Peter Longstaff hold up his treatment cards showing what was recorded each time a haemophiliac took factor 8 treatment.

(Image, Grayson Archives)

The infection of Dame Anita Roddick with hepatitis C (who founded the Body Shop championing ethical standards in beauty products) has for many years been reported as a “transfusion” case during childbirth as opposed to infection via treatment with manufactured blood products such as factor concentrates. In the Sussex Express, a tribute from Prime Minister, Gordon Brown referred to Roddick, who died in 2007 of a brain haemorrhage and had cirrhosis of the liver, as “one of this country’s ‘true pioneers'”. He stated, “she campaigned for green issues for many years before it became fashionable to do so and inspired millions to the cause by bringing sustainable products to a mass market.”

Looking into the background of Roddick’s infection, back on the 15th February 2007, the Guardian reported,

Dame Anita Roddick, the founder of the Body Shop, revealed yesterday that she is carrying hepatitis C and has cirrhosis of the liver, one of the condition’s long-term effects. The 64-year-old entrepreneur said she had contracted hepatitis C through a blood transfusion while giving birth to her youngest daughter, Sam, in 1971.

So it was with some surprise that the author of this blog Carol Grayson heard a recent podcast with Caroline Wheeler author of the newly released book, Death in the Blood: The inside story of the NHS infected blood scandal, where it was suddenly alleged Roddick’s infection came from factor 8 concentrates.

The podcast can be heard here,

https://podfollow.com/1649210131/episode/90c07b9e7c62feed8af03d429feaf788bf739479/view

The Evening Standard reported,

Dame Anita contracted the disease from a transfusion of contaminated blood, 20 years before a national blood screening programme for the virus was introduced in 1991.

The article highlights Roddick saying,

“I am not angry, there was no blood screening programme for hepatitis C until 1991, but what bugs me is the Government’s conspicuous absence on this subject, they are not doing anything about it,”

This comment in itself is significant as it indicates Roddick was referring to a whole blood transfusion rather than blood products. She is referring to the date when blood was first tested for hepatitis C to avoid transmission of the virus via whole blood. With regard to those infected through factor concentrate treatment such as haemophiliacs with an inherited blood clotting disorder, they refer to the date when blood products were first heat treated to kill off hepatitis C and HIV and this was 1984. (The date is later in Scotland due to methods used which were not as effective.) Government and medical journal sources and numerous books have confirmed whole blood was never imported. It would have been too impractical to do so and had a much shorter shelf life than concentrates however factor concentrate treatment was imported from the US in large quantities with the first product licences granted in 1973.

The date given regarding Roddick’s infection is 1971. There are instances of haemophiliacs being given imported factor concentrates in 1972 including Grayson’s husband Peter Longstaff but this was usually on a “named patient basis” on application and for those on treatment trials. Longstaff attended a special school for children with disabilities named Lord Mayor Treloar College. He was on treatment trials in the early 1970s as his official records show and the college has a treatment centre at the school. Longstaff was infected with HIV, hepatitis B and C and exposed to variant CJD all through his treatment with factor 8 products. Roddick never mentioned having any clotting disorder. It is likely she was treated either at an Accident and Emergency Unit or a maternity hospital or unit. As she was treated for bleeding in relation to childbirth it is highly unlikely there would be time for a named patient basis application.

With regard to treatment with UK factor concentrates, the now disgraced, Department of Health Self Sufficiency Report 2006, deemed a “whitewash” and withdrawn on the evidence of this author, does mention some very early NHS factor concentrates being produced, “in the UK, NHS factor VIII concentrate was being produced as early as 1969, and its production rose steadily, almost doubling between 1976 and 1977” however haemophiliacs that were the biggest users of this treatment mostly remained on cryoprecipitate until 1973 and importation began, unless they were part of UK treatment trials on a named patient basis. The other treatments at that time were Fresh Frozen Plasma (FFP) or Cryoprecipitate from the UK. The 1971 treatment is the only treatment date referred to by Roddick herself when she discusses her infection.

This 1971 date is echoed by her daughter in an interview with BBC Newsnight where again she refers to a blood “transfusion”.

For the last few years, the mixing together of two entirely separate cases haemopohlia and whole blood in the media, and the Infected Blood Inquiry set up in 2018 to investigate how patients were infected have caused much confusion in people. The two groups campaigned separately for years as the Haemophilia Society doesn’t have a legal remit beyond inherited bleeding disorders and the Hepatitis C Trust covers whole blood cases. The circumstances and evidence around haemophilia and whole blood are very different. In some cases more recently the two have campaigned together but the joining together has increased the confusion and in some cases caused great damage due to the mix up of cases where for example people infected through whole blood transfusions have wrongly stated they had received US blood. This is highly distressing for haemophiliacs that actually did have factor concentrates and launched cases in the US in the early 2000s.

In 2017, I read interviews with Roddick’s daughter who appeared to be confusing the two. I did leave messages via the publications publishing her story to try to explain the differences. In one 2017 BBC Newsnight interview she can be heard discussing a blood transfusion responsible for her mother’s infection (not factor concentrate treatment) then when asked who is to blame naming the pharmaceutical companies. If Roddick had a whole blood transfusion, the blame would lay with authorities in the UK such as the National Blood Transfusion Service not pharma companies.

BBC Newsnight interview 31st July 2017

https://www.google.com/search?q=anita+roddick++hepatitis+c&sca_esv=567570395&rlz=1C1CHBF_en-GBGB947GB947&biw=1536&bih=715&tbm=vid&ei=vnYNZY-8FsabhbIP87OIyAo&ved=0ahUKEwiPk4mJi76BAxXGTUEAHfMZAqk4ChDh1QMIDQ&uact=5&oq=anita+roddick++hepatitis+c&gs_lp=Eg1nd3Mtd2l6LXZpZGVvIhphbml0YSByb2RkaWNrICBoZXBhdGl0aXMgYzIFEAAYogQyCBAAGIkFGKIEMgUQABiiBEjIJ1CnCFjvEnAAeACQAQCYAYIBoAGjBqoBAzcuM7gBA8gBAPgBAcICBBAhGAqIBgE&sclient=gws-wiz-video#fpstate=ive&vld=cid:568bf0e9,vid:0ADzQp-7ubo,st:0

If Roddick had factor concentrates that should be recorded in her medical or treatment records, this was necessary in case urgent product recalls needed to be carried out. There are a number of other potential risks related to manufactured treatment such as bacterial contaminant getting into a bottle which occasionally occurred. For haemophiliacs this recording was done on a green card system and included the following,

1. Name and Date of Birth of patient
2. Date and Time treatment is given
3. Name of product such as Hemofil
4. Name of company such as Baxter/Hyland
5. Batch Number plus HT if heat treated
6. Expiry Date of Treatment
7. Site and type of bleed such knee bleed into joint
8. Amount of factor concentrate given
9. Signed by person giving treatment
10. This was in case of an adverse clinical reaction, development of inhibitors, recall by the company

These batch number treatment details appear to have sometimes been kept separate to the medical records. If Roddick has been infected with factor 8 products presumably Wheeler, as an investigative journalist and author will have asked to see records of batch numbers to verify this or medical notes within Roddick’s records that specificly state the use of factor concentrates, what dosage, how many units etc. Concentrates come in small glass bottles containing a white powder (freeze died concentrates) and are mixed with sterile water for injection into a vein. Grayson has been through this process herself when asked to verify her husband’s treatment for journalists covering his story of infection.

Also it is important to state that the notes of a person with a lifelong medical condition such as a blood clotting disorder are usually kept for several years after death. Grayson has included a photo of her late husband displaying a photocopy of one of these treatment cards needed for litigation in the US so his treatment could be traced back to source (such as a US prison). Longstaff’s lawyers confirmed to the couple and the BBC that he had received factor concentrate products where a named HIV infected donor had sold his blood at Arkansas State Penitentiary. Longstaff received the treatment AFTER the prison plasma centre was closed down on the grounds of safety. This treatment was part of the “dumped” treatment second generation litigation. The pharmas accepted Longstaff’s case and others and an agreement was reached with a silence clause some years ago with the bulk of the responsibility put firmly at the feet of the UK government as having first line “duty of care” regarding treatment safety.

Stuart Mclean who became infected with hepatitis C after being wrongly misdiagnosed as a haemophiliac and treated with factor concentrates also wants to understand why it is suddenly being claimed Roddick had factor 8 when there has been no reference to this before. He also pointed to a 2017 video interview with Roddick’s daughter highlighting her mother’s infection via a blood transfusion. McLean noted a publication stating that Roddick’s youngest daughter Sam was born in Rustington in the UK, so she had been in the UK when giving birth (as opposed to being treated abroad.)

Sam Roddick was born on July 1, 1971 in Rustington, Sussex, England, UK

https://www.imdb.com/name/nm3045956/bio/

Mclean had requested confirmation of batch numbers via his wife, pointing out dates of when factor concentrates were first used in the UK which challenged the Wheeler podcast narrative and the statement claiming factor 8 was used. At that point Wheeler made it clear she wished to end the contact without providing any evidence.

Roddick dedicated her time to the Hepatitis C Trust, where she was a Patron and was an inspiration to others that were infected with hepatitis C through blood transfusion whilst pregnant and is mentioned in several statements to the Infected Blood Inquiry.

Roddick struck Grayson as a woman to whom truth and justice was very important on so many issues and felt a strong connection to many of her causes. Grayson was a regular customer at the Bodyshop and still misses the Woody Sandalwood oil which reminded her so much of trips to India. She feels for her daughter Sam and understands the importance of having the correct information and evidence with regard to the death of a loved one. Grayson lost her husband and brother in law and Roddick’s daughter lost her mum. The truth and establishing the correct evidence regarding how Roddick came to be infected with hepatitis C must surely be the goal of the family.

Grayson has questioned Wheeler before by email over her reporting, in one case where Grayson’s old evidence was being presented as “new” .When she made challenges to several publications, in a consortium, the word “new” was removed as incorrect. Evidence that had been published before well known to this author was clearly being rehashed. Grayson and her campaign colleague Colette Wintle were also concerned over recent Sunday feature articles on Contaminated Blood that were confusing and poorly written, An opinion shared by others reading the articles including one lawyer..

Anyone writing a book, article, dissertation must be prepared to be challenged, questioned and defend their work. It is part of the process of learning. Therefore as the Roddick case is in the public domain Grayson challenges Wheeler to provide evidence of her claims that Roddick had factor 8 concentrates. This doesn’t have to be put into the press but can be sent to Grayson privately or her lawyer Milners. Otherwise in the absence of evidence with the only information provided stating Roddick had a blood transfusion then that is all people can state regarding her case.

If Grayson is incorrect and batch numbers of factor 8 are provided as in the case of her own husband, she will hold up her hands and accept this. For Grayson this would mean Roddick’s case is considered with the correct evidence, she herself will have learnt something new and it would also show she was right about her concerns over reporting on contaminated blood in the media which in some cases has been abysmal with regard to the level of accuracy. So Caroline Wheeler are you prepared to accept this challenge and answer the questions of a widow who is part of the Contaminated Blood community and has never waivered from the path of seeking truth and justice…. over to you?

As Grayson writes this, she gets sight of Wheelers new book, Death in the Blood and there on page 25 it highlights, “the origin of the blood Roddick received is unknown”. Wheeler needs to do some explaining on how she came to the conclusion after so many years that Roddick had factor 8 and not a whole blood transfusion or is this another of Wheeler’s stories not properly researched?

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”.

Sir Brian Langstaff, Chair of the Infected Blood Inquiry who will deliver an Autumn Report

(Image via the Chronicle)

Long standing haemophilia campaigners Carol Grayson and Colette Wintle refuse to be side tracked by new books about to be published on the Contaminated Blood scandal. They believe attempts are being made to distract and undermine Sir Brian Langstaff’s forthcoming report to be released in 2024 from the Infected Blood Inquiry which began in 2018. Grayson, founder of Haemophilia Action UK, author of this blog stated, “we call it the Spring Report as opposed to the ‘final’ report as the Chair’s work is not fully complete until Sir Brian can report that his recommendations are actually carried out in full, that is the time to use the word “final”. This is reflected in our lawyers Milners and Sam Stein KC, SUBMISSIONS ON BEHALF OF THE CORE PARTICIPANTS REPRESENTED BY MILNERS SOLICITORS – AUGUST 2023

The campaigning duo are aware of two books about to be released on Contaminated Blood but highlight that their focus is on supporting Sir Brian as he has had full access to a huge array of documents and evidence, much of which was made available to Core Participants of the Inquiry on a website storage facility named Relativity. However, although substantial evidence has being released into the public domain from the Inquiry, lawyers have confirmed Relativity is not available to corporate media journalists which makes it nigh on impossible for them to call their books “definitive” accounts of the scandal and undermines the work of the Inquiry. Grayson and Wintle also note that these journalists are so disengaged from the victims that they write about within their publications that they haven’t even sent a courtesy copy of their books to the national Haemophilia Society to review or to long standing campaign groups.

Therefore, rather than be distracted by books from corporate media journalists that rehash old stories and have already displayed innaccuracies, ignorance and bias, Grayson and Wintle will also continue to focus on and support their lawyers August 2023 submission. Milners solicitors have provided an important and useful reference to the Bichard Inquiry child protection procedures following the murder of Jessica Chapman and Holly Wells which will hopefully be applied to the Infected Blood Inquiry.

