ground with government.
Haemophiliacs were infected with HIV and hepatitis viruses in the 1970s and 80s when unscrupulous plasma companies and governments introduced the use of pooled plasma factor concentrates KNOWN to be “high-risk” for hepatitis without first finding a way to virally inactivate… a recipe for disaster as predicted by Dr J Garrott Allen in the 1960s. There was a significant increase in hepatitis risk from paid donors in the US compared to UK volunteer donors.
At the conclusion of the 1991 HIV litigation, the government made lump sums payments to haemophiliacs with an inherited bleeding disorder and infected with HIV and named this financial support, “ex-gratia payments”. Further “ex-gratia” payments were made in 2004 through the Skipton Fund for hepatitis C infection. These payments now come under the English Infected Blood Support Scheme (EIBSS) and its equivalent in other parts of the UK.
If MPs or new campaigners ever wrote to government accidently referring to these ex -gratia payments as compensation, they would be politely reprimanded in writing that the government would never use this word as to use it would be to admit liability.
This author once received an apology from Jeremy Hunt (former Secretary of State for Health) after he used the word compensation to refer to ex-gratia payments and I asked if government was now accepting liability.
Here is the definition of the word compensation according to the Oxford Dictionary means…
“something, typically money, awarded to someone in recognition of loss, suffering, or injury” …
As the government has been so adamant in its stance for the past 3 decades, it seems that the sudden inclusion of the word “compensation” can only be an admittance towards the state’s liability for the infection of haemophiliacs… and rightly so.
I rather suspect however that a comment made on the word compensation today by former Prime Minister, Sir John Major at the Infected Blood Inquiry suggests he seems rather less keen to use this word where haemophiliacs are concerned. Too late, John… we are not letting go of the word “compensation” this time! So thank-you to government for using the word in the recent Francis study and in so doing finally accepting liability… government can’t have it all ways!
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”
Carol Anne Grayson (Radical Sister) blog 