Contaminated Blood: Collins Law and their client’s double standards on pharma company funding causes anger and confusion

US campaigner Ken Baxter (long standing friend of Grayson and her late husband Longstaff) protests at a National Haemophilia Foundation meeting in 1997 regarding one of the pharmaceutical companies that supplied contaminated blood products to haemophiliacs in both the US and UK

(Image via COTT)

Two decades ago haemophiliacs given Contaminated Blood raised the issue of an alleged “conflict of interest” arising from their national Haemophilia Society (the national representative body for persons with bleeding disorders) receiving funding from pharmaceutical companies. This included those companies whose factor concentrate products were responsible for the infection of haemophiliacs and some of their partners with HIV and hepatitis viruses during the 1970s and 80s.

On the 24th August 2001, this author Carol Grayson and her partner, Peter Longstaff, a severe and infected haemophiliac (now deceased) collaborated with the Newcastle Journal as part of their joint Bad Blood campaign on an article which highlighted some of the difficulties of that time, titled, Haemophilia Society faces revolt from Sufferers: Record which shames a nation. As a result, the Society did take note and progress was made. The organization promptly reviewed and tightened up its funding policy. At one stage, the Society was struggling to keep afloat due to the government withdrawing funding from many charities including their own. Although the organization does still receive some money from pharma companies it is under much stricter guidelines these days and with far greater transparency than in the past.

Jason Evans, the son of a haemophiliac who died after receiving contaminated blood, appeared on the public scene as a new campaigner around 2016 and later founded Factor 8 Group. Years after Grayson and Longstaff first expressed their concerns, Evans followed, highlighting his concerns regarding the Haemophilia Society funding from pharma companies and what he regarded as a potential “conflict of interest”. He then publicly resigned his membership with other haemophiliacs soon joining him. The following comments were released on the Factor 8 group website,

Since the inception of the Inquiry, Factor 8 and many of it’s members have contested The Haemophilia Society’s attempted public positioning that it “represents” the interests of those infected / affected, or at least, solely those interests.

This is because The Haemophilia Society has received well over £1 Million in combined funding from Pharmaceutical Companies and the Department of Health, since the time the Contaminated Blood Scandal unfolded. Today, the Society remains in receipt of funding from global Pharma giants (or those who took over their predecessors) who caused many of the infections through infected Factor VIII & IX plasma products in the 1970s and 1980s. For these and other reasons, The Haemophilia Society is alleged to be at gross conflict of interest.

Conversely, Factor 8 forbids any financial contributions from the pharmaceutical industry in order to maintain total independence. Jason Evans (Founder of Factor 8) said:

It is crucial in my view that any organisation claiming to represent any group in this realm is completely free from any potential conflict of interest. Only this week for example, Factor 8 was again approached to consult for a major company with interests in the Haemophilia market, their offer was declined as will future offers.

https://www.factor8scandal.uk/campaign-history/2019/1/28/sir-brian-langstaff-says-the-haemophilia-societys-claims-are-without-foundation

Collins Law, the legal firm representing Evans stated the following on its website,

Department of Health / The Haemophilia Society

Department of Health

The Department of Health oversaw the events throughout the time of the Contaminated Blood Scandal and is ultimately the Government department responsible for the disaster. It is alleged that the Department did not act properly to prevent the scale of infection, issued misleading public statements and subsequently destroyed or “lost” some of the key evidence whilst denying Truth & Justice to those affected.

The Haemophilia Society:

The Haemophilia Society was established in 1950 and still exists today. During the material time of the Contaminated Blood Scandal, it is alleged that The Haemophilia Society issued wrong advice to those with Haemophilia and had entered into financial agreements with the Pharmaceutical companies that produced and distributed the infected Factor VIII and IX products. It is believed some of The Haemophilia Society’s medical advisers had also entered into similar agreements.

Today, The Haemophilia Society still receives large amounts of money from a number of those pharmaceutical companies and others. The person that The Haemophilia Society has hired to lead their involvement in the Public Inquiry (Debra Morgan) has spent almost two decades working in the Pharmaceutical industry including for the companies Pfizer and Merck, both of which were involved in the Contaminated Blood Scandal.

For the above reasons and others, it is our clients’ view that The Haemophilia Society has a gross conflict of interest and should not claim to represent the interests of any of those infected or affected at the Public Inquiry.

END

https://collinslaw.co.uk/contaminated–blood-doe

So it is with some surprise that other haemophilia campaigners learnt that Jason Evans will now have a new role commissioned by the Terrence Higgins Trust. The charity now claims to represent some haemophiliacs after monies from the Macfarlane Trust set up by government for those haemophiliacs infected with HIV and their families, including infected partners were transferred to THT.

Factor 8 website quotes THT Newsletter as follows,

we have commissioned Factor 8 to conduct research and communications work on behalf of the Macfarlane Community over the next two years. Factor 8 will continue to operate independently of Terrence Higgins Trust and any other organisation.

What THT may not be aware of is that Evans has repeatedly rehashed stories from Grayson and documents in the media discovered and released by her into the public domain minus any referencing. She is a a multi awarded researcher of over 3 decades presented with the Economic and Social Research Council, (ESRC) Michael Young Prize for her dissertation on Contaminated Blood. (The Michael Young Prize was usually awarded for PhD research but in the case of Grayson was awarded at Masters Level.) Grayson worked alongside the late Sir Patrick Jenkin to secure and preserve all blood policy documents held by government, at the National Archives at Kew and all other government archives. They obtained a commitment in 2005 not to destroy these documents in case of a Public Inquiry. The Infected Blood Inquiry have confirmed to Grayson that they have full access to documents Grayon and Jenkins saved at NA Kew and other archives so there has been no need for Evans and others to obtain these documents under Freedom of Information other than for personal interest as it is simply duplicating access to documents.