The earlier Bichard report recognized the need for ONGOING monitoring PAST the release date on an Inquiry report. This can be applied to the Infected Blood Inquiry to ensure government is fully committed to acting SWIFTLY and EFFECTIVELY on the implementation of ALL the recommendations so carefully considered by Sir Brian Langstaff. The Chair has spent much time preparing what he believes is best for those at the heart of the Inquiry, haemophiliacs infected with HIV and hepatitis viruses after receiving factor concentrate blood products to treat their clotting disorder, their infected and affected partners and other family members. Much of the treatment used on haemophiliacs was imported from the US from “high risk” sources such as prisoners, sex workers, gay men, drug addicts and “skid-row donors”. Many haemophiliacs have since died and are still dying, one every 4 days. Milners are intent on working for the best possible outcome for their clients and recognize how aspects of the Bichard Inquiry would be valuable for the Infected Blood Inquiry. They state the following in their submission,

13. On 14 June 2004, the Bichard Inquiry reported to the Home Secretary. The published
    report contained, in its opening pages, a letter from Sir Michael Bichard to the Home
    Secretary submitting his report. In that letter he said: which, for ease of reference, is
    cited in full below:
    “…I am pleased to submit my report to you.
    I am grateful for the assurance you have given me that the report will be quickly
    published.
    I look forward to the Government’s response to my findings and to the
    recommendations which I make. As you know, I aim to reconvene my inquiry in six
    months’ time to assess progress on those recommendations which the Government
    chooses to accept. I am confident, as I acknowledge in my report, of the spirit in which
    my recommendations will be received and taken forward.”
14. Sir Michael was sent a progress report by the Government on 22 December 2004 and
    then provided an update report on 15 March 2005, in which he noted “…the progress
    made to date owes a great deal to the effectiveness of the programme management
    arrangements that were put in place, and I believe that it is essential that these are
    maintained for at least the next 12 months. I am also clear that the fact that this public
    review was known to be taking place has concentrated minds…”

Grayson and Wintle back their lawyers in calling for a similar progress report from government once Sir Brian has released his Spring Report. They feels its important and vital that he then follows up with an update related to the implementation of his Recommendations and that similar arrangements to Bichard can continue for at least 12 months following his report as an ongoing monitoring provision.

Grayson and Wintle reflect on their dismay at how the recommendations of a previous inquiry were blocked by government where there was no official ongoing monitoring past the release date. They spoke jointly stating the following,

We both gave evidence at the earlier Archer Inquiry in 2007 and witnessed 2 years later how the minds of government officials were certainly not concentrated on supporting victims. Government ignored the key recommendations of Lord Archer in his report. Ministers blatently told lies to ensure “compensation on a parity with Eire” was not paid to haemophilia victims by claiming the Eire case was different as the government there had accepted legal liability. This was completely untrue. Haemophiliacs in Eire were paid out on the grounds of “extraordinary suffering” WITHOUT government accepting legal liability and without going to court. Despite us both submitting key evidence to support a Judicial Review into how government came to this wrongful decision (which was WON), the Archer Inquiry by then was over, the Chair had officially stepped down and there was no further official monitoring. Haemophiliacs and their families were once again failed by the state. We recognize the importance of the Bichard Report in continuing to monitor after the Spring Report is presented to ensure the state does not try to wriggle out of its responsibilities yet again and abides by Sir Brian’s full recommendations.

Grayson and Wintle say they have little time to focus on the new books on the Contaminated Blood scandal but may carry out textual analysis at a later date in case of inaccuracies or defamation. They claim the authors have shown no genuine interest in working with the longest standing campaigners and appear somewhat intimidated by strong women that can’t be manipulated or dominated to suit the agenda of the authors rather than an accurate history and narrative of a scandal.

They pair said,

We have seen “taster articles” in Sunday newspapers in advance of the publication of these two new books and spotted inaccuracies immediately which gives us cause for concern. We have previously complained over recent years that these two authors have rehashed the work of long standing campaigners without referencing claiming old evidence is new, left out decades of campaigner history in a podcast and promoted a plagiarist.

We are not impressed by the quality or accuracy of reporting and have seen far better from regional journalists who take time to listen and understand important themes and really study the evidence so this does not bode well for the books. Some journalists appear intent on putting themselves at the heart of the investigation into the scandal and in doing so insult and betray those harmed by contaminated blood. These books are not our focus because if we so wished we are more than capable of writing our own, they forget, we ARE the experts with the decades of lived experience and despite everything we have suffered, we still managed to research, make documentaries with trusted media and receive awards for our work… we led the way, others sinply follow.

We feel its important to highlight the terrible decline in mainstream media ethics and standards. As campaigners, we are appalled at how some journalists now use their power to cancel people out or attack them. We have experienced this ourselves. We have also watched as innocent activists and members of political parties have been set up and defamed by the media, for example by the press promoting the weaponization of antisemitism to silence voices in support of Palestinian rights. How could we possibly trust or work with any journalist engaging in such dirty and unethical behaviour which is the opposite of everything we stand for.

We don’t even feel the need to name the new books as our loyalty is to Sir Brian’s work which is so much more relevant and important to us. It was very hard to trust at first but we have grown to respect Sir Brian. He has a well measured and empathetic approach and great insight into what he is studying in terms of evidence and a very astute mind. We feel he actually cares about those infected and affected and this is not something we have had from some of the corporate media that came into our lives. The Report from Sir Brian which was originally intended to be published in Autumn 2023 has been delayed by several months but this is in the interest of thoroughness and fairness to the many people criticised as they must have time to respond and we understand this.

However we give credit and thanks to some very committed national mainstream media journalists that regularly reported on our campaign efforts in the past such as James Meikle. We also thank the excellent regional journalists that engaged with us where we jointly run campaigns including the Northern Echo in the 1980s and the awarded Bad Blood campaign with the Newcastle Journal and Chronicle and other north-east based media. We also appreciate the ongoing collaboration with Sam Volpe. We value the work we did with Mags Gavan and BBC Newsnight team at the time of the Archer Inquiry nominated for a Royal Television Society award. Thanks also go to Meridian that made the Blood Brothers documentary instigated by Colette featuring her and husband and boys from Lord Mayor Treloar College which again was given an award. In addition regional media in Kent and Worcester that worked with Colette.

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 (deceased) who received regular monthly payments from the Macfarlane Trust and wife Carol Anne Grayson who now receives regular monthly payments as a bereaved widow from EIBSS.

(Image Grayson /Journal Archives)

The following Freedom of Information request has been submitted today (25th August, 2023) to the Department of Health and Social Care

To whom it may concern

Contaminated Blood/Haemophilia HIV monthly payments “for life”

I am writing with regard to haemophiliacs infected with HIV through contaminated blood products, their infected partners and infected and affected bereaved partners who were registered with the Macfarlane Trust. For many years they have received regular monthly payments. These are now paid through the English Infected Blood Support Scheme (EIBSS) since the Macfarlane Trust was scrapped.

Some years ago, as a committed member of the Macfarlane Trust Joint Partnership Group, following a meeting with the Dept of Health, myself and other beneficiaries were informed in person at one of these meetings that,

“the regular monthly payments will continue until the last infected and affected person remains alive.”

This gave huge reassurance to concerned registrants that had feared they might stop and I conveyed this to my legal team of that time.

As part of an MFT newsletter sent to registrants, (which I have in my files at home, also submitted to my current lawyers) the following was stated by Martin Harvey, CEO,

“Part of the restructuring process arising from the Long Term Review includes addressing the current rigid system that surrounds regular payments. From the outset I want to make sure the following message gets through, regarding the rumour suggesting the Trust is going to cut or cut out regular payments. This information is incorrect and just not true, so I hope that is now clear.”

The commitment to regular monthly payments “for life” was repeated over the years to registrants on the schemes both infected and affected.

The scrapping of the Macfarlane Trust and transfer to EIBSS in 2018 has caused huge anxiety in that registrants, many in poor physical health and suffering from depression and PTSD fear they might be betrayed once again by government and this commitment given to those with HIV, their infected partners and infected and affected bereaved partners that monthly payments would continue “for life” would be reneged upon. What did not help matters was that the most committed registrants that had given so much time and energy to contributing to the Joint Partnership Group were deliberately left out of the meeting with Gerard Hennessy, the government appointed mediator to discuss registrants concerns over the scrapping of Macfarlane and 4 other trusts. Nor were they sent questionnaires to elicit their opinions on the move until AFTER the closing date for submissions. This flew in the face of government statements that all registrants, relevant persons had been consulted and caused great hurt and distress to those haemophiliacs and their families that were cancelled out.

1. Under Freedom of Information, I ask the government what discussions and action has been taken by government officials regarding ensuring regular monthly payments for infected and affected formerly under the Macfarlane Trust now EIBSS continue “for life”?

2. What action does the government intend to take to write to former Macfarlane Trust registrants through EIBBS as a matter of urgency to reassure sick and dying haemophiliacs, infected partners and infected and affected bereaved partners that this commitment will be fully upheld as promised?

3. Will government ensure that this commitment is also equally extended to haemophiliacs, their infected partners and infected and affected bereaved partners receiving monthly payments for hepatitis C through EIBSS after receiving contaminated blood products and that they also receive written notification to reassure them monthly payments are for life?

A copy of this letter will be sent to Sir Brian Langstaff, Chair of the Infected Blood Inquiry, who is very much aware of the importance of keeping these monthly payments “for life” as part of lawyers submissions representing core participants and which he was urged to adopt as one of his recommendations. Further copies will be sent to the Haemophilia Society who also fully support this, my legal team, fellow campaigners and my MP Nick Brown.

I look forward to your response.

With thanks

Yours sincerely

Carol Anne Grayson

Contact details supplied

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 and her husband Peter Longstaff who was killed by the state after receiving contaminated blood. Grayson alleges Terrence Higgins Trust are “haemophobic” presenting a very selective narrative of haemophilia history

(Image Grayson archives)

As a result of haemophiliacs infected with HIV and hepatitis viruses during the 1970s and 80s initiating a legal case against the Department of Health and other authorities, in what was to end in an out of court settlement in 1991, the Macfarlane Trust was set up to provide financial support to haemophiliacs infected with HIV and their families. Haemophiliacs are a distinct patient group recognised as having an inherited bleeding disorder. They became infected through the use of factor concentrate treatment used to help their blood clot. This was often imported from the US where “high- risk” donors such as homosexuals, prisoners, drug addicts, sex workers and “skid row donors” were targeted for their plasma which was sold to international pharmaceutical companies. It only took one infected donor in a plasma pool to cause an infection in a haemophiliac recipient and it is now known that plasma pool sizes were far higher in the US and could reach as high as 400,000 donors.

Haemophiliacs were never compensated in 1991, incriminating documents only seen years later were kept out of court and litigants received an “ex- gratia” payment which differed in amount depending if a haemophiliac was married or single. To add insult to injury, haemophiliacs were made to sign a controversial Undertaking, nicknamed the “waiver” which meant most haemophiliacs signed away their rights not knowing they were infected with hepatitis C as test results were withheld until after they signed. Sometimes patients would not be notified until years later as was the case of this author Carol Anne Grayson’s husband, Peter Longstaff, a severe haemophiliac with less than 1% clotting factor infected with HIV and hepatitis viruses. In a legal opinion sought by Longstaff from the then Head of the Bar Association, Matt Kelly QC, he commented on evidence submitted by the couple direct from the 1991 litigation papers stating,

At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”

Kelly concludes,

I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.

Haemophiliacs engaging with the Macfarlane Trust have experienced many challenges over the years and there were concerns at how registrants were viewed and treated by those running the organization. It was sometimes a fraught relationship for beneficiaries and rarely easy. Haemophiliacs fought for improvements in both financial and other support but what they didn’t expect was that a Trust they were assured by their lawyers decades ago was set up “for life” would one day be scrapped. This came to a head in 2018 when Macfarlane was closed down and monies from the Trust were transferred to the UK’s biggest sexual health charity, the Terrence Higgins Trust (THT). This was accomplished by deliberately excluding the longest standing campaigners from a meeting with a government mediator to discuss any concerns and some haemophiliacs and families did not receive questionnaires to elicit their views until AFTER the closing date. This transfer far from being seen as an improvement is now regarded by those infected known as “primary beneficiaries” and directly affected partners as an absolute disaster. THT website reflects their lack of understanding and selective approach to the haemophilia community. They state,

What is haemophilia?

Put simply, people with haemophilia bleed for longer if they get a cut. It’s an inherited (genetic) condition which mainly affects men, although women can be carriers (meaning they can pass it on to their sons) and can have a mild form of the condition.

THT website definition of haemophilia continues a decades long misogynistic attitude which fails to recognize that women diagnosed as haemophiliacs, can sometimes bleed severely and can bleed in different ways to men due to their biological identity. Also that many of the most problematic bleeds for haemophiliacs are internal causing joint damage, THT state,

Here is how THT represent the infection of haemophiliacs with HIV,

How are haemophilia and HIV connected?

During the late 1970s and early 1980s, haemophilia treatments were made from donated blood. Some of this blood came from people who had HIV or other blood-borne viruses, such as hepatitis C, so thousands of people with haemophilia (or who needed transfusions for other reasons) were infected. This is often referred to as ‘the blood scandal’.

Blood is now screened and factors are heat treated.

There is no mention of “high-risk donors” being used in the manufacture of factor concentrates.

THT continues,

Many haemophiliacs did not know that they had been infected until years later – this led to many partners and children also becoming infected. A long battle began with the UK government in a bid to secure compensation.

https://www.tht.org.uk/hiv-and-sexual-health/living-hiv-long-term/haemophilia-and-hiv#:~:text=In%20the%201970s%20and%201980s%20around%205%2C000%20people%20with%20haemophilia,than%20250%20are%20still%20alive.

There is no mention of that fact that positive HIV/HCV test results were deliberately withheld from haemophiliacs sometimes for years. This is why haemophiliacs that were subjected to experimentation and suffered violations regarding the Nuremberg Code highlight the importance of pre and post test HIV and HCV counselling. Haemophiliacs question whether THT has now abandoned this in their emphasis on opt out counselling through A and E departments? Nor is their mention that lawyers were alleging gross negligence and government failures regarding “duty of care”. There is no mention either of the long fight for improved health care, passporting regarding disability benefits for those infected by the state or the need for specialist counselling as well as compensation by counsellors that understand the needs of a very specific patient group and know their history.

