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.
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.”
Again Parker pointed out in Salon that,
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”