Evans has plagiarised much of Grayson’s work, claiming documents she found and showed to government officials two decades earlier were discovered by him from 2017 onwards thus creating a false Timeline of who knew what and when. The changing of the Timeline of discovery only serves to allow those who were sent or presented with damning evidence in face to face meetings at Westminster off the hook. This is a very strange and conflicting position for Evans who recently gave a speech at the newly launched Public Accountability APPG claiming he supported the need for a “Hillsborough Law” and the importance of “accountability” regarding those harmed by public bodies. How do you achieve accountability, truth and justice with plagiarized research and a false Timeline? However, Jason’s actions do not appear to worry Ian Green, Chief Executive of THT who said,

‘Jason’s work and the contribution of Factor 8 in the Inquiry process has been a game changer. It is important that their research, vital communications work and advocacy continues as the inquiry hearings conclude and the work to implement inquiry recommendations begins. I am pleased we have struck up a partnership and confident it will be impactful for the Macfarlane Community’.

Now, in a case of stunning hypocrisy on the part of Evans, this author has become aware that THT received funding in 2007 from none other than Pfizer, the world’s largest pharmaceutical company as highlighted in the following press release on 3BL CSR titled, Terry Venables Kicks Off First Pfizer UK Foundation Symposium. Here the following can be seen,

Terrence Higgins Trust’s FASTEST HIV Testing Service: Funding from the Pfizer UK Foundation has supported the Terrence Higgins Trust FASTEST clinic in Birmingham for 12 months, providing rapid result HIV testing and counselling for African communities in a confidential and non-threatening environment.

THT Annual Report for 2021 which can be found online also shows funding from ViiV in the Restricted Fund Section (page 60)…

Wikipedia states,

ViiV Healthcare (/viːv/ VEEV) is a pharmaceutical company specializing in the development of therapies for HIV infection that was created as a joint venture by Pfizer and GlaxoSmithKline in November 2009 with both companies transferring their HIV assets to the new company.[1] In 2012 Shionogi joined the company. 76.5% of the company is now owned by GlaxoSmithKline, 13.5% by Pfizer and 10% by Shionogi.[2] This ownership structure may change depending upon the achievement of certain milestones.[1]

ViiV Healthcare’s products have a market share of approximately 19%[3] of the global HIV market, making it the second-largest healthcare company, after Gilead Sciences, which is working on the treatment of HIV.[4]

https://en.wikipedia.org/wiki/ViiV_Healthcare

THT annual report also lists funding from Gilead on page 68.

So Collins Law and Evans called out the Haemophiliac Society for receiving funding from pharma companies, leading to Evan’s resigning his membership yet have no issue in collaborating and working jointly with THT that get funding from the same pharma company Pfizer. This demonstrates a somewhat conflicting moral standpoint and causes great confusion amongst haemophiliacs and their families especially as some left the Society following Collins and Evan’s much publicised standpoint.

Colette Wintle, a haemophiliac infected with hepatitis B and C through Contaminated Blood and a campaign colleague of Grayson, said, “I have to say that I find it staggering that Jason Evans who has been critical of the Haemophilia Society for accepting pharmaceutical funding, is now demonstrating double standards and hypocrisy by working with THT who themselves are being funded by the same pharmaceutical companies!” She, Longstaff and Wintle have always campaigned using their own savings, Grayson strongly rejected pharma company money offered to her in the past and the pair have never actively approached other haemophiliacs to fund their campaigning of over 3 decades.

The THT move to fund Evans has caused outrage amongst some within the haemophilia community with regard to him being “comissioned” and how Trust money is spent. Grayson has learnt complaints have been launched by other campaigners. Questions are still to be answered with regard to whether the move by government to scrap 5 Trusts including the Macfarlane Trust and the transfer of Macfarlane monies to THT was even legal. The government once again lied saying all registrants had been consulted on disbanding the Trusts. This is not correct, long standing campaigners discovered that they had been deliberately left out of a consultation with a government mediator to discuss the move. A fellow haemophiliac relayed a conversation that the meeting was not to include Grayson and Wintle.

An FOI by Grayson showed her group Haemophilia Action UK was missing from a government list of campaign groups. This is astounding given her group was one of the first campaign groups to be founded and recently released internal government documents show civil servants discussing her evidence multiple times throughout the 2000s and how to handle her. This was evidence that Evans claimed he “discovered” from 2017 onwards, years after Grayson confronted officials with her findings. Wintle was also mentioned by government officials in relation to her campaigning. It was clear the pair were a thorn in the side of government. Another colleague of theirs, Peter Mossman who co founded the Manor House Group was also missing from the government list. Questionnaires sent to registrants of Macfarlane to obtain their views on getting rid of the Trusts were only received by Grayson and Wintle AFTER the deadline to return completed forms.

Whilst Evans embarks on a research role funded by THT, Grayson is still to have years of back money paid by the Macfarlane Trust after she was wrongly means tested in relation to monthly payments she received. Despite numerous complaints to the Trust including a solicitor trustee when the mistake first occurred, this was not corrected. The mistake has finally been admitted by government and the Cabinet Office pointed her back to THT to sort out the missing money (which has been calculated by her lawyer) as they took over Macfarlane funds.

To return to the case of Evans using documents discovered by Grayson unreferenced claiming a different and much later date and the implications of this, these were documents that at the time of writing her dissertation were not yet released by Grayson into the public domain and back to the Dept of Health, later transferred to the National Archives at Kew. The legal letters of return regarding Grayson instructing her lawyers on this matter were destroyed by government solicitors but she retained copies. There are ongoing issues with the failure of Kew to reference Grayson’s documents correctly and to include a history page though they have said this would be addressed when government transfer all copies digital and hardcopies, otherwise its another legal case against government.

Alka Kurian, a tutor at Sunderland Univesity provided a reference in relation to Grayson’s research work and document discovery shortly after completion of her dissertion in 2006, also supported by Lord David Owen former Minister for Health, who refers to Grayson as the “oracle” of Contaminated Blood.

REFERENCE  FROM ALKA KURIAN, DISSERTATION SUPERVISOR, MA GENDER, CULTURE AND DEVELOPMENT, SUNDERLAND UNIVERSITY

It gives me great pleasure to write this reference for Carol Grayson who did her MA in Gender, Culture and Development at the University of Sunderland from 2005-06. Through the academic year, she came across as an exceptionally bright, assiduous, and meticulous person and maintained a consistent record of excellent grades, an achievement matched by a distinction for her dissertation.