Initially, some haemophiliacs tried to work with THT but soon found staff were often unwilling to listen and appreciate their life experience and viewpoint and their history which was different to that of many in the gay community that THT were initially set up to represent. The Achilles heel for haemophiliacs in their obtaining the full backing of THT was what appeared to be an underlying resentment of the fact that haemophiliacs had been infected BY the state supplying infected blood products and not through sexual practice or sharing needles. This was translated into what some viewed as haemophiliacs been seen as an “innocent” party to their infection whilst in their eyes others were judged regarding routes of infection. The fact of how haemophiliacs acquired their multiple infections is quite simply a fact and one on which litigation has been based plus the setting up of a public inquiry to investigate what went wrong. The Inquiry includes looking at whole blood cases and thalassaemia also infected through blood transmission. This author alleges that it is the route of infection for haemophiliacs that has created a “conflict of interest” for THT and long held resentments which have now descended into toxic “punishment” of those infected and directly affected within the Macfarlane haemophilia community.

Grayson argues that this negative attitude is a form of “haemophobia”. The definition of haemophobia is “an extreme irrational fear of blood”. In the case of THT this is not necessarily the fear of blood in the physical form but rather the narrative of blood infection as it relates to haemophiliacs that must be controlled, ignored and cancelled out.

In the history of how haemophiliacs came to be infected is the harsh reality of how the blood of gay men was sold to pharmaceutical companies to be used in the manufacture of factor concentrates. In fact, US legal depositions obtained through the instruction of Grayson to her UK lawyers, Milners, shows that gay men were actively targeted for their “hepatitis rich blood” used in vaccine and other research and the surplus was added to the factor concentrate pools. Plasma wagons would be parked outside the gay bath houses of San Francisco as AIDS was emerging. Gay men were reluctant to stop donating as this was viewed as a sign of equal rights with straight donors. In addition, some closet gay men used the selling of their blood as a sign as “proof” to their families that they were “straight” so selling their blood had another useful purpose and overcame the need for safety first.

In the early 2000s, Grayson had contact with journalist Paul Cunningham of RTE who covered the Lindsay Tribunal and was awarded for his reporting on how haemophiliacs in Eire came to be infected through contaminated blood products. During this period, Grayson had been sent a collection of gay donor advertisements from a friend in Canada an advocate for infected haemophiliacs. Cunningham was interested to checking this out further in the making of his documentary titled, Bad Blood and once concluded, he received an Irish Film and Television Award.

As part of his investigations, Cunningham travelled to the US to investigate plasma collection at Louisiana State Penitentiary where male prisoners often practised unprotected sex with other inmates, some gay or bisexual and some due to the absence of female sexual partners. Grayson wrote to Inquiry investigators highlighting the importance of Cunningham giving evidence and he was duly contacted officially to provide a testimony. Under the heading Targeting Gay Men As Donors, Cunningham states,

As I said previously, one of the issues that we investigated was the deliberate encouragement of gay men to donate blood and/or plasma by US pharmaceutical companies

Charles Kozak, an American lawyer we interviewed for the film, told us that “homosexuals had built up a resistance to Hepatitis because of their sexual practices”. The “drug companies” therefore recruited gay men as donors as Hepatitis B antibodies in their blood was desirable.

He added,

We contacted Donald Francis, a former employee of the Centers for Disease Control and Prevention of the United States (hereafter, the ‘CDC’), the leading national public health institute. In this capacity, he advised pharmaceutical companies and tracked the development of diseases.

We met with Mr Francis in 2001. He provided us, at this meeting, with a deposition of his, that he had made prior to our meeting (Exhibit WITN3531003). As I understand it, the deposition was a supplemental expert report that is now a public court document in America.

The handwritten annotations on the copy attached to this statement are my notes and comments. The video testimony that we took of Mr Francis for the film closely mirrors the deposition.

He explained that “since 1996”, he learned that Cutter, Baxter and Alpha “collected plasma from urban homosexual men for Hepatitis B immunoglobulin (HBIG) production; used that same plasma in the manufacture of Factor VIII and IX concentrates prescribed for hemophilia; and continued to market this dangerous product after it was well-established that the source plasma presented the worst possible risk of AIDS to haemophiliacs”.

I saw this process as a perfect design for infecting haemophiliacs with HIV.         

In Donald Francis’s words, “the same conduct that made urban homosexual men valuable plasma donors caused multiple other diseases that made this population inappropriate donors for any other blood or plasma product”.

Since THT have taken over the Macfarlane monies this is a part of haemophiliacs’ history which THT do not discuss. Instead, the current CEO Richard Angell has promoted gay men donating today but without any public acknowledgement of how gay men donating in the past led to many deaths within the haemophilia community and the trauma experienced by those still living now having to go to THT for money for counselling. Ironically changes to UK blood donation were made recently to include gay donors invited to discussion groups on how this should happen were carried out without any discussion with infected haemophiliacs to debate this openly and allay any fears they may have had, it was all about promotion of gay rights, haemophiliacs were not even a consideration regarding any potential safety concerns.

Once THT took over the Macfarlane Trust monies, they increasingly failed to listen to those infected and began to talk for them without understanding their history, specific needs and their complicated and hugely traumatising life experience. A letter was sent in 2021 from the Haemophilia Society and several campaign groups to request that they stop acting as the voice of the haemophilia community but to no avail. Grayson alleges this form of haemophobia from THT is about power and control and reducing the narrative of the Contaminated Blood scandal with its dark history of experimentation and human rights abuses.

Since then THT have announced their funding of Jason Evans, Factor 8 Group, the son of a haemophiliac who died from HIV who appeared for the first time in the media around 2017 promoting FAKE timelines of discovery of documents and distorting haemophilia history. This goes against the principle of fighting for truth and justice and plays down long standing haemophilia campaigners suffering of having incriminating evidence blocked from the 1990s onwards, ignored by government officials and “inadvertently trashed by junior civil servants”.

The question is, why would THT want a FALSE history presented, that would cause yet more trauma to victims, what is in it for them and why would they wish to SUPPRESS the truth? Is this haemophobia raising its ugly head and ensuring the TRUE history is not presented by THT. Evans who briefly highlighted the gay donor ads 2 decades AFTER Grayson first received hers is now silent on their significance and fails to acknowledge that campaigners highlighted this reality all those years ago. Instead, he places himself at the centre of the blood narrative in the media promoting LIES which are then published by unethical journalists whether by accident or design.

Questions to THT from beneficiaries of the scrapped Macfarlane Trust are delayed or totally ignored. This includes how THT are spending the transferred Macfarlane monies, the Tender process for research funding, how much Evans is being funded and what research he is carrying out. The only thing THT will provide money for is counselling which some beneficiaries can get for free anyway, yet THT will provide counselling or nothing. Attempts to seek funding for anything else is swiftly declined.

There is now a battle for the truth on social media. Haemophiliac Andrew Evans infected with HIV as a young boy has begun a daily tweet repeating the same questions each day, with Grayson joining him with her own questions. Evans tweeted,

Dear @THTorguk and @Factor8Campaign, Please explain in detail your financial relationship. Also,

@JasonEvansF8 please explain in detail how you are spending money given to you from the former MFT via @THTorguk and private donations. Thank you.

Followed by,

Day 17. No further along. No acknowledgement, certainly no response. No respect. No dignity. No accountability. Just contempt.

Postive- WomenOrg Frankie, an anonymous account from a woman infected via her haemophiliac partner tweeted,

Contempt, disrespectful clone of MFT. You continue to cause further damage by denying our right to understand how the MFT money is spent and what exactly are you giving funds to

@Factor8Campaign for. Appalling behaviour from both of you

@bloodinquiry

Another account by the name of Positive Woman drew attention to issues over failure to minute meetings and how funds are being spent.

Primary beneficiaries in first User Group insisted minutes were taken as had been the case for Partnership Group of former Macfarlane Trust. We were closed down. Cancelled out. Why?

and

We are beneficiaries of a restricted fund. Primary Beneficiary term for infected which

@THTorguk refuse to recognise. They push use of the term Service User to invalidate our right as all beneficiaries to restricted funds.

@bloodinquiry

Mark Anthony Ward, another haemophiliac infected as a child also known as Haemosexual presenting the rights of gay men as a gay man himself tweeted,

The UK’s biggest #HIV charity

@THTorguk has continued to ignore legitimate concerns from a small vulnerable group of HIV+ people which they ignored for 40+ years Is that compassion or abuse?

Grayson draws attention to the failure of THT to pay her the back money she is owed due to a historic mistake to her monthly widow’s allowance where they wrongly means tested the disability part of her state benefits. She has received an apology and acknowledgement from the English Infected Blood Support Scheme (EIBSS) set up in 2018 who paid her some back money from that date. However, they were unable to pay any before 2018 and the Cabinet Office referred Grayson to THT for the money owed before that date. Grayson said,

I allege THT are practising a haemophobic agenda against myself and others. Their attitude towards me is cruel, callous and comtemptuous. If they can afford to fund a non- infected, non- haemophiliac plagiarist they can surely afford to pay back money owed to the widow of a Primary Beneficiary who was an infected haemophiliac. They are punishing me by withholding what I am owed through a mistake where I am the injured party after all I have suffered already. I am aware they have helped other partners/widows of haemophiliacs, writing off loans so why am I being denied help? I was left in a very vulnerable financial position for years forced into debt due to a mistake by an official body meant to support me. This caused immense stress and made my depression and PTSD worsen. Although THT write to government claiming to speak for the rights of the haemophilia community and calling for compensation, their actions towards myself and others, cancelling out, blocking and silencing infected and affected and withholding back money do not match their words.

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”.

New book published in May 2023

(Image, via Henri Bergeron, Twitter)

Long standing haemophilia campaigners, including this author Carol Anne Grayson will remember the surprise and excitement generated in the 1990s on hearing about the criminal case launched in France to hold those responsible for infecting French haemophiliacs with HIV and hepatitis C through blood products to account.

In 1991, just months after the UK HIV haemophilia litigation concluded, the following was reported in Nature Journal (Vol 353, 31st October 1991), though it was unlikely to have been seen by UK haemophiliacs who were mostly preparing to die having been given only a 5 year life expectancy and exhausted after several years of legal action and trying to focus on staying alive.

French blood scandal echoes across Europe

• Three French officials will stand trial
• Transfusion services elsewhere are watching

London

THE forthcoming trials of three French health officials are causing concern among blood transfusion services in other European countries, where similar charges might be brought. Jacques Roux, former director general of the health ministry, and Robert Netter, former head of the French national health laboratory, were charged last week with failing to prevent the distribution of HIV-infected blood-clotting factors to French haemophiliacs in 1985. Michel Garretta, former head of the French national blood transfusion centre (CNTS) in Paris, is accused of knowingly supplying the infected clotting factors.

The charges have destroyed the morale of the country’s transfusion service. But blood transfusion experts warn that the shockwave from the trial may extend beyond France. Because France was by no means the last European country to begin heat-treating clotting factors supplied to haemophiliacs (which deactivates any HIV present), the action against the Frenchmen sets a worrisome precedent for their counterparts elsewhere in Europe.

In 1992, at the time of an Independent article being published on the French blood scandal (see below) UK haemophiliacs were still very much in the dark regarding the details of the circumstances of their own infection. Most haemophiliacs were not public due to stigma and discrimination surrounding HIV. The 1991 litigation led to an “ex gratia payment” and the Macfarlane Trust had been put in place “for life” so there was a little more security however no litigants had seen what we now know was damning evidence which had been kept out of court and most did not know they were infected with hepatitis C. This was despite haemophiliacs being made to sign a hepatitis Undertaking which Grayson nicknamed “the waiver” signing away their rights to litigate further for “hepatitis viruses” and without realizing the dreadful consequences of doing so.

It would be a further 2 years (1994) before Grayson and Longstaff began their quest to locate and find evidence researching earlier articles on the history of infection and also to look at the French case to see how haemophiliacs and their lawyers had managed to launch a criminal case. Early inspiration for UK haemophiliacs was to come from the forcefulness of French campaigners across the channel who were not going to accept their infection lying down (see following 1992 Independent article).

French ministers cover their tracks on infected blood

Within sight of the Palais de Justice, red dye was poured into the Saint Michel fountain, making the water the colour of blood. Stencilled graffiti proclaimed ‘Aids Killer State’. Demonstrators outside the courthouse shouted slogans which at times disrupted the proceedings.

https://www.independent.co.uk/news/world/europe/french-ministers-cover-their-tracks-on-infected-blood-1535267.html

On October 24th 1992, the Los Angeles Times reported the following.

French Convict 3 in Case of AIDS-Tainted Blood : Scandal: Government doctors knowingly gave the infected blood products to hemophiliacs, 256 of whom died.

PARIS —  

A French court on Friday convicted three former government doctors, including the director of the National Blood Transfusion Center, of knowingly distributing AIDS-infected blood products to hemophiliac patients, resulting in as many as 1,000 new cases of infection and 256 deaths.

After a trial that sparked a national political scandal reaching the highest levels of the Socialist government, the three-judge panel sentenced two of the convicted physicians, former transfusion center director Dr. Michel Garretta, 48, and his associate, Dr. Jean-Pierre Allain, 43, to prison.

“To my knowledge,” said Dr. Griffith D. Thomas, a Los Angeles physician and attorney associated with several AIDS-related malpractice lawsuits, “it is the first time that physicians anywhere in the world have been sentenced to jail for a conviction of negligence in AIDS treatment.”

Garretta, traveling in the United States when the verdict was announced, was sentenced to the maximum term of four years. Allain was sentenced to two years.

Another former official with the French Health Ministry, Jacques Roux, 69, was given a four-year suspended sentence. A fourth man, former public health laboratory director Dr. Robert Netter, 65, was acquitted.

The judges also assessed a total of $1.8 million in fines, to be distributed among civil plaintiffs in the case, after ruling that the doctors continued to supply contaminated blood products to French hemophiliacs at least six months after an American blood-screening test and a heat-treatment process, which prevents contamination, were perfected and introduced in other countries.

https://www.latimes.com/archives/la-xpm-1992-10-24-mn-715-story.html

As previously highlighted it wasn’t until that 1994 that Grayson and Longstaff having returned from an extended period abroad began to realize the scale of the cover-up on Contaminated Blood after Longstaff learnt of his hepatitis C positive test result. This was confirmed via a test which had been carried out without his knowledge and permission using blood taken to check his clotting levels and the result although known to his doctors back in 1992 was withheld from Grayson and Longstaff for the next 2 years. The couple realizing they needed to take action, set up Haemophilia North campaigning on both HIV and hepatitis viruses which was later to become Haemophilia Action UK. The Birchgrove group was already operating as an efficient support group for haemophiliacs infected with HIV but was limited in research at that time. The Manor House Group was also set up in 1994 jointly by Peter Mossman and Peter Hughes to campaign on hepatitis C and Colette Wintle began campaigning as an independent campaigner, calling for justice for all.

In 1994, the national Haemophilia Society was still denying hepatitis C was a problem and it took a year of intense pressure from campaigners before the Society launched its own hepatitis C campaign in 1995 though calling only for a “hardship fund” and not compensation. In 1996 Grayson initiated a campaign for “compensation on a parity with Eire” (as Ireland had announced its compensation scheme) and called once again for government to launch a public inquiry.

In the late 1990s, the Society attempted to crush the more effusive language of campaigners, words like “haemophilia holocaust” “experimentation” “guinea pigs” “corporate manslaughter” and references to the Nuremberg Code were frowned upon and any militant approach to campaigning was met with frowns, anger and attempts to silence and make haemophiliacs feel guilty for expressing themselves in such a way. At one demonstration where Longstaff supplied bloodbags (filled with Ribena) as a visual symbol of dirty blood donations, the then CEO Karin Pappenheim refused to take one and turned her back in disgust. However it appeared that the more militant efforts of campaigners in Frances was rather more successful than the staid Society approach in the UK. One funny moment did however emerge in a attempt at stronger activism, when some haemophiliacs managed to handcuff their wheelchairs to railings near Westminster before protection barriers became the norm. This attracted a lot of attention but haemophiliacs were simply lifted up and carried further down the road by police (as fellow activists called on the Met not to be rough in case of bleeds) as it was themselves they ought to have chained and not the wheelchairs.

In the 1990s it was more difficult to make global campaign connections. These were the days before social media, Twitter and Facebook, and it was much harder to locate and speak to haemophiliacs abroad except by letter and very expensive phone calls, there were no special rates for phone deals in the early days and then there was the language barrier. O level French didn’t quite cut it when trying to communicate and ask detailed questions containing a lot of specific medical content and specialist terms. There was however a screening of a documentary on UK TV which highlighted the plight of French haemophiliacs (with subtitles) and Grayson was able to contact the programme and leave her contact details thus establishing some basic contact with fellow campaigners in France.

In 1996, the Irish Times highlighted,

Three decisions taken by French officials in the mid 1980s led directly to AIDS deaths. Although tests which could have detected the contaminated blood were available from a US company, the French National Blood Transfusion Centre preferred to wait until a French test came on the market. Dr Michel Garretta, the director of the NBTC, decided to try to sell off existing tainted blood stocks before a government ban on the sale of non tested blood took effect. And French authorities decided it was too expensive to kill the virus by treating the contaminated blood at high temperatures.

Although there were differences between the cases of the UK and France, documents being discovered by Grayson in England during this same time period were proving equally as damning. Evidence was found relating to safety issues around the importation of US factor concentrates, haemophiliacs as test subjects for experimentation, serious safety violations surrounding the collection of plasma from high risk sources such as prisoners, gay men, sex workers, drug addicts and skid row donors and the use of far higher plasma pools. Then there was the question of dangerous products being dumped on the UK with the search to secure medical and treatment records and learning of the failure to recall suspect batch numbers. In addition, there were issues of non- informed consent and withholding hepatitis C test results, letters revealing that government were already trashing important documents and the unethical behaviour of some of those treating haemophiliacs who were on the payroll of plasma companies. It is a MYTH to think these issues only surfaced in 2017 through new campaigners!

Following on from the French, UK haemophiliacs attempted to establish a criminal case reporting concerns to the police at Dyfed Powys, Wales, asking them to consider “corporate manslaughter” which was their speciality as a force but we now knew the case was sat on and no further investigation was ever carrued out.

The following report was published on further criminal proceedings regarding the French criminal case in 1999 through the World Socialist Website

France’s HIV-infected blood trial set to conclude this week

Former prime minister unlikely to be found guilty

A former French prime minister charged with manslaughter for his part in a scandal involving supplying HIV-tainted blood to hospitals looks set to be exonerated.

The “contaminated blood” trial, which began on February 10 in Paris, looks set to absolve all the high-level politicians charged with responsibility for one of the worst man-made health disasters in France. The prosecution admitted the collapse of their case on February 24.

Due to be concluded on Friday, the trial has revealed the incapacity and unwillingness of all the major parties to deal with this crisis. Former Socialist Party Prime Minister Laurent Fabius, former Minister of Solidarity Georgina Dufoix and ex-Secretary of State for Health Edmond Herve have faced charges of manslaughter and criminal negligence. Seventeen other less prominent officials are also charged with “poisoning” and “complicity to poison”. A final verdict by the judges is expected March 9.

https://www.wsws.org/en/articles/1999/03/hiv-m03.html

On the 10th March 1999 the Guardian reported,

France’s Socialist former prime minister, Laurent Fabius, and two of his ministers, walked free from court yesterday at the end of a four-week trial in connection with the distribution of HIV-infected blood in the 1980s.

https://www.theguardian.com/world/1999/mar/10/7

Fast forward decades later and this author spotted the following post written by Constance Nathanson and Henri Bergeron in 2021 which looked intriguing, especially with reference to how gay men organised or failed to do so at the time of the AIDS blood scandals at that time in the US and France and how that impacted on contaminated blood victims and their campaigns for truth and justice.

Social Production of Political Crisis: Reflections from the 1980s HIV/Blood Wars

Constance Nathanson, Columbia University
Henri Bergeron, Sciences Po

HIV contamination of the blood supply produced a political crisis in France in the early 1990s with ripples that continue to this day (e.g., embrace of the “precautionary principle” leading to rapid suspension of the AstraZeneca vaccine against Covid-19). Comparative cross-national research comparing the emergence and ramifications of this crisis in France with the absence of crisis in the US confronted with the identical circumstances of blood contamination contributes to theorizing the social production of crisis and illuminates the circumstances under which crisis does or does not follow upon a potentially disruptive event. Grounded in sociological theories of organization, social movements, and the interaction of science and society and based on extensive archival research in France and the US, the authors propose a series of hypotheses to account for the stark difference in these countries’ response to the HIV/blood affair. In part these differences were cultural—France’s more powerful mythology around the meaning of blood along with sharp differences between the two countries in normative perspectives on the values of material success and technological innovation. But they were also political and organizational. Social production of crisis requires organizational and political space for its agents to operate. In the US that space was preempted, first by the early organization and political savvy of gay men and, second, by a health care crisis precipitated by the absence of universal health care in the face of a raging epidemic. In France, gay men’s organizations were weak to non-existent and health care was universal, leaving space for victims of toxic blood to organize, creating a political crisis to which the French government was ultimately forced to respond.

No extended abstract or paper available

Presented in Session 188. Pandemics and Society

http://ssha2021.ssha.org/abstracts/210441

In May 2023, the following book was published by the same authors, Nathanson and Bergeron, titled, The Social Production of Crisis: Blood Politics and Death in France and the United States with the following description by Oxford University Press.

• Presents an entirely new take on the AIDS epidemic with a cross-national comparison
• Offers a significant contribution to understanding and interpreting how and why the blood affair unfolded differently in France from the United States and to our conceptualization of the social production of political crisis
• Draws upon original cabinet-level data from French National Archives that normally would be embargoed for 50 years
• Brings together original oral history interviews from US universities and national archives in response to the blood affair in the United States

https://global.oup.com/academic/product/the-social-production-of-crisis-9780197682487?cc=gb&lang=en&

This further very helpful published page from Oxford Academic Press allows the reader to access an abstract of each chapter detailing the content of the book by clicking on links on the left hand side of the page and looks fascinating reading and Grayson is sending for the book and which will be highlighted to Sir Brian Langstaff, Chair of the UK Infected Blood Inquiry launched in 2018.

https://academic.oup.com/book/45671/chapter-abstract/398050658?redirectedFrom=fulltext

Back in the early 2000s, Grayson and Longstaff were able to launch a legal case against 4 US pharmaceutical companies with the help of lawyers in San Francisco as part of the 2nd generation, dumped treatment cases which came to a conclusion some years ago. Longstaff died in 2005, his death as a result of being infected with HIV and hepatitis viruses through his factor concentrate treatment. As a result of their joint efforts the couple were able to learn far more about the cases of contaminated blood in the US, how the pharmaceutical cases operated and even access US legal depositions to read and submit to the Inquiry.

What will be interesting to learn more about from the new book now is how the US and French cases differ and as highlighted by Nathanson and Bergeron how the role of gay men whether prominent or low key within the AIDS crisis led to differing responses in the two countries. What can we learn from this?

In the UK there have long been issues over discussing the safety impact of gay men donating blood during the 1970s and 80s and the resulting HIV and hepatitis infections in haemophiliacs without being falsely accused of being “homophobic”. Campaigners are advised to be careful what they say regarding the pressure by gay activists on the pharma companies which led to delays in removing gay donors from selling their blood. It is suggested it might not be “politically correct” to express anger at the fact that pharma companies targeted gay men for their “hepatitis rich” blood in their efforts to create a vaccine, then used the surplus plasma to top up the pools for factor concentrates. Haemophiliacs shouldn’t voice deep concern at safety issues rising from the fact of men have unprotected sex with men in cubicles whilst waiting to sell their plasma in US prisons. Nor should they be disturbed at the testimonies of closet gay men in the 1980s selling their blood at plasma centres to “prove” to relatives they were “straight” during the worst of the AIDS crisis. Its a part of Contaminated Blood history that many want to deny.

Over the years haemophiliacs have had to face the fact that some gay men are controlling narratives around the infection of haemophiliacs to avoid dealing with past history and as a form of “damage limitation”. This became an issue of concern regarding (then) closet gay men working at the Haemophilia Society during the 1980s and concerns over a potential “conflict of interest” between gay rights and blood safety and how haemophilia issues were portrayed. Then there are the alleged tensions from some gay men over haemophiliacs infected through blood products being portrayed as “innocent” victims and in their eyes treated differently to others. However it is a fact that haemophiliacs were infected BY the state and its blood policies hence the more recent apologies from government, the setting up of the Infected Blood Inquiry to investigate the circumstances leading up to infection and the response afterwards and to compensate victims of the scandal.

So, to the present day and the Macfarlane Trust established as part of the 1991 HIV litigation is no longer in existence, scrapped by government without consulting all registrants and beneficiaries and another lie told to the public. Long standing campaigners were deliberately kept out of a meeting with a government appointed mediator to discuss any concerns and some were not sent questionnaires to elicit their thoughts and opinions until AFTER the closing date. Haemophiliacs now have to go begging to the Terrence Higgins Trust, the UK’s largest sexual health charity (originally set up to support gay men) that have taken over the remainder of the monies from Macfarlane, for counselling, as nothing else is on offer. This is a ridiculous situation given many can access counselling for free yet may have needs in other directions which are being refused. The message from THT is, that its counselling or nothing.

THT are continuing to speak for haemophiliacs despite knowing little of their past history and are cancelling out long standing campaigners. In addition, the charity is funding Jason Evans, Factor 8 Group who since 2017 has plagiarised the work of Grayson rehashing old stories in the media and claiming he has discovered documents that were discovered by Grayson 2 decades ago and presented to government at Westminster meetings. The evidence was blocked and ignored by government. In 2021, the Haemophilia Society and campaign groups (that now work together) wrote asking THT NOT to speak for infected haemophiliacs, infected and affected partners as the situation with THT had become untenable but to no avail.

On the 11th July 2023, a further letter was sent toTHT from the Haemophilia Society and a number of key campaign groups including Haemophilia Action UK, the group set up by Grayson as follows,

Dear Richard

Thank you for your letter of 21 June 2023 in which you make the offer to cover the expenses of a formal mediation process between THT and former Macfarlane Trust beneficiaries who are also members of the Haemophilia Society.

I have consulted with the following who are former MFT beneficiaries, or represent them:
Haemophilia Scotland, Haemophilia Northern Ireland, the Birchgrove Group, Contaminated Blood Campaign, Haemophilia Action UK, Haemosexual, Positive Women and Tainted Blood. Although they do not represent all former MFT beneficiaries, they do represent a majority.

The view of all these groups remains unchanged from those expressed in the letter to your predecessor Ian Green on 20 October 2021. In that letter the signatories requested that THT no longer represents that it speaks on their behalf on any platforms, including the Infected Blood Inquiry and the APPG for Haemophilia and Contaminated Blood.

HIV infection linked to people with bleeding disorders and their partners constitutes a unique narrative, which you acknowledge in your letter has been a point of tension during the years the MacFarlane Trust was in existence and since it was dissolved without community consultation.

The tensions with former MFT beneficiaries and the groups representing them were exacerbated with the announcement last year that research is being undertaken by Factor 8 being funded from THT former MFT monies, without any explanation of what research is being carried out and with what objectives. It is realised that it is for THT to determine where former MFT funds are directed but regretted that simple requests for information from MFT primary beneficiaries have been ignored.
There are also concerns about claims Factor 8 makes about the provenance of documents uncovered in some cases decades ago by Haemophilia Action UK and that their legal representatives were made aware of these concerns in 2018 and the narrative this offers to politicians of not knowing what was already publicly exposed.