In her very impressive dissertation that she wrote under my supervision, Carol explored the politics of the international market of blood and its impact on British haemophilia community. Her work focused in particular on the controversial case of UK haemophiliacs who had contracted HIV and hepatitis viruses as a result of being given contaminated blood products imported by the NHS from US prisons. Her findings were based on a combination of an exhaustive and lengthy piece of empirical enquiry as well as a painstaking examination of blood policy documents going back to 1960s.

The passion with which Carol pursed her research work did not in fact end with her dissertation; with the aim of bringing justice to the victims of the callous negligence of the State and health care services, she has since reached out to the ministry of Health, Human Rights organisations, leading broadcast, media, and community organisations in Britain and abroad to spread the word about the scandal of contaminated blood. I wouldn’t be wrong in asserting that she has single-handedly begun a ‘movement for justice’ for these victims and their families and we now wait and see the results of her tireless efforts in this area.

As a student and researcher, Carol demonstrated an exceptional talent in grasping, investigating, analysing, and articulating complex concepts. She often pushed the boundaries and went beyond the requirements of a graduate student in researching, exploring, and appropriating extensive knowledge in a wide range of areas. Given her intellectual capability combined with original thought, ability to boldly articulate her mind, tireless zeal for academic excellence, perseverant commitment towards and active participation in issues that are at the cutting edge of knowledge, I am confident that she has the potential to make substantial contribution in her area of interest. I strongly recommend her application for a doctoral thesis that she is applying for. I have no doubt that she will be an asset to your institution and will certainly meet the demands of this very challenging work.

Please do not hesitate to get in touch with me for further information if required.

Thanking you,

Yours sincerely,

Alka Kurian

Chris James former CEO of the Haemophilia Society wrote of Grayson.

I have known Carol Grayson since joining the Haemophilia Society as Chief Executive in 2007.

Carol has been a prominent campaigner on the issue of contaminated NHS blood losing her husband to the tragedy in April 2005. She has worked as a campaigner/researcher both in the UK and also globally by linking with campaigners across the World most notably the USA and China.

In 2007 Carol completed her MA Dissertation into the “Impact of the Global Blood Trade on UK Haemophiliacs” which brought together many strands of her research in a meticulous and detailed analysis of thirty years of UK blood policy and practice. This dissertation received the Economic and Social Research Council Michael Young Award 2009, an occasion which I myself was privileged to attend and in which I was extremely impressed by the very high quality shortlist.The evidence that she has painstakingly researched over many years has been used in two legal cases, a Judicial Review against the Secretary of State for Health and an ongoing case for a haemophiliac with hepatitis C infection. Carol’s research study was also submitted to Lord Archer of Sandwell’s Independent Public Inquiry into contaminated NHS blood to which she gave oral evidence.

I think in her body of work on this issue Carol has shown herself highly suitable for postgraduate training. Her dissertation shows a high level of academic ability and analytical reasoning. There can be no question of her motivation and perseverance in achieving her objectives. This is also borne out by the presentation and media work that she had carried out as part of the contaminated blood campaign. I have no hesitation in recommending Carol for this PHD.

END

Grayson was offered a funded PhD place at Northumbria University (on her doorstep) but was unable to take it up as campaigning took up most of her time and it was impossible to do both with ongoing health issues that arose due to her caring for her late husband Peter for 2 decades. Grayson has other awards and nominations for her work.

Lord David Owen provided a reference for Grayson for the ESRC Michael Young award. Grayson was able to return some copies of documents to Lord Owen regarding his fight for the UK to be self sufficient in blood and blood products which government had trashed. These documents and many others from Grayson’s research were submitted to the Archer Inquiry and the Penrose Inquiry (and appear on Collins website though no reference to the fact that she discovered and submitted these documents to these earlier Inquiries) and then later to the current Infected Blood Inquiry as evidence. Grayson was put forward for the ESRC award by Dr Stuart Hodkinson, Leeds University where she was used as a “motivator” lecturing students on the groundbreaking MA in Activism and Social Change on how to combine activism and academia.

Lord David Owen Reference for Michael Young Award

“I fully support Carol Grayson’s submission for the Michael Young Prize.  She seems to me to fit many of the characteristics that Michael always wished to support.  She started to investigate the connection between haemophiliac patients and HIV/AIDs when her husband became infected and since then, despite daunting difficulties, and whilst caring for her dying husband, she has gained a distinction in her MA.  I have read her excellent thesis and indeed used it in the Public Inquiry into contaminated blood products held by the former Attorney General, Lord Archer.  She now wants to go on to do a PhD but because she does not fit the normal profile of a PhD student is having difficulty in raising funding.

Carol has a record of a doughty and influential campaigner on a very important social political issue.  I have a couple of large files which demonstrate her persistence but more importantly her readiness to try to find the truth and seek out the facts on which to base her campaign.  I have been extremely impressed by her inner capacity for scholarship and have watched an untrained mind develop into a skilled research worker and there is clearly much more potential within her which could be tapped through a PhD study.  I thoroughly recommend her application.”

                                                                                                                                      Lord Owen

Returning to the Haemophilia Society, in an effort to move forward after mistakes of the past and in the process of reconciliation and the potential of future collaborative work, Grayson and her campaign colleague Colette Wintle worked with Jeff Courtney (Policy and Public Affairs Manager) on an apology statement with regard to past actions. In 2017, Grayson released the following statement,

QUOTE REGARDING HAEMOPHILIA SOCIETY

“In my many years of campaigning I have been one of the Haemophilia Society’s most fierce critics due to their serious lack of judgement, sometimes appalling attitude to haemophiliacs and families,“conflict of interest” receiving money from pharmaceutical companies that contaminated victims, trashing of documents, failure to listen to warnings and failure to act in time to prevent harm which has had sometimes dire consequences. Those who behaved in this way should be held accountable.

There are now new staff there who were not implicated in the action or lack of action of the past. In 2017, fellow campaigner, Colette Wintle and I worked with Jeff Courtney, Policy and Public Affairs Manager over many months going through the history of the Society with him and advised that the Society release an official apology which was the only way we could move forward in the spirit of truth and reconciliation. This was forthcoming in March 2017 and is now on their website for all to see. The statement included “comment on the actions and statements of the Haemophilia Society at the time” for which the Society issued “an unreserved apology” below,

http://haemophilia.org.uk/wp-content/uploads/2017/03/Board-Statement-on-Contaminated-Blood-March-2017-1.pdf

The Haemophilia Society statement on “How we are funded” can be read here,

The coming days will be important in terms of how any complaints over THT use of funds are handled. It is understood meetings will take place to discuss concerns this week with haemophiliacs and family members airing their views. Further information on the work Evans will undertake is being released to those who were previously registered with Macfarlane Trust according to emails Grayson received from THT.

An experienced charity leader told this blog,

The Association of British Pharmaceutical (APBI) code of practice which governs relationships with, among others, charity patient organisations is one of the most rigorous in the world. The principles include: acting with integrity, promoting transparency

Charities are highly regulated by the Charity Commission to ensure they behave with integrity and uphold fundraising best practice. Many charities operate a strict ethical partnerships policy and all charities have to submit detailed annual accounts to the Charity Commission and Companies House, being fully transparent on sources of funding and how they are spending funds responsibly. Not for Profits who are not registered charities are not subject to this level of scrutiny.

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”

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Contaminated Blood: The problem of the non anonymous “anonymous” Infected Blood Inquiry witnesses

Some campaigners are claiming “anonymity” at the Infected Blood Inquiry but outing themselves on social media

(Image Grayson Protest Archives)

The Contaminated Blood scandal has traumatised those who were infected with HIV and hepatitis viruses through their haemophilia treatment and their affected family members. It is a person’s right to speak out on the impact on their lives publicly if they wish to do so and also for another person to chose to remain private. The Infected Blood Inquiry chaired by Sir Brian Langstaff and set up in 2018 to examine how haemophiliacs came to be infected through their factor concentrate treatment during the 1970s and 80s has respected that right for the most part from the opening stages.

A sharp lesson was learnt at the beginning of the Inquiry regarding respecting privacy and informed consent following a conference call with this author Carol Grayson and her campaign colleague Colette Wintle. The pair understood they would be talking to Sir Brian and that he and the secretary to the Inquiry would be the only ones participating. However, the Inquiry failed to notify them that several other persons had listened in on their long telephone conversation unannounced until the very end of the discussion. This revelation created distress and mistrust in Grayson and Wintle who had already learnt from life experience over decades of campaigning that when you trusted individuals or organisations related to the blood scandal, you would inevitably be let down with a few rare exceptions. As a result, it had become very difficult to trust anyone and the pair almost pulled out of any participation in the Inquiry altogether. Fortunately reassurances were given after a complaint was made and an apology given and they are now 4 years down the line of the Inquiry process.

The Inquiry has treated infected and affected with a great deal of care and consideration. Many witnesses had experienced years of discrimination, prejudice and abuse because of their infections. Therefore every effort has been made by Inquiry staff to protect those who wished to remain anonymous and keep their identity hidden which is how it should be. Warnings are read out with regard to protecting witnesses. There is a 3 minute delay in the live stream to the public in case someone slips up and mentions a name, or other identifying features. Sometimes witness sessions are held in private and not livestreamed at all.

However sadly, there are clearly some witnesses involved in the Inquiry that are “taking the piss”. Despite their “anonymous” status with the Inquiry, they are all over public social media pages making comments under their own names, sharing photographs of themselves, discussing the Inquiry, their evidence, Inquiry evidence, personal health and other issues for the whole world to see. Some even discuss their Inquiry “anonymity” in public. It has become a joke!

Some of these witnesses have behaved in controversial ways where usually it would be possible to enter into a debate and challenge certain viewpoints. However their so called “anonymity” makes it virtually impossible to have have a normal discussion for fear of anything leaking out regarding their status. Whilst other Inquiry participants are expected to walk on eggshells, they remain protected despite “outing” themselves time and time again. Their double standards regarding anonymity gives them an unfair advantage over others when it is perfectly obvious from their own information posted that they are also contaminated blood victims or their family members. The lawyers representing the “anonymous” know how they are behaving and their hypocrisy but they are also stuck. It is so tempting to name these individuals who have so little respect for the Inquiry process but then there would be repercussions for this author. A person is either anonymous or they are public, some however seem to want it all ways!

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.

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Contaminated Blood: Alpha, Green Cross and alleged Japanese war criminals…Unit 731

Haemophiliac Pete Longstaff just prior to his death, who was a recipient of Alpha Therapeutic contaminated blood products and was horried to learn of the parent company links to alleged war criminals at Unit 731, Manchuria, China
(Image, Archives Newcastle Journal, related media, Bad Blood campaign.)

Open email to the Infected Blood Inquiry, 24th October 2022 sent by this author and core participant to the Infected Blood Inquiry chaired by Sir Brian Langstaff

Dear All, (VERY IMPORTANT… Alpha Therapeutic, Abbot, Green Cross, Unit 731, Manchuria, China)

A reminder in case the Inquiry forgot this evidence as I sent information early on in the Inquiry investigations. (Alpha Therapeutic was one of the 4 pharmas named in US litigation which Pete and I persuaded US Law firm LCHB to take on re UK haemophiliacs.) I strongly urge you to read about the extent of the experimentation and watch the video.

I am sending these articles as I have not so far heard the Inquiry mention the fact that alleged Japanese war criminals that carried out the most horrendous unethical, torturous and deadly experiments in Unit 731 (Manchuria, China) had key roles in founding and running one plasma company, Japanese Green Cross. Alpha, a US company whose products were used in the 1970s and 80s on my Pete and others was a subsidiary of Japanese Green Cross which was the parent company. The Americans gave those Japanese who committed terrible crimes immunity (from prosecution) in exchange for the data from the experiments which no ethical person or company could ever undertake on live human subjects. My husband Pete was deeply disturbed after we spoke with Japanese haemophiliacs in the early 2000s about their legal cases (some haemophiliacs in the US too) and more came to light on Unit 731 in 2002. Pete received Alpha products in the 1970s when some (now old men) were still working with Green Cross, Alpha, at the time Pete had Alpha products and they had received high praise from Americans working in the plasma industry (at least prior to the legal cases that were to follow!!!)