Unfortunately, it has been reiterated to the Haemophilia Society that there is no trust from the former MFT beneficiaries in THT and the offer of formal mediation has been rejected as the groups consulted feel that their views will not be genuinely heard and that their voices will be again silenced and shut down.

Yours sincerely

Kate Burt
Chief Executive, the Haemophilia Society
And on behalf of
Clive Smith, Chair the Haemophilia Society
Bill Wright, Chair Haemophilia Scotland
Simon Hamilton, Chair Haemophilia Northern Ireland
The Birchgrove Group
Contaminated Blood Campaign
Haemophilia Action UK
Haemosexual
Positive Women
Tainted Blood

END

To date, almost a month has passed and THT continue to ignore the letter. They refuse to answer questions on how they are spending the transferred Macfarlane Trust monies, give details of their Tender process and the funding of Jason Evans for “research”. Campaigners do not have a clue what he is researching?

In addition THT are refusing to pay back money to Grayson where it was established Macfarlane had made a mistake in calculating her monthly widow’s allowance leaving her thousands of pounds underpaid. When the English Infected Blood Support Scheme (EIBSS) took over from Macfarlane in 2018 they rectified this paying the owed back money back to 2018 when they came into being and added 8% interest. Grayson was then advised to check with government who owed her the rest and the Cabinet Office referred her to THT. Grayson alerted Macfarlane shortly after realizing a mistake had been made in 2011 even writing to a trustee, a lawyer for help. He replied thanking her for her “excellent letter” but appeared to misunderstand the situation and despite repeated calls from Grayson to Macfarlane to investigate, this never happened.

It was only when Grayson was able to appoint lawyers, Milners, to represent her at the Infected Blood Inquiry that they offered to look at the paperwork accessed from Russell Cooke solicitors and write to THT for the owed back money. The irony is Richard Angell (now CEO of THT) is quick to write and highlight that government should respond swiftly to haemophiliacs and families, be transparent and pay compensation as a matter of urgency yet THT can’t even pay out a widow where an injustice occurred years ago, though found the money to fund her plagiarist. Many haemophiliacs and partners suffer from depression, PTSD, anxiety as a result of Contaminated Blood and the distress caused to already traumatised victims including Grayson appears never ending.

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 Grayson was awarded the ESRC Michael Young Prize for her research dissertation on Contaminated Blood written in 2005/6

(Image Grayson Archives)

The following email dated 17th January, 2023 was sent to Ian Green (then) CEO of the Terrence Higgins Trust regarding the announcement that the sexual health charity was funding Jason Evans, Factor 8 Group in a research capacity. Monies from the Macfarlane Trust set up by government to provide financial and other support to haemophiliac beneficiaries and partners infected with HIV, affected partners and bereaved families were transferred to THT when the Trust was closed down in 2018. This was done however without consulting all registrants and the longest standing campaigners, some that had been part of the Joint Partnership Group were deliberately kept out of a meeting with a government mediator to elicit their thoughts and opinions. A questionnaire produced for the same purpose was not received by some registrants until AFTER the closing date of submission. This caused huge distress and anger within the infected and affected haemophilia community.

Richard Angell, (current) CEO was allegedly overheard by a person within the Haemophilia Society some time back before he entered this role to have stated, that THT had “found a way to fund Jason”. This raised questions as to what was the Tender process and whether other candidates were given equal consideration for funding? This was particularly concerning given Evans had repeatedly appeared in the media claiming he had discovered documents from 2017 onwards that were discovered and presented by the author of this blog Carol Anne Grayson to government 2 decades ago. Such claims distort the Timeline of who knew what and when which is key to achieving truth and justice. Numerous stories that Grayson and her late husband Peter (a haemophiliac infected with HIV and hepatitis viruses who died in 2005) had initiated with the press based on their research that were published years ago and were exclusive to the couple were also plagiarised and rehashed.

To date, the Tender Process has not been sent to campaigners, there has been no explanation of what research is being carried out or how much Jason Evans and Factor 8 Group are being funded and the questions below remain unanswered.

Dear Ian,

In relation to Terrence Higgins Trust funding of Jason Evans to carry out research or campaigning on Haemophilia/Contaminated Blood, I would be grateful if you could assist me with the following, please provide :-

1. Any published and peer reviewed research on Contaminated Blood carried out by Jason Evans prior to 1^st January 2015

2. Any published research on Contaminated Blood by Jason Evans that has passed an ethics committee prior to January 1^st 2015

3. Any published research on Contaminated Blood by Jason Evans that have won awards prior to January 1^st 2015

4. Any questionnaires on Contaminated Blood devised by Jason Evans that have passed an ethics committee prior to January 1^st 2015

5. Any press articles where Jason Evans is interviewed as a campaigner on Contaminated Blood prior to January 1^st 2015

6. Any awarded media campaigns on Contaminated Blood where Jason Evans  was a joint partner prior to January 1^st 2015

7. Any awarded documentaries on Contaminated Blood where Jason Evans participated as a researcher prior to January 1^st 2015

8. Any dissertations published on Contaminated Blood by Jason Evans prior to January 1^st 2015

9. Any petitions on Contaminated Blood raised by Jason Evans prior to January 1^st 2015

10. Any Hansard publication on Contaminated Blood where Jason Evans is mentioned prior to January 1^st 2015

11. Any printed or digitalized book on Contaminated Blood where Jason Evans is mentioned prior to January 1^st 2015

12. Any campaign group on Contaminated Blood that Jason Evans set up prior to January 1^st 2015

13. Any award related to any aspect of Contaminated Blood won by Jason Evans prior to January 1^st 2015

14. Any TV or radio interview on Contaminated Blood which features or is presented by Jason Evans prior to January 1^st 2015

15. Any podcast on Contaminated Blood featuring or presented by Jason Evans prior to January 1^st 2015

I would be grateful if you could reply within the 20 days stated in THT earlier email.

With thanks

Yours sincerely

Carol Grayson

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”.

Peter Longstaff and his younger brother Stephen as children rescuing birds from an oil slick on the beach. Both went on to die as a result of receiving contaminated blood

(Image via Hartlepool Mail)

Over the years author of this blog, haemophilia campaigner, Carol Anne Grayson, sent a number of letters and emails on the Contaminated Blood scandal to Jeremy Hunt when he was Secretary of State for Health. Grayson’s husband Pete and brother in law Stephen were infected with HIV and hepatitis viruses during the 1970s and 80s through imported US factor concentrate treatment for their inherited bleeding disorder, haemophilia. Much of this treatment came from high risk donors such as prisonersm gay men, drug addicts, sex workers and skid row donors with plasma pools reaching as high as 400,000 donors far higher than was originally thought.

The boys attended Lord Mayor Treloars College for children with disabilities as boarders at different periods and were part of experimental treatment trials. Both have since died as a result of receiving contaminated blood, Stephen in 1986 and Pete in 2005.

After Lord Hunt received the following letter dated 26th January 2016 via Grayson’s MP Nick Brown, Grayson noticed a distinct change in attitude from Hunt who had for some time been resistant to considering a public inquiry. Documents later released at the request of Hunt to Grayson showed that he went on to write to Theresa May to call for a public inquiry after discussing it with his department. On the 11th July, 2017, May announced that government was finally willing to to hold a public inquiry which has become the Infected Blood Inquiry chaired by Sir Brian Langstaff and which commenced in 2018.

RE: Haemophilia Holocaust… a Nazi- style system which abused haemophiliacs from the cradle to the grave

Dear Jeremy Hunt,

I am writing to you with some specific and important questions to which I require answers. You may or may not be aware that as well as a widow I am also a researcher and critiqued the government’s report “Self-Sufficiency in Blood Products in England and Wales A Chronology from 1973 to 1991” for which I received the Economic and Social Research Council (ESRC award) in the name of Sir Michael Young. The DOH report (from unknown authors) was alleged to be the definitive report, yet it is greatly lacking with much evidence missing or excluded from the research. I was fortunately able to obtain copies of some of the so called missing or shredded documents to challenge some of the findings. Link to report below,

http://webarchive.nationalarchives.gov.uk/20070402085944/dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4130917

My attention is drawn to the fact that although the report chronology begins in 1973 there is nothing of significance on the first treatment trials carried out on the “captive” boys at Lord Mayor Treloar School, Alton in Hampshire (a so called centre of excellence) in the 1970s who were put on initial trials of the newly imported US factor concentrates. My late husband was one of those boys.

Again you may or may not be aware that the 70s was a dark period for the school with a culture of extreme bullying of children with disabilities or “cripples” as they were called back then. Not only this, there was a culture of physical and sexual abuse. This was confirmed when my husband received a letter not long after we first got together from a man linked to the school on his deathbed who wrote to my husband (letter was forwarded to him) saying how sorry he was for not speaking up at the time. (Speaking up by some resulted in changes for the better by the 1980s but it was too late for some). Within this setting the factor concentrate treatment trials took place, the boys were the guinea pigs for the Department of Health whose policies introduced the treatment, the pharmaceutical companies who provided the treatment and the doctors who carried out the trials.

I would remind you that US factor concentrates were sourced from tortured US prisoners at Arkansas, Louisiana and other state prisons, who were often known drug users, practising unsafe anal sex and high risk for viral infections. In addition there were multiple other safety violations recorded. Treatment batch numbers were traced back by lawyers to infected donors. The first hepatitis outbreaks soon hit the school as pupils/patients were used to cryoprecipitate from a handful of unpaid donors not large plasma pools of paid prisoners of up to 50,000 which included gay donors from the San Francisco “bath houses” where they also used to collect plasma.

Please tell me the name of the medico-ethics committee that allowed treatment trials at the school (and any other places in the UK that participated in early trials) and release the documentation which of course is essential and a legal requirement for treatment trials.

Please inform me point by point how the DOH, doctors, pharmaceutical companies ensured all 10 points of the Nuremberg were strictly adhered to and release the relevant paperwork from that era. The code dates back to 1948.

Who passed the treatment trials, followed up the boys and took action and notification when serious hepatitis outbreaks occurred at the school?

How many boys were on the trials, who was responsible for consent forms, what were parents and boys told?

This is essential given your previous letter detailing the paternalistic culture of the day. A paternalistic culture is very different to rules and regulations adhering to the Nuremberg Code. I would remind you I went to Auschwitz as part of my research to compare experiments.

Please refer to Nuremberg Code by name in your letter as the last one avoided doing so. I hope this was an oversight rather than deliberate. Please also read the following article on treatment at Lord Mayor Treloar.

“Justice fight for pupils of Treloar College who were killed by tainted blood”

http://www.express.co.uk/news/uk/592179/blood-hiv-treloar-college-scam-nhs-medicine-positive-hiv

Here is a comment from a public thread on the school I have removed the name of the persons,

Boy 1

“Yes it was disgusting what went on down there. I can give you plenty of instances where they had no regard for pupils feelings. The art teacher who pointed out to all my “classmates” that I had a harelip and therefore was “uneven” much to their laughter. The female member of staf who grabbed me by the throat and slammed my head against a wall over a second hand account of an arguement I’d had with another boy. The housemaster who did not inform my parents that another boy had attacked me so viciously that my glasses cut my ear and then went round telling everyone else I hadnt told my Father. The science teacher who just turned his nose up at all the boys with some sarcastic remark.. The teacher who mimicked a minor speech defect I had untill half the school was doing it..I could go on but I think you get the picture.

Also, when I started at LMTC although the haemophiliacs were the largest single group this was also the time that the kids affected by thalidomide were at secondary school age and some of them went through the school in my year. Some had artificial legs, others were in wheelchairs. In those days artificial limbs were not nearly as sophisticated or strong. I recall one lad  “K” as being in my class . He had the flipper type arms and legs which were commonly associated with their tragedy. 

One day in class..(french to be precise), the eccentric teacher of the time hit  “K” around the head.(jokingly as I recall) with an ancient and heavy book called a larousse. What this was i don’t know but when the blow landed “K” seemed to stagger slightly and then with a snap and a crash, one of his artificial legs broke and he ended up sat there on the floor with legs and trousers disconnected and sat there scratching his head with one of his two fingers and wearing a most bemused expression on his face. He took it in good heart however and someone took him back to the house in a wheelchair for him to put a spare leg on.”

They had obviously not learnt any lessons from the 1975/76 outbreak of hep b when they didnt tell us anything then either. Just made all affected boys walk up to the canteen staff and hand over their own plates with a red spot on them..the plates that is.

I do recall one of my few friends there..A…… ..waking up jaundiced and ill in the bed next to me one morning with that..the day of one of those degrading school medicals.

Andrew died in 1996..

Boy 2

“Hi I am finding your stories whilst at Treloar’s very smiliar to my own having gone to a day school for people with disabilities.  Some of the things that happened were horrendous and as for bullying, well unfortunately I was the main target.  Once I was shuffed in one of those half moon metal waste bins that used to be fixed on the walls.  It was mainly the toilet was, bum would go in first and arms and legs folded up.  I remember sitting there patiently waiting for someone to find me all during assembly – I was a quiet kid and was intimidated alot, so if someone said don’t make a noise, you will get it worse, I would be quiet as a mouse.  My nickname at school was penquin because of the way I walked.”

Boy 3

“But yes your completely right about the bulying that went on Treloars & yes it was still happening through my school days there. Sometimes it’s eats you up but in balance were away from there now & I have (as I hope you may have) made some amazing friendships (that I’ll treasure forever) from there that continue to this day. 

In all the wrongs & rights of Treloars in General (which is a vast & complicated subject) I whole heartedly agree that they should have recognised the bullying problem and dealt with (esp  by some of  the staff  as well as the pupils). There was pretty messed up guys at that place & that also made life quite difficult looking back.

 An acknowledgement that Treloars handled that side of things very badly should also presented but I doubt  this will ever happen.I’m also aware that the bullying when you were there was far more serious & quite soul destroying, as I knew some guys who were there pre 82′.”

Boy 4

“So many sad sad stories where peoples lives have been destroyed, This is disgusting and should not have happened but the fact of the matter is that it has, innocent people have died through no fault of their own, those people being my friends and yours and it is just not acceptable, it really does make me so agitated. While at treloars i developed Hep C along with other haemos, again innocent people suffering through no fault of their own.”

Boy 5

“Dear All,

              can only assure you of my own particular case which was as follows.

              I had never seen or heard of FactorV111 let alone used it before Lord Mayor Treloar College. My parents did not know of it and were certainly never asked for consent.”

(Writes poem about his experience)

Is it just me or am i mistaken,

               words seem to lose meaning or get lost in translation.

               Take the word ”concentrate,” is it the same as ”concentration?”

               ”college” or ”camp,” ”experiments,” ”non consent” or ”legislation.”

               Call it a ”camp” or call it a ”college,”

               experiments WERE done without our knowledge.

I note Andy Burnham former Secretary of State for Health referred to “negligence” earlier this year in parliament in relation to contamination of haemophiliacs with HIV/HCV and Andrew Gwynn also referred to “negligence of public bodies” in the House of Commons last week, both on video. Prior to this at the time of Archer privately funded Inquiry whose recommendations you largely ignored, I was approached by a key advisor to the government admitting his “negligence” with respect to decisions over US treatment. Lawyers used to tell us, “negligence means compensation” not an increase in an ex-gratia payment.

You now have an opportunity to do the right thing and compensate properly as Eire did… except they never used the word negligence so politicians here have actually gone one step further. I also have a document written by a lawyer for haemophiliacs saying the chances of winning for those who had taken US factor concentrates had significantly improved (this was just prior HIV settlement) and was never shown to haemophiliacs who were signing the next day … and this was before we started working on the Nuremberg Code. The lawyers said he could no longer lie to his clients and it appeared some deal was being done to keep the government out of court!

Regarding payments…tell me what would an average pay –out be for vaccine damage for example? I will check it out. I will tell this you, a widow whose husband was infected with vCJD and later died received £3.2 million in compensation… I don’t understand why haemophiliacs and their families are given so minute a payment compared to this?

If you really don’t know what has gone on with regard to the history of contamination in our community (as Andy Burnham said he didn’t when he took office in health due to position of civil servants) then I suggest you meet with someone who has researched this issue in great detail …me perhaps with a campaign colleague and the Chair of the Haemophilia Society so we can discuss the matters arising.

Violating the Nuremberg Code on not one but 10 points is a very serious issue for a government or did the UK abandon both its promise to uphold this and all human rights for haemophiliacs simply because they thought they would get away with it… that vulnerable people would never fight back?

Could you refer me to the specific part of the Nuremberg Code that said it was OK to bleed, sick dying, virally infected and even tortured prisoners because we have evidence of this due to the support of prisoner’s families in the US. To collude and profit from torture is surely a criminal offence!

Let’s face it, “the worst medical treatment in the history of the NHS” and no public inquiry from government when far lesser matters have warranted a full investigation… quite bizarre!

I look forward to your response. I want to hear about the legal and ethical aspects of the first trials in the UK not about “paternalistic cultures” which actually DON’T feature in the Nuremberg Code guidelines!

Yours sincerely

Carol Anne Grayson

The article on the release of documents at the request of Hunt to Grayson can be read on the following link from the Newcastle Chronicle by Sam Volpe dated 30th March, 2022,

Government changed its mind on Infected Blood Inquiry ‘because of pressure from campaigners’

Documents released to a Jesmond campaigner show why the Infected Blood Inquiry was announced on July 11 2017 – and explain the reasons which saw the Government change its mind

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-inquiry-documents-revealed-23536730

Hunt later went on to give evidence to the Inquiry as highlighted in this BBC article from 27th July, 2022

Jeremy Hunt calls contaminated-blood scandal a huge failing of democracy

https://www.bbc.co.uk/news/health-62325578

Today, 28th July 2023, Hunt will again be called to the Inquiry in his role as Chancellor with haemophilia campaigners calling for Hunt to implement the full recomendations on compensation as written by Sir Brian Langstaff.

Infected blood inquiry: Jeremy Hunt to be questioned in worst treatment disaster in history of NHS

He will be quizzed over much-delayed compensation scheme for thousands of victims

https://www.independent.co.uk/news/uk/politics/jeremy-hunt-nhs-infected-blood-inquiry-b2383447.html

Haemophiliacs and their families await to hear whether Hunt will respond in an empathetic way to what Lord Winston described as “the worst medical treatment disaster in the history of the NHS” now considered a major scandal and finally deliver.

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”.

Northern Echo Haemophilia AIDS campaign article, 1987

(Source, Grayson Archives)

In 1986, the Northern Echo newspaper baded in the north-east of England, set up what became an awarded media campaign, the Fight For Justice Campaign working with the Haemophilia Society, MPs, campaigners and some members of the medical profession to gain recognition for the suffering of those with an inherited bleeding disorder infected with HIV. Much of the infection came through the use of imported US factor concentrate treatment manufactured from the pooled plasma collected from “high-risk” sources such as gay men, prisoners, prostitutes, drug users and skid -row donors, though some cases came from UK blood products. Some haemophiliacs went on to infect their partners not knowing their HIV status at that time. The campaign was for a public inquiry, compensation. truth, justice and accountability.

A Westminster Haemophilia debate on 16th November 1987 showed that government were at that time denying “negligence of public bodies” and were unwilling to pay out compensation to those infected especially through US blood products where the UK govenment were resisting the fact that they had the “first line of duty of care” to haemophiliacs regarding their treatment. They were looking instead at giving financial support through a trust which became known as the Macfarlane Trust. There was no Freedom of Information Act in those days to help access information and evidence and lawyers weren’t becessarily in the habit of sharing all the evidence they had obtained with their clients. The November 1987 debate did however also recognize what became known as the “Special Status” of haemophiliacs.

The FALSE narrative from government that long standing campaigners fought to change over the years was that the Contaminated Blood scandal was being portrayed as an “inadvertent infection” and an “unavoidable accident”. As haemophiliacs began to question and discover in the years that followed, this was clearly not the case. The following are excerpts from that debate.

3.30 pm

The Minister for Health

(Mr. Tony Newton)

With permission, Mr. Speaker, I wish to make a statement about haemophiliacs who have become infected with the AIDS virus as a result of treatment with infected blood products. I should explain that I am doing so in the unavoidable absence of my right hon. Friend the Secretary of State, who is unwell.

As the House knows, the position under successive Governments has been that, while compensation may be sought through the courts if there is a question of negligence, there is no state scheme of “no fault” compensation for those damaged by medical treatment.

The Haemophilia Society has, however, put to us a powerful case that the position of haemophiliacs is wholly exceptional and should be treated as such. Their employment prospects and insurance status were already affected by the haemophilia itself. The treatment that led to their infection was designed to help them to live as near a normal life as possible. The hereditary nature of haemophilia can, and in some cases does, mean that more than one member of the same family may be affected.

The Government, having considered all the circumstances, have concluded that it would be right to recognise the unique position of haemophiliacs infected with this virus. We therefore propose to make an ex-gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. It will be able to make payments to the affected individuals and families throughout the United Kingdom, and to do so with greater flexibility than could readily be achieved in any other way.

The House will wish to know that we have put this proposal to the society, which has welcomed it warmly. The society has asked for advice and assistance in administering the fund, which we have gladly agreed to arrange.

The grant of £10 million is being made from the reserve. When the full details of the grant and trust fund have been settled there will be an exchange of letters with the society. I will arrange for copies to be put in the Library.

I know that the whole House wishes to express its sympathy to the individuals and families who have been affected in this tragic way. I hope that the whole House will welcome this action to translate that sympathy into practical help.

Clare Short stated the following,

I welcome the Minister’s undertaking to review the total sum available. No recompense can be made for the harm done to these families by the Health Service because blood was imported from the United States of America when we should have relied upon our own and much better blood products.

Tony Newton highlighted,

Our present view is that the combination of circumstances affecting haemophiliacs infected by the AIDS virus, along the lines that I described in my statement in reporting what the Haemophilia Society said to us, makes theirs a unique and exceptional case, and we feel that it is right to treat it in that way.

At that time the Northern Echo was considered the most high profile and prolific media campaign in the country championing the rights of haemophiliacs infected with HIV of which some had already died of AIDS including Stephen Longstaff, age 20 the brother in law of Carol Grayson, author of this blog, a victim of alleged state negligence in 1986.

Hansard highlighted this,

Mr. Tim Devlin

(Stockton, South)

Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?

Mr. Newton replied,

I am conscious of the feeling about this in northern England, not least because, somewhat unexpectedly, about six or seven months ago I was interviewed on the subject by the Northern Echo. It will be open to the trust to make available money to the widows and other dependants of those who, unhappily, have died from this infection.

Grayson’s family (the Longstaffs) were very much part of the Northern Echo campaign, their goal being for a public inquiry to be set up and for compensation to be paid allowing their harrowing stories to be used to help gain urgently needed financial and other support for the haemophilia community.

(Stockton, South)

Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?

Mr. Newton

https://hansard.parliament.uk/commons/1987-11-16/debates/e96e201d-ee0a-47ce-aa82-22d0cad834a0/Haemophiliacs(FinancialAssistance)

Baroness Cumberlege, then Parliamentary Under-Secretary of State, Department of Health is reported in Hansard 15th March 1995 which discussed the Macfarlane Trust, stating,

The McFarlane Trust was set up in November 1987 with government funding of £10 million and the purpose of making grants and weekly payments to HIV infected haemophilia patients and their families. The work of the fund is regularly reviewed. Its income was increased by a further £5 million in March 1993.

https://hansard.parliament.uk/Lords/1995-03-15/debates/3136fc68-2f99-4dab-bef3-d5a27a8135e6/TheMcfarlaneTrust

Fast forward decades to 2023 where the Macfarlane Trust that haemophiliacs were assured by lawyers representing them in the 1991 HIV litigation would be there “for life” and until the last infected and affected beneficiary remained alive, no longer exists.

In a highly controversial move, the Trust was scrapped in 2018 and the remainder of the monies transferred to the Terrence Higgins Trust (THT), the UK’s largest sexual health charity. This was done by excluding the longest standing haemophilia campaigners (Macfarlane Trust beneficiaries) from a meeting with a government mediator and by sending out questionnaires to elicit opinions that were received by some only AFTER the closing date for submission.

Since then, haemophiliacs have become increasingly disgruntled with THT finding themselves unable to access monies from the Trust and with their voices increasingly cancelled out as THT have appointed themselves as a voice of haemophiliacs whilst understanding very little of their decades long lived experience of HIV and extensive campaign history.

On 28th June 2021, the Ham and High reported on a letter sent to then THT CEO Ian Green from 5 campaign groups which criticised the charity “for its management of money meant to support victims of the scandal” and stated, “it has become quite clear that the involvement of this outside organisation would do more harm than good and is not wanted.” (See full article below)

https://www.hamhigh.co.uk/news/health/21332204.contaminated-blood-campaign-groups-dispute-terrence-higgins-trust/

A further letter was sent by the Haemophilia Society and several campaign groups to Richard Angell current CEO on 11th July 2023.

In addition to earlier concerns is the funding of Jason Evans, who set up Factor 8 Campaign Group in 2018. Evans is known to falsify dates of discovery of documents discovered by this author from the 1990s onwards passing them off as his discovery from 2017 and to rehash many of Grayson’s old press stories as if new. This does not help the fight for truth and justice and lets government off the hook where documents were presented to ministers two decades ago and they faiked to respond, ignoring and blocking the evidence. The letter reads as follows,

Dear Richard

Thank you for your letter of 21 June 2023 in which you make the offer to cover the expenses of a formal mediation process between THT and former Macfarlane Trust beneficiaries who are also members of the Haemophilia Society.

I have consulted with the following who are former MFT beneficiaries, or represent them:

Haemophilia Scotland, Haemophilia Northern Ireland, the Birchgrove Group, Contaminated Blood Campaign, Haemophilia Action UK, Haemosexual, Positive Women and Tainted Blood. Although they do not represent all former MFT beneficiaries, they do represent a majority.

The view of all these groups remains unchanged from those expressed in the letter to your predecessor Ian Green on 20 October 2021. In that letter the signatories requested that THT no longer represents that it speaks on their behalf on any platforms, including the Infected Blood Inquiry and the APPG for Haemophilia and Contaminated Blood.

HIV infection linked to people with bleeding disorders and their partners constitutes a unique narrative, which you acknowledge in your letter has been a point of tension during the years the MacFarlane Trust was in existence and since it was dissolved without community consultation.

The tensions with former MFT beneficiaries and the groups representing them were exacerbated with the announcement last year that research is being undertaken by Factor 8 being funded from THT former MFT monies, without any explanation of what research is being carried out and with what objectives.  It is realised that it is for THT to determine where former MFT funds are directed but regretted that simple requests for information from MFT primary beneficiaries have been ignored.

There are also concerns about claims Factor 8 makes about the provenance of documents uncovered in some cases decades ago by Haemophilia Action UK and that their legal representatives were made aware of these concerns in 2018 and the narrative this offers to politicians of not knowing what was already publicly exposed.

Unfortunately, it has been reiterated to the Haemophilia Society that there is no trust from the former MFT beneficiaries in THT and the offer of formal mediation has been rejected as the groups consulted feel that their views will not be genuinely heard and that their voices will be again silenced and shut down.