There is some reference in the Douglas Starr book, Blood: An Epic History of Medicine and Commerce to the Japanese war criminals but the book was published in 1998 before the 2002 revelations came out… and Ryoichi Naito lied about the extent of the experimentation. A number of these men from Unit 731 were involved in the plasma industry. There were allegations Japanese haemophiliacs were delayed in receiving heat treated products so when they became infected, doctors/scientists could study the progress of AIDS. Learning about Alpha Therapeutics and Japanese Green Cross was another strong influence on Pete, instigating and maintaining his treatment strike for recombinant and refusing human plasma until his death in 2005. I got hold of a book written on Unit 731 which I still have somewhere and it is one of the most horrendous books I have ever read with enormous suffering caused to human test subjects, men, women, children and babies which rival Dr Mengele and his team in Auschwitz in their horror and cruelty and in some instances surpassed the Nazi experimentation. Far greater numbers of doctors/scientists were involved in experimentation numbering thousands.

  • Green Cross is a foreign corporation organized under the laws of Japan and is the parent corporation of Alpha. Alpha was established by Green Cross in 1978. Green Cross acquired the Abbott Scientific Products Division (ASPD) from Abbott Laboratories, Inc. in 1978 and transferred the assets of ASPD directly to Alpha.
  • Gruca v. Alpha Therapeutic Corp., 19 F. Supp. 2d 862 (N.D. Ill. 1998)
  • US District Court for the Northern District of Illinois – 19 F. Supp. 2d 862 (N.D. Ill. 1998)
    September 3, 1998

https://law.justia.com/cases/federal/district-courts/FSupp2/19/862/2530386/#:~:text=Green%20Cross%20is%20a%20foreign%20corporation%20organized%20under,transferred%20the%20assets%20of%20ASPD%20directly%20to%20Alpha.

AKAMATSU, Japan, Aug. 14 Kyodo

The late founder of scandal-plagued Green Cross Corp. urged that activities of a secret germ warfare unit in China be concealed from Allied forces immediately after World War II, according to a letter written by a unit leader.

Ryoichi Naito, a former surgeon with the rank of lieutenant colonel in the defunct Imperial Japanese Army, made the suggestion later adopted by leaders of the notorious Unit 731 to hide its activities from Allied investigators documenting war crimes, according to the letter.

The five-paged letter was penned by Col. Tomosada Masuda, who served as one of the unit’s commanders, at his hiding place in Chiba Prefecture on Nov. 9, 1945, using brush and ink on army stationery.

It was addressed to the late Lt. Col. Seiichi Niizuma, who oversaw scientific information at the wartime Army Ministry’s military affairs department.

Unit 731 was active from 1936 in former Manchuria, now northeastern China. The unit is believed to have conducted germ warfare against the local population and used some 3,000 Chinese, Russians, Mongolians and other prisoners of war (POWs) as test subjects for bacteriological experiments.

The letter said Naito advised the unit’s senior officers to volunteer any information during interrogation except details about its use of human guinea pigs, germ warfare and its failed plan to attack the United States using bacteria and viruses.

https://www.thefreelibrary.com/Green+Cross+founder+hid+info+about+Unit+731%3A+letter.-a053002589

World War 2 Database

Ryoichi Naito

Quote,

Lieutenant Colonel Ryoichi Naito, a medical doctor specializing in microbiology, was a high ranking officer with the Epidemic Prevention and Water Purification Department (Unit 731) of the Japanese Army. In the 1930s and early 1940s, he operated in northeastern China, where he participated in programs involving pathogen weaponization and human experimentation. In mid-1942, he was made the second scientific head of OKA 9420 headquartered in Outram Park, Singapore (now the building hosting the Singapore Ministry of Health). Under his leadership, OKA 9420 spread to additional sites in Malaya (Permai Hospital in Tampoi, Johor, and a school in Kuala Pilah, Negeri Sembilan), employing about 150 physicians. His primary task was to prevent the spread of tropical diseases among Japanese military personnel; his team also ventured on side projects such as the creation of an anti-tetanus vaccine. Secretly, he also operated a major laboratory operation that cultivated pathogens such as bubonic plague, cholera, smallpox, malaria, typhus, dysentery, and anthrax. Under his direction, tens of thousands rats were trapped locally and brought in from abroad. These rats were injected with diseases and then fed to fleas; the fleas would then be used directly as weapons. The operation fled Singapore in Jun 1945 to Laos, far ahead of a possible British return. Naito was among the Unit 731 officers who were granted immunity by the Americans after the war, in exchange of the knowledge obtained through inhumane methods that the Americans could not conduct. He went on to have a successful career, cofounding the firm Japan Blood Bank (now the pharmaceutical firm Green Cross Corporation) in 1950; some of the fellow cofounders were also former members of Unit 731. He passed away in Jul 1982. In 1998, it was discovered that he had lied to the American occupation, saying that Unit 731 had never used humans in experiments.

https://ww2db.com/person_bio.php?person_id=1091

Unit 731

https://en.wikipedia.org/wiki/Unit_731

Video Unit 731

Japan’s Secret World War II Death Lab (2003)

Green Cross founder tied to Unit 731 preservation (Japan Times, August 14th 1998)

Quote,

The founder of Green Cross Corp., an Osaka-based pharmaceutical firm, played a major role shortly after World War II in preventing senior members of Unit 731 from being prosecuted as war criminals, it was learned Friday.

Ryoichi Naito, a physician and key member of the unit, drafted a plan in which unit leaders would hand over to the U.S. military most of the information related to the unit’s efforts to develop biological and chemical weapons.

https://www.japantimes.co.jp/news/1998/08/14/national/green-cross-founder-tied-to-unit-731-preservation/

Lawsuits[edit]

In May and October 1989, HIV-infected haemophiliacs in Osaka and Tokyo filed lawsuits against the Ministry of Health and Welfare and five Japanese drug companies. In 1994 two charges of attempted murder were filed against Dr. Takeshi Abe, who had headed the Health Ministry’s AIDS research team in 1983; he was found not guilty in 2005.[citation needed] Abe resigned as vice-president of Teikyo University.[citation needed]

In January 1996, Naoto Kan was appointed Health Minister. He assembled a team to investigate the scandal, and within a month nine files of documents related to the scandal were uncovered, despite the Ministry of Health’s claims that no such documents existed. As Minister, Kan promptly admitted the Ministry’s legal responsibility and formally apologised to the plaintiffs.[citation needed]

The reports uncovered by Kan’s team revealed that, after the report about the possibility of contamination, untreated blood products were recalled by the Japanese importer. However, when the importer tried to present a report to the Ministry of Health, it was told that such a report was unnecessary. The Ministry claimed that there was a “lack of evidence pointing to links between infection with HIV and the use of unheated blood products.” According to one official, “we could not make public a fact that could fan anxieties among patients” [J.E.N].[citation needed]

According to the files, the Ministry of Health had recommended, in 1983, that the import of untreated blood and blood products be banned, and that emergency imports of heat-treated products be allowed. A week later, however, this recommendation was withdrawn because it would “deal a blow” to Japan’s marketers of untreated blood products [Updike].[citation needed]

In 1983 Japan imported 3.14 million litres of blood plasma from the US to produce its own blood products, as well as 46 million units of prepared blood products. These imported blood products were said to pose no risk of HIV infection, and were used in Japan until 1986. Heat-treated products had been on sale since 1985, but there was neither a recall of remaining products nor a warning about the risks of using untreated products. As a result, untreated blood preparations stored at hospitals and in patients’ home refrigerators were used up; there have been cases reported in which individuals were diagnosed with haemophilia for the first time between 1985 and 1986, began treatment, and were subsequently infected with HIV, even though it was known that HIV could be transmitted in untreated blood preparations, and treated products had become available and were in use at that time.[citation needed]

As early as 1984, several Japanese haemophiliacs were discovered to have been infected with HIV through the use of untreated blood preparations; this fact was concealed from the public. The patients themselves continued to receive “intentional propaganda” which downplayed the risks of contracting HIV from blood products, assured their safety, and promoted their use. Of some 4500 haemophiliacs in Japan, an estimated 2000 contracted HIV in the 1980s from untreated blood preparations [J.E.N].[citation needed]

Charges[edit]

Main article: SCOJ 2005 No. 947

Renzō Matsushita, former head of the Ministry of Health and Welfare’s Pharmaceutical Affairs Bureau, and two of his colleagues, were found guilty of professional negligence resulting in death. Matsushita was sentenced to two years in jail. A murder charge was also brought against him. Matsushita, who after retirement became president of Green Cross, is one of at least nine former Ministry of Health bureaucrats who have retired to executive positions in Japan’s blood industry since the 1980s (see ama kudari).[citation needed]

Read on…

https://en.wikipedia.org/wiki/Contaminated_blood_scandal_in_Japan

If I remember correctly, Abe was president of Alpha Therapeutics. (Need to check?)

Japan arrests doctor in case of bad blood (New York Times, August 30th, 1996)

Japan blood supplier, Facing HIV penalty to be acquired (New York Times, Feb, 25th 1997)

  • Abe, central figure in HIV-tainted blood products scandal, dies (April 29th, 2005) 

Quote,

Hemophilia expert Takeshi Abe, who was facing an appeals trial over his acquittal in a professional negligence case, died of heart failure Monday evening at a Tokyo hospital, his family said. He was 88.

The Tokyo High Court suspended the appeals trial in February 2004 after it determined the former Teikyo University vice president was mentally incompetent.

https://www.japantimes.co.jp/news/2005/04/29/national/abe-central-figure-in-hiv-tainted-blood-products-scandal-dies/

Around the country: Why Alpha Therapeutic prefers being owned by a Japanese company (Quality of Production and Improvement in the Workplace: Hearing Before the …

By United States. Congress. House. Committee on Ways and Means. Subcommittee on Trade)

Page 60,

Quote,

A former colonel in the Japanese Medical Corps, Green Cross Chairman, Ryoichi Naito “is a unique person, an international man”reports Drees who also calls Naito, “the best boss I ever had” (page 61)

Abbot is also mentioned

Kind Regards

Carol

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”

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Contaminated Blood: Haematologist’s own letter shows journalist Susan Douglas was right to be concerned over US plasma AIDS risk to UK haemophiliacs in May 1983

Page extracted from the Haemophilia HIV Litigation Statement Of Claim (settled out of court in 1991) and discovered by Grayson, early 2000s, which is written in chronological order
(Image Grayson files)

This week journalist Susan Douglas (previously of the Mail on Sunday) finally gets the opportunity to give evidence to the Infected Blood Inquiry and respond to an official complaint made against her back in 1983 by haematologist Dr Peter Jones who worked at the Haemophilia Centre in the Royal Victoria Infirmary, Newcastle and which could have ended her career. The name of Douglas was put forward by this author Carol Grayson and her campaign colleague, Colette Wintle, to the Inquiry as a key witness who should be heard.

The Inquiry chaired by Sir Brian Langstaff, was set up to investigate the infection of haemophiliacs with HIV and hepatitis C during the 1970s and 80s when much of the factor concentrate treatment was imported from the US and came from high-risk sources such as prisoners, prostitutes, skid-row donors and gay men. Plasma pools could be as high as 400,000 donors, treatment manufactured from this cesspit of infection was injected directly into the veins of haemophiliacs to treat an inherited clotting disorder.

Grayson first came across the historic complaint against Douglas over 2 decades ago whilst trawling through old evidence from the 1991 haemophilia HIV litigation files held at a solicitor’s office in Newcastle. In a nutshell, Jones complaint to the Press Council alleging that her report was “sensationalized” and could cause distress to haemophiliac patients. Douglas will no doubt elaborate on the details in her written statement to the Inquiry during questioning by Queen’s Council.

After her husband Peter, a haemophiliac, died in 2005 as a result of receiving US factor concentrates contaminated with HIV and hepatitus viruses, Grayson completed her Masters degree (Distinction) in Gender, Culture and Development at Sunderland University. During this period she wrote a dissertation critiquing the government’s so called “definitive” report on Contaminated Blood titled, Department of Health, Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991.