Yours sincerely

Kate Burt

Chief Executive, the Haemophilia Society

And on behalf of

Clive Smith, Chair the Haemophilia Society

Bill Wright, Chair Haemophilia Scotland

Simon Hamilton, Chair Haemophilia Northern Ireland

The Birchgrove Group

Contaminated Blood Campaign

Haemophilia Action UK

Haemosexual

Positive Women

Tainted Blood

END

To date Angell has failed to respond.

On Twitter @PositiveWomanF8 unhappy at the lack of response tweeted,

@RichardAngell cannot be bothered to respond to former MFT registrants’ letter dated 11/07/23 SILENCE = CONTEMPT Legal teams @bloodinquiry represent us. Stop taking MFT funds to pay staff. Distribute to needy beneficiaries. TRUTH WILL OUT We are not CASHCOWS

In 2010, Grayson and her campaign colleague Colette Wintle finally succeeded in having the words “inadvertent infection” permanantly removed regarding the infection of haemophiliacs following a meeting with Anne Milton (then Department of Health) where key documents were shown and discussed.

The Newcastle Chronicle reported the words of Sir Brian Langstaff, Chair of the Infected Blood Inquiry on 5th April, 2023, in his interim report, he said,

“It is now accepted that wrongs have been done. The Government was absolutely right to accept this. My conclusion is that wrongs were done on individual, collective and systemic levels. Not only do the infections themselves and their consequences merit compensation, but so do the wrongs done by the way in which authority responded to what had happened.

“Accordingly, a compensation scheme must provide appropriate redress to all those who have been wronged. Time without redress is harm.“

The Prime Minister Rishi Sunak and other ministers are to give evidence to the Inquiry and be questioned in the coming week with Sir Brian’s final report due to be published in the Autumn.

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”

Still of campaigner Haydn Lewis from RTS nominated BBC Newsnight documentary (April, 2007) where Carol Grayson was the official researcher (posted on Youtube by Tainted Blood)

It came as no surprise to long standing campaigners (though a great deal of disgust) that Jason Evans, Factor 8 Group was recently nominated for and won the Sheila McKechnie Foundation (SMF) Campaigner of the Year award. The SMF website states, “it feels it is the right year to recognize Jason’s work. Outstanding work over the past 10 years.” However Evans is known to long standing campaigners including this author Carol Anne Grayson as someone who falsifies Timelines of discovery of evidence to the media thus distorting Contaminated Blood scandal history and plagiarising the work of others.

Grayson lost both her husband Peter and brother in law Stephen both haemophiliacs to HIV/hepatitis C infection through their factor concentrate treatment used to treat those with an inherited bleeding disorder. Much of the treatment was imported from the US. Plasma used in the manufacture of this treatment came from high-risk” sources such as prisoners, gay men, sex workers, “skid row” donors and drug addicts.

Evans campaigns on Contaminated Blood and lost his father to the scandal as a young boy. The 10 year figure of years of campaigning stated by SMF is somewhat confusing as Evans only began campaigning publicly in the media in 2017. In his 3rd statement to the Infected Blood Inquiry under the Chair of Sir Brian Langstaff, Evans himself highlights that, “in or about March 2017, I set up Factor 8 Independent Haemophilia Group” and that “in February 2018 Factor 8 Independent Group was registered at Companies House”.

The nomination of Evans (in the “Who else was involved section”) of the SMF website, appears to have been supported by his lawyers, Des Collins & Dani Holliday at Collins Solicitors, 600 Members of Factor 8, and Dame Diana Johnson MP. Johnson is vice Chair of the APPG Haemophilia and Contaminated Blood. She is also vice Chair of the controversial Labour Friends of Israel, an organization that came under scrutiny in the recently published book, Friends of Israel: The Backlash Against Palestinian Solidarity by Hil Aked. Information about the book on the Verso Book website states,

Friends of Israel provides a forensically researched account of the activities of Israel’s advocates in Britain, showing how they contribute to maintaining Israeli apartheid. The book traces the history and changing fortunes of key actors within the British Zionist movement in the context of the Israeli government’s contemporary efforts to repress a rising tide of solidarity with Palestinians expressed through the Boycott Divestment and Sanctions (BDS) movement. Offering a nuanced and politically relevant account of pro-Israel actors’ strategies, tactics, and varying levels of success in key arenas of society, it draws parallels with the similar anti-boycott campaign waged by supporters of the erstwhile apartheid regime in South Africa.

Friends of Israel

Dame Diana Johnson sat on the ESRC awarded Contaminated Blood research dissertation of this author, Carol Anne Grayson for years despite being sent this and other documents numerous times both by Grayson and her campaign colleague Colette Wintle, a haemophiliac infected with hepatitus B and C. Therefore it appears somewhat hypocritical that Johnson should be supporting Evans who has rehashed much of Grayson’s work without any referencing.

Johnson is seen as a divisive figure by long standing haemophilia campaigners. She breached confidentiality during a mass mailout and was subsequently threatened with legal action. It is alleged that a case may have been won against Johnson with a substantial pay out and a silence clause attached. Knowing that Johnson was vice Chair of Labour Friends of Israel, Grayson asked her why she had failed to highlight and support the case of Palestinian haemophiliacs who were suffering due to being subjected to medical apartheid treatment. The case of Grayson’s friend Jad K Jadallah Tawill is well known to human rights groups, he is Director of the Palestinian Society For Bleeding Disorders (PSBD). 

Grayson also raised her concerns over the alleged use of NSO Israeli Pegasus spyware on campaigners, lawyers, NGOs, journalists and politicians now the subject of legal cases in the UK. Johnson’s response was to weaponize antisemitism, falsely accusing Grayson of “antisemitic conspiracy theories” and blocking her from the APPG Haemophilia and Contaminated Blood. A new publication on this very subject, the weaponization of antisemitism by a faction within Keir Starmer’s Labour Party can be read in what is described as an “explosive” book just now hitting bookshelves. Grayson has just received her own copy. This has not only impacted Corbyn but ordinary human rights campaigners like Grayson standing up for Palestinian rights, see review of this book as follows,

Weaponising Anti-Semitism

HOW THE ISRAEL LOBBY BROUGHT DOWN JEREMY CORBYN

ASA WINSTANLEY

Meticulously researched while reading like a fast-paced thriller, this explosive new book details the way the Israel lobby deployed charges of anti-Semitism to destroy Jeremy Corbyn’s bid for power as leader of the Labour Party.

In an electrifying account, investigative journalist Asa Winstanley shows how Labour’s anti-Semitism crisis was manufactured by pro-Israel groups. Despised and feared by Israel and its allies because of his long-standing support for the Palestine solidarity movement, Jeremy Corbyn became a target of enemies determined to abort his left-wing project.

Drawing on new interviews with many of those victimized in purges the Labour leadership claimed were necessary to tackle anti-Semitism, Winstanley exposes a plot by the Israel lobby, in alliance with the Labour right and Israeli and British intelligence agencies, to prevent a socialist entering Downing Street.

An essential historical corrective, Weaponising Anti-Semitism shines light into the murkiest corners of the British state and those who work with it.

https://www.orbooks.com/catalog/weaponising-anti-semitism/

Back to Jason Evans and the Sheila McKechnie Foundation award. No surprise that Evans won the award. As someone promoting fake timelines he is an asset to government that can then ignore the fact that these damning documents from Grayson accompanied by her campaign colleague Colette Wintle were presented in meetings at Westminster over 2 decades ago. Ministers and civil servants actually acknowledge this fact in internal emails shown to Grayson recently from the Infected Blood Inquiry. They are some of the same documents Evans is claiming falsely were”newly discovered” by him years later from 2017 onwards.

Grayson did manage to elicit changes and apologies from some journalists who altered their articles when shown evidence of the original dates of discovery. Grayson was not able to take complaints further during the course of the Inquiry or legal action as she was informed that this would tie up key documents that could not then be submitted as evidence to the Inquiry and that would have interfered with obtaining truth and justice.

It is worthy of note that the Patron of SMF is none other than former Prime Minister Gordan Brown.

To long standing Contaminated Blood campaigners, the name Gordon Brown is met with disgust as haemophiliacs remember the repeated efforts of sick and dying haemophilia activist Haydn Lewis to get Brown to respond to his letters and concerns, even inviting him to visit his home. Lewis, who was infected with HIV and hepatitis C and had developed cancer, was selfless to the end wanting to ensure justice for the haemophilia community and that his wife Gaynor be cared for after his death. He had endured a liver transplant, only for the cancer to return. Haydn was at that time supporting the Contaminated Blood Bill written by Minister for Disabled, Lord Morris of Manchester which would have put into legislation the recommendations of Lord Archer who was Chair of a privately funded Inquiry and protected both infected haemophiliacs, infected and affected partner/carers and other family members. Archer was set up because successive governments had refused time and time again to fund a full and open public inquiry.

On 2nd February, 2010, a letter from Haydn Lewis was published in the Guardian in response to the article Contaminated Blood Bill Will Bring Justice, it read as follows,

There is only one person who has the power to make this bill law – Gordon Brown. But to date he has never spoken publicly about this issue. Surely no one in full knowledge of this issue, and with the power to make this bill law, could remain silent. The haemophilia community and all infected deserve this wrong to be righted. I write this letter with a current worse-case prognosis of six months due to HCC liver cancer caused by hepatitis C, so to finally hear the PM state his support would mean so much to my family after 30 years of waiting for some accountability.

https://www.theguardian.com/society/2010/feb/02/contaminated-blood-bill-justice-hiv

The BBC reported in May 2010, “Haydn died disappointed that Gordon Brown felt unable to take up an invitation to visit him, to learn about how widows of haemophiliacs often struggle to make ends meet.” Brown showed no interest either in knowing how haemophiliacs were infected as children and the experimentation and treatment trials that took place at Lord Mayor Treloar College a residential school for children with disabilities.

Haemophilia campaigner Colette Wintle wrote on the BBC website at that time,

God bless Haydn and his family at this tragic time. I knew and respected Haydn as a fellow campaigner in what remains a terrible NHS treatment disaster which has stolen so many lives with devastating consequences. like Haydn I am battling with the disease that has robbed him of his life, and I am so angry that his last request to Gordon brown fell on deaf ears, and despite supporting him myself by writing we never had a response. Shame on you Gordon for ignoring the plight of this good man, and every other family affected by this, whom he fought for through his campaigning. In Haydn’s name and the haemophilia community we will not give up the fight for justice.
Colettew

Brown turned out to be a hypocrite in general where females were concerned, not only with regard to bereaved haemophilia widows. He later championed Malala Yousafzai the Pakistani schoolgirl who promoted education for girls but had no interest whatsover in upholding the human rights of girls and women, carers and bereaved partners in the UK haemophilia community harmed through contaminated blood who were subjected to repeated and distressing human rights abuses and testified to such at the Infected Blood Inquiry.

Brown does not appear too interested in the truth either. For years he relied on a false western media narrative that Malala was “shot for going to school” one of the biggest global propaganda statements of recent times assisted by one of the world’s biggest PR companies. This statement was in fact false but it suited the narrative of “saving Asian women” and developing schools on a western non Islamic model in Pakistan. Grayson STRONGLY condemned the attack on Malala but she was NOT shot for going to school.

At the time of the attack, Grayson had been running a website with her mentor Pakistani investigative journalist Saleem Shahzad covering the War on Terror in Afghanistan and Pakistan. Grayson had completed her Masters (Distinction) on Gender, Culture and Development which included a module exploring “media interpretations of the War on Terror” hence her work with Shahzad and the then respected Asia Despatch Online intended to bring honest and challenging reporting from the region. They and other Pakistani journalists regularly received “statements of claim” direct from militants following attacks as they were on their media distribution list. The statement on Malala claimed the opposite, that she was NOT shot for going to school but for allegedly maligning Islam. (This however did not suit western narratives.) Grayson was not the only one claiming this. Beenish Ahmed highlighted the following comment from Ehsanullah Ehsan spokesperson for a key militant group in Pakistan.

In a lengthy statement describing their rationale for taking a gun to the head of an unarmed 15-year-old girl, the Tehrik-i-Taliban Pakistan (TTP) spokesperson Ehsanullah Ehsan wrote, “If anyone thinks that Malala was targeted because of education, that is absolutely wrong, and [the] propaganda of media.” Instead, Ehsan claims, “Malala was targeted because of her pioneer role in preaching secularism and so-called enlightened moderation. And whomsoever will commit so in [the] future too will be targeted again by TTP.”

Brown who is now Chairman of the UN’s Education Cannot Wait fund also failed to mention that many children were prevented from going to school not due to the Taliban but due to the Pakistani army taking over schools to use as military bases in their fight against insurgency and the displacement of thousands in areas such as Waziristan from their homes to refugee camps during military operations. Brown made no comment that schoolchildren in conflict areas were too afraid to attend school on clear days when they could see and hear US drones overhead that often mistakenly targeted civilians, incinerating pregnant mothers and decapitating children, shredding their bodies to pieces. Grayson saw many of these highly distressing photos direct from the scene working with Shahzad who was often on the ground in the Tribal Areas of Pakistan.

Grayson recalls one of her own interviews with Ehsanullah Ehsan (not his real name) and comments on Pakistani schoolchildren when writing on polio vaccinations in Pakistan. In the quest to kill Osama bin Laden, the US had enlisted the help of Dr Shakil Afridi (now in prison). The plan was to use the front of a vaccination programme to attempt to gain access to bin Laden’s compound to extract DNA from a close relative in order to identify it was him and then assassinate him. Aside from killing bin Laden, and because of a “rogue” doctor, the result was that other unfortunate and inncocent polio workers were then targeted as spies and killed. Grayson interviewed the spokesperson in the hope of stopping this and ensuring safety of polio workers who were trying to vaccinate children during a ban by suspicious militants. She asked Ehsanullah Ehsan the following question (extracted from one of her interviews) to which he gave his reply…

Question… What are your thoughts on polio programme?