Ironically, the report had been commissioned by government and written in direct response to a dossier of documents supplied jointly by Grayson and the Newcastle Journal some years earlier as part of their “Bad Blood” campaign launched in 2000 with journalist Louella Houldcroft. Their evidence questioned blood policy decisions in relation to “self -sufficiency” in blood and blood products (or rather the lack of self -sufficiency) and highlighted missing/shredded documents from Lord David Owen’s period as a junior health minister in the 1970s. Grayson managed to obtain copies of papers that were missing or had been shredded by government officials (as highlighted at the Inquiry this week) and was able to demonstrate how damning evidence was missing from the Self Sufficiency report which can be read on the following link.

(Grayson arranged for these documents to be sent to the Deptment of Health, complete with legal letters of return and a 36 page inventory. Many years later in 2018 the report was finally withdrawn as a “whitewash” on the evidence of Grayson as detailed in her original dissertation written during 2005/6)

Turning back to the history of AIDS, concerns over the emergence of a new virus began to appear in the US during 1981 and 1982 as highlighted in the excerpt below from an interview with Dr Don Francis who worked at the Centre for Disease Control during the 1980s. Grayson met Francis during a conference in Washington DC where they both received awards alongside Jay Epstein for their service to haemophiliacs and upholding “truth and justice” in relation to HIV and hepatitis C infection and contaminated blood. Francis was one of the first experts in disease control to warn of the link between blood, AIDS and haemophiliacs.

Dr Don Francis interview question and answer session reflecting on his role at the CDC in the early 1980s and AIDS in haemophiliacs (PBS, Frontline) … “The first cases of AIDS in the hemophiliac population surfaced in the summer of 1982”

Quote,

… How did HIV get into the [clotting] factor?

The terrible outbreak of HIV in the hemophiliac community, which essentially eliminated an entire generation of hemophiliacs in several parts of the world, but certainly in the United States, was really a very simple situation. That is that clotting factor is obtained from blood or plasma that is donated blood or sold. In the old days, one had to take the liquid part of the blood plasma and extract the Factor VIII from it.

Now, to do that most efficiently and properly, you need a large amount so that it can treat thousands of people. So how do you do that? You take plasma from thousands of people and put it together and then extract the clotting factor, put it in a bottle, and it goes to the homes of hemophiliacs to be injected in them. Well, a better way to transmit an infectious agent than that would be difficult — that is, you take thousands of people, put them into a bottle, and then send that out and inject it into other people with a needle.

What happened was that people really at risk of HIV/AIDS — drug users who wanted to sell even though they were not allowed to sell their plasma, they got in prison populations and were selling their plasma; and the blood industry did not exclude gay men from blood donation — ended up contaminating essentially all [or] lots of Factor VIII material that was used to treat hemophiliacs and infected essentially all of the hemophiliac population with a 100 percent fatal virus that eliminated an entire generation of hemophiliacs. …

… When did it become [clear], certainly to you and your colleagues, that this had happened, and how did the blood banks react?

The first cases of AIDS in the hemophiliac population surfaced in the summer of 1982, and then in the subsequent months there were about five cases that came in transfusion recipients that were announced in January of 1983. This was a time when IV drug users were already transmitting the disease. It was well known that it was in blood on the end of needles shared by IV drug users; it would be logical, therefore, that it would be transmitted through therapeutic blood product used with hemophiliacs or blood transfusions. For us as epidemiologists, this was not a great leap, and we waited until we had a couple of cases, at least or three or four or five cases, before we held big meetings. But then we held big meetings and turned to those responsible for protecting the recipients of those materials to do something about it, and that was another public health disaster.

SEE INTERVIEW

https://www.pbs.org/wgbh/pages/frontline/aids/interviews/francis.html

Turning specifically to the UK media warnings on US plasma in relation to haemophiliacs, an article was published in the Observer in January 1983 written by Christine Doyle documenting similar warnings to Frances which formed part of the historic HIV litigation evidence never shown in court and which Grayson highlighted as follows,

Widow claims contaminated blood warnings were missed (Northern Echo, 14th March 2018)

14th March 2018

https://www.thenorthernecho.co.uk/news/16085290.widow-claims-contaminated-blood-warnings-were-missed/

UK haematologists held a meeting during the same week in January to discuss the article but failed to act on the warnings by calling for an urgent withdrawal of imported factor concentrate treatment.

Shortly after on February 3rd 1983, the following quote appeared in New Scientist,

“In the last year a task force under Dr Harold Jaffe at the Centre for Disease Control at Atlanta Georgia, has found seven cases of AIDS amongst haemophiliacs who do not fall into any other categories. Jaffe believes that the spread of the disease may be connected with new preparations of factor VII concentrate – the blood clotting agent  given to haemophiliacs -which are made up from large numbers of donors, rather than one individual”

Other warnings quickly followed and alarm bells should have been ringing regarding the safety of the UK haemophilia population but haematologists were still in denial, a question was put to Professor Peter Kernoff by the Haemophilia Society as follows,

Question

Could British haemophiliacs get AIDS?

Answer

Of course its possible. But I’d still expect AIDs to remain a rare disease. The idea that there’s an epidemic of  AIDS amongst haemophiliacs is Ludacris. (1983)

The article by Douglas was published in The Mail On Sunday on the 1st May 1983. The following excerpt from my dissertation written over the period 2005/ 2006 comments on her story and also evidence presented by Dr Spence Galbraith (Public Health Laboratory Service) during the same time period of May 2003.

An early report on the possible risk of haemophiliacs becoming infected with the
AIDS virus via factor VIII appeared in New Scientist (Sattaur, 3rd Feb 1983). The year
1983 was very significant for the haemophilia community in terms of how the news of
AIDS, (a new blood borne virus at that time) was handled by the Government, the
medical profession and the press. I have documented here an incident that appeared in the
Mail On Sunday which does not appear in the SSR yet is an important part of the history
of AIDS in the UK and one that the Government and the medical profession are keen to
forget I question why this important article was omitted when the DOH utilized a later
newspaper article on AIDS in the SSR from the Sun (18th May, 1983). On 1st May 1983
Susan Douglas, a journalist for the Mail On Sunday wrote a well-researched and
controversial article reporting on the dangers of importing “killer” blood from the US
due to the sourcing of plasma from “high-risk” donors and the risk of AIDS for UK
haemophiliacs. Douglas had identified the first two British haemophiliacs with AIDs
which led to a strong reaction from a leading haematologist and a dismissal of her
concerns from the Government. A complaint to the Press Council was filed by Dr Peter
Jones Consultant Haematologist at a Newcastle hospital who claimed the report was
“sensationalized.”


The Government reacted to the article by stating that the evidence presented by
Douglas was “too slight for immediate action.” The Press Counsel went on to censor the
Douglas report as “extravagant” and “alarmist” (Douglas, 1984). This had the effect of
temporarily closing down some news stories on AIDS but haemophiliacs had begun to
question the risks associated with their treatment and once again were met with the
repeated response “not to wority.” The national Haemophilia Society responded on 4th
May 1983 (see Appendix A 13) sending a letter telling members that “the importation of
licensed blood products has always been strictly monitored and controlled” and that “it
would be counter-productive to alter our treatment programmes radically.” Under the FOI
Act the name of the author of this letter has been blocked out. Galbraith (1983) based at
the Public Health Laboratory Service (PHLS) Communicable Diseases Surveillance
Centre was becoming increasingly concerned at his own findings. He wrote a letter on 9th
May to the DHSS in London (see appendix A 14) which documented the first known case
of AIDS in a UK haemophiliac in Cardiff who had been treated with US factor
concentrates. This letter is notably missing from the SSR, Galbraith expressed his concern
over AIDS and infoirmed the DHSS of 11 similar cases in the US. and 3 in Spain and
warned,


I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified. (Galbraith, 9th May 1983)

Galbraith attached his reasons for the withdrawal of treatment and urged an early meeting
with haematologists, virologists and others concerned. He also stated, “I am most
surprised that the USA manufacturers of the implicated blood products have not informed
their customers of this new hazard. I assume no official warning has been received in the
UK” (Galbraith, 9th May 1983.) Here it can be argued that once again commercial
interests were prioritized over safety. Galbraith failed to get a positive response to his
concerns. A meeting of Haemophilia Reference Centre Directors dismissed his worries
declaring that there were was insufficient evidence to withdraw US concentrates although
they agreed to review the situation (Bloom and Rizza letter, June 24th 1983, see Appendix
A 15). Galbraith identified that the first known case of AIDS in a U.S. haemophiliac was
in October 1980 although the first recorded case of AIDS in the general US population
was in 1978. He attempted to warn the medical profession that although at that time the
number of cases might be small that did not mean the risk of infection was small. The
national Haemophilia Society funded in part by the American plasma companies
responded to the issue of AIDS on the 18th May 1983, the SSR Chronology states that the
“Haemophilia Society appeal not to ban imported blood products and urge patients not to
stop treatment in response to concerns over potential risks” (SSR, 2006, p. 44).

In the US the plasma companies were slow to react although a meeting between the
Food And Drug Administration (FDA), the Centre For Disease Control (CDC), plasma
companies and other interested bodies met on a number of occasions to discuss the
problem of AIDS. A plasma company letter from Hink (1st June 1983) advised that gay
donors (considered a high-risk population for hepatitis viruses) should voluntarily
exclude themselves from donating plasma (see Appendix A16, Gay Donor Adverts). The
letter also stated “there are no data to support the emotional arguments that prison plasma
collected from adequately screened prisoners is ‘bad”‘ (Hink letter, 1983, see Appendix
A 17). Although the FDA went on to tighten up controls on plasma donors both the U.S.
and the UK continued to use up old stock on haemophilia patients manufactured from
donors known to be high-risk for HIV and hepatitis C and failed to withdraw this
treatment (Glenarthur letter, undated, see Appendix A 18).

On November 25th 1984 Douglas hit back at the UK Government and medical
profession by writing a second article for the Mail On Sunday entitled “AIDs: This
Scandalous Cover-Up.” She noted that there were now 90 cases of AIDS identified in
Britain and 38 people had died from AIDS including one of Dr Jones’s own patients,
Newcastle haemophiliac, Terence McStay. In the same month the American Correctional
Association (1984) produced an information bulletin entitled “Plasmapheresis Centers In
Correctional Institutions” which noted the strong link between intravenous drug-users in
prisons and infection with hepatitis viruses and the AIDS virus. The following statement
appears in the document,


Using “prison” blood is controversial within the plasma industry itself It is also
controversial at the consumer level, especially among the hemophilia population. Medical, ethical, and moral concerns have been voiced publicly; they must be considered in any decision-making process. (American Correctional Association,1984)

End of Excerpt

(In 2009, Grayson was awarded the Economic and Social Research Council, (ESRC) Michael Young Prize for her dissertation challenging the government Self Sufficiency report 2006 and its version of historical events.)

Douglas was right in her concerns yet treated appallingly. She was attacked unfairly by a misogynist who thought he knew better than a journalist. Grayson has for years highlighted this grave injustice calling for the complaint to be overturned and a public apology given to Douglas. Galbraith also deserves an apology from government. He helped Grayson supplying his old papers and permission for them to be used on BBC Newsnight documentary in April 2007 to coincide with the launch of the Archer Inquiry. Grayson already had copies but the original still retained his unredacted handwriting at the top of the page. Galbraith related to this author how he never forgot or forgave how he was ignored and his sense of deep pain and anger that his warnings to withdraw US treatment from the shelves in May 1983 were ignored. Just before his death he approached me wanting help to litigate against a named government official but sadly by this time he was in poor health and it wasn’t to be. One of his final acts was to send Grayson a book dedicated to her that he had written on John Snow and the Broadstreet Pump, the discovery of typhoid in the water supply urging her to continue her investigations into Contaminated Blood. He also invited her to visit him and his family. Sadly he died before the visit could take place but Galbraith will not be forgotten.

The Haemophilia Society today is a far cry from its predecessors and has since published a written apology formulated with the help of Grayson and Wintle for its past catastrophic failings. The organisation today is working hard to support victims at every step and ensure an accurate and honest account and timeline of Contaminated Blood history