Answer Sister, we are not opposed to healthcare per se but have to take certain measures to curtail spy operations carried out undercover. We simply cannot ignore spy operations under their cover. Our enemies want to vaccinate our children before droning them.

There have been cases similar to that of Dr Shakil Afridi.

For Allah and His Nabi (PBUH) sake we are willing to sacrifice our lives, vaccination is petty. Drones and Pakistan army killing our children. The ground intelligence is provided to the US by ISI, we have attacked Camp Chapman, others.

Why don’t you get military establishment to end their treachery for Allah & Nabi’s (PBUH) sake? Please visit our areas and check the stats. Our children are not dying of polio but other factors.

The present world order that kills 30,000 children every day wants to vaccinate children – children they will kill later on anyway.

There are many Shakil Afridis and collaborating NGOs on the ground.

Brothers, sisters, we appreciate your naseeha (meaning advice). Barak Allahu fiek (may Allah bless you… Arabic).  We understand the challenges on the ground better. Things will change. Over 30,000 children die everyday around the world owing to the policies of the secular world order.

When your house is raided, you fight. Vaccinations and green tea afterwards.

END

Prior to the Inquiry beginning, this author Grayson was threatened with cancelling out of her own Contaminated Blood campaign history due to her long standing global campaigning on human rights, particularly on the rights of Palestinians. Her honest writing may not be palatable to some whose political motivation is to silence her. The truth can be bleak and disturbing but that doesn’t mean we should not hear it. Grayson’s mentor Shahzad was kidnapped, tortured and killed for his honest reporting, and like Grayson he could not be bought. His name was added to the Journalists Memorial at the Newseum Washington, D.C. he received the Ischia National Journalism award and a street was named after him in Paris, Rue Syed Saleem Shahzad, Wikipedia stated also that,

Pakistan Press Foundation (PPF) on the occasion of World Press Freedom Day announced the annual PPF-Aslam Ali Press Freedom Award-2012 for the slain journalist Syed Saleem Shahzad. The Alfred Friendly Press Fellowships (AFPF) and the Pakistani Press Foundation (PPF) announced the Daniel Pearl-Saleem Shahzad Fellowship in 2012 that would train up to 15 Pakistani reporters in conflict and investigative reporting as well as safety for journalists working in conflict-affected regions. A fellow from Pakistan was be chosen for this fellowship that honors an American and a Pakistani journalist killed in the line of duty while covering a common war against terror in Pakistan.

Jason Evans is allegedly a trained journalist but is the exact opposite of Shahzad regarding honest reporting. Grayson and others recently complained to the Sheila Mckechnie Foundation about Jason’s nomination due to this fact and many examples of his falsification of timelines were previously submitted to the Infected Blood Inquiry. The concern of Grayson and others regarding the SMF award is that it has being given to a person known for rehashing and plagiarising the work of others that deceives vulnerable Contaminated Blood victims which in turn lets government off the hook. Grayson has always presented an honest account of both the history of Contaminated Blood and other global rights and health issues. She refuses to compromise her integrity in giving a true account when writing. She was given awards years ago for what Jason is only now rehashing. What use is campaigning or awards if you can’t tell the truth?

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 visiting No 10 Downing Street to hand in letters early 2000s

During the 1970s and 80s, UK haemophiliacs became infected with HIV and hepatitis viruses as a result of being given factor concentrate treatment provided by the NHS. Some of their treatment was imported from the US, manufactured from pooled plasma collected from the highest risk paid donors, such as prisoners, gay men, skid row donors and sex workers. Plasma pools could be as high as 400,000 donors and it only took one infected donor to infect a haemophiliac. This so called “miracle treatment” included “dumped treatment” seen as not fit for use in the US due to safety concerns and violations.

Over three decades ago, the national Haemophilia Society, campaigners and politicians worked together to highlight to government what was different regarding the haemophilia community infected with blood borne viruses in terms of their case for financial recompense from government. This criteria for haemophiliacs became known as the “Special Status” sometimes referred to as the “Special Case”. It also had implications for affected families, particularly adult partners of haemophiliacs that were financially codependent on those infected and who often became their full -time carers. There are cases of partners such as Clair Walton that also became infected through sexual contact. Partners could also be the main wage earner in the family due to a haemophiliac’s health condition thus losing their own careers. In some cases, children conceived became infected too.

There were also families where those infected were advised not to have children. Parents of haemophiliacs watched their children die, children of haemophiliacs were left without a parent or parents.

The Special Status of infected haemophiliacs recognised that haemophiliacs were a “distinct patient group” taking a specific manufactured treatment called factor concentrates as opposed to lots of individual patients with a variety of different health issues requiring whole blood transfusions such as childbirth, accidents, and emergency surgery.

The Special Status of infected haemophiliacs recognized that haemophilia is an hereditary condition, therefore haemophiliacs were ALREADY disadvantaged in many ways, compromised in health, education, insurance, employment and financial. This was made far worse by multiple additional infections with HIV and hepatitis viruses and also being re-infected over and over again before heat treatment was introduced to kill these viruses. In addition, HIV and hepatitis viruses also massively increased prejudice and discrimination in addition to the (then) stigma of haemophilia.

The Special Status recognized that the infected generation of haemophiliacs often went to special schools such as Lord Mayor Treloar boarding school in Hampshire because of missed schooling in the main education system due to bleeds. The school had specialist treatment facilities on site.

The Special Status recognized that in the 70s and 80s many employers were reluctant to employ haemophiliacs especially in jobs where they were deemed to be at risk of increased bleeding such as trades which required the use of heavy machinery or involved a high level of physical activity. Peter Longstaff was informed he could no longer continue in his employment when it was known he was a haemophiliac in case he injured himself at work. In the case of Colette Wintle she was discriminated against and lost her job as a direct result of having a bleeding disorder.

The Special Status recognized the additional difficulties of having FIRSTLY the hereditary condition of haemophilia PLUS HIV and IN ADDITION haemophiliacs were also infected with multiple hepatitis viruses. This impacted on health, life and travel insurance as well as obtaining a mortgage. It was known to lawyers, doctors and government at the time of the HIV litigation in 1991 that 99% of haemophiliacs with HIV were ALSO infected with hepatitis C (known also as non -A, non -B) and many had already been infected with hepatitis B.

The Special Status recognized the impact of multiple family members with bleeding disorders in the same family being infected as follows,

Hansard 27^th Jun 1991

Mr. Ashley : To ask the Secretary of State for Health how many of the haemophiliacs infected with the HIV virus who have received payments from his Department were related.

Mrs. Virginia Bottomley : Among the haemophiliacs infected with HIV, we understand that there are 65 pairs and six trios of brothers who are infected. We believe there may be a significant number of other cases where HIV-infected haemophiliacs are related, for example, grandfathers, grandsons, uncles and nephews, but these cannot be readily identified from the available information. In addition, there are a number of cases where the haemophiliac’s spouse or partner has become infected.

It is noted that this answer did not even include studies on female haemophiliacs, sisters, grandmothers, granddaughters, aunts and nieces, such was the misogyny at that time.

The Special Status was the reason haemophiliacs were awarded an ex-gratia payment in 1991.

Hansard 20^th December 1991 records,

“The Government recognised the arguments forcefully put to us that HIV-infected haemophiliacs were a special case. I repeat that their lifelong condition of haemophilia—which had already adversely affected their health, social, employment, insurance, and mortgage prospects—was further exacerbated by the onset of HIV.”

The criteria of the Special Status of haemophiliacs is equally applied to haemophiliacs infected with hepatitis B and C but who escaped HIV infection.

In fact, had ALL haemophiliacs been told of their infection with hepatitis C in the late 1989 onwards when a test first became available as used in other countries “to err on the side of caution” they could and should have all litigated for the multiple viruses that infected them alongside HIV, together, instead of deliberate and devastating divisions being created.

We remember that in 1989, the late Peter Mossman launched his case for hepatitis C infection at the same time as haemophiliacs were litigating separately for HIV infections. Others like Colette Wintle, a female haemophiliac with hepatitis C also tried for a case but were denied legal aid. These divisions caused enormous distress to all concerned and were completely unnecessary.

Haemophiliacs learnt years later that hepatitis C was actually pleaded behind the scenes in the 1991 HIV litigation though the dangers were not relayed to haemophiliacs at that time. This resulted in an allegedly illegal hepatitis “waiver” having to be signed by litigants not to take a further case for hepatitis C. Due to key evidence being withheld from haemophiliacs, they could not give “informed consent.”

In early 2000s, a legal opinion was sought by infected haemophiliac Peter Longstaff from Matthias Kelly QC then Head of the Bar Association who on reviewing evidence from the 1991 HIV litigation acknowledged that solicitors acting for Peter Longstaff, “did play-down the significance of hepatitis C” saying that it was “no big deal.”

Referring to the re amended statement of claim, Kelly points out,

“At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”

Matt Kelly QC concludes,

“I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.”

As a result of the knowledge Kelly acquired from viewing the incriminating evidence of the 1991 HIV litigation provided to him by Longstaff and Carol Grayson, his wife and now author of this blog, he was able to go on to have a significant role in devising a financial scheme which became Skipton. So anyone who got a Skipton payment can also remember Grayson’s late husband in gratitude for his part in this regard. Though the introduction of Skipton had the effect of the couple not being able to go to court on the hepatitis waiver which was hugely disappointing.

On the website of Essex Chambers, Kelly’s personal page he states, he became quote,

Chairman of the Hepatitis C Working Party established by the Haemophilia Society in September 2001, to devise costed proposals for a financial assistance fund to recognise the loss and suffering of people with haemophilia resulting from their infection with hepatitis C (HCV). Reported March 2002.

Click to access matthias-kelly-qc.pdf

This scheme became known as the Skipton Fund.

Back to the Special Status, Charles Gore, founder of the Hepatitis C Trust eloquently described the difference between haemophiliacs and those infected by whole blood transfusions in the following paragraph in “Too Little, Too Late, (Therapy Today, March 2012.)

“Those who received whole blood were at some, but fairly low, risk because each unit would have come from just one donor. So someone like the late Anita Roddick, who had a transfusion following the birth of her youngest daughter in 1971, was unlucky to contract hepatitis C. However those who received blood products, such as clotting factors, were at very high risk because these products were made from the pooled blood of hundreds of donors. It only needed one of those donors to be infected to make the product unsafe. Added to that, whereas whole blood in the UK was collected from volunteer donors, much of the blood used to make blood products was sourced from commercial companies and these were mainly in the US, where donors were paid for blood and were often prisoners or intravenous drug users, among whom hepatitis C was very prevalent. Most at risk were haemophiliacs who required multiple treatments with clotting factor. Almost all – about 5,000 of them – were infected with hepatitis C, and about a quarter were also infected with HIV. Inevitably, many of them died. Could more have been done to prevent this? Certainly the risk of blood sourced from paid donors in the US was recognised at the time; the Secretary of State for Health also promised to make the UK self-sufficient in the blood needed for transfusions and treatments, but this was never implemented. Moreover, it wasn’t just haemophiliacs who received clotting factor or other blood products, and similar numbers were infected by whole blood because more people received blood transfusions, even though the risk was smaller. The haemophilia community was the worst affected group, however, and led the campaign for compensation.”

http://www.bacp.co.uk/docs/pdf/15272_therapy%20today%20march%202012.pdf

The term the “worst treatment disaster in the history of the NHS” (Lord Winston, former Vice President of the Haemophilia Society) refers specifically to the haemophilia community as highlighted in Hansard 12^th March 2002 Column 765.

The expression a “criminal cover-up on an industrial scale” stated by Andy Burnham (former Secretary of State for Health) in 2017 refers to evidence highlighted by long standing haemophilia campaigners specifically about infected haemophiliacs. He acknowledged one particular document, the now infamous 1982 Dr Rizza and Dr Bloom “cheaper than chimps” letter as having been sourced by Grayson, now widow of Longstaff and a multi awarded researcher.

Both statements from Winston and Burnham have often been misused by the media to refer to non -haemophiliacs once again causing great distress to the haemophilia community and apologies are still awaited.

The statement, “we are all in this together” has often been quoted in the media by non -haemophilia campaigners. Whilst the Haemophilia Society and haemophilia campaigners have respect for those infected with HIV and hepatitis through whole blood, we cannot be “all in this together” as the Haemophilia Society only has a legal remit for haemophilia, Von Willebrands Disease and bleeding disorders and those infected haemophiliacs who come under the Special Status. To go beyond this would incur problems with the Charities Commission.

Campaigners hope Sir Brian will understand the limitations of the Society in this regard and make clear and separate recommendations for the haemophilia community in his final report.

Campaigners are also aware that there are a growing number of groups and organisations who now claim to speak for haemophiliacs. Sadly, some have complicated issues by failing to record the history of haemophiliacs accurately with correct timelines and dates of discovery and some of the media have published these wrongful narratives causing further angst to haemophiliacs and their families.

The Haemophilia Society is the official body for haemophiliacs working with long standing campaigners and government should respect this and go directly to the Society and campaigners first for any discussions on compensation and they will respond jointly.

Campaigners are claiming back their haemophilia history which to some extent has been hijacked by others and will ensure that the fight for truth, justice and a correct narrative prevails and is recorded for future generations.

The Special Status of haemophiliacs infected with HIV and hepatitis viruses cannot be altered or changed and is as relevant in 2023 as it was 3 decades ago, it refers to a specific group of infected haemophiliacs, a unique patient group during a specific time period of their collective history and that must be understood.

As Anne Milton said in 2010 during a meeting at Westminster with haemophilia campaigners Carol Grayson and Colette Wintle during discussions on haemophilia compensation, “a unique situation requires a unique solution.”

Finally, campaigners would also like to say that they recognize that the life experience of haemophiliacs today prescribed the safest synthetic treatment known as recombinant is very different from the infected generations of haemophiliacs of the 1970s and 80s and celebrate that progress.

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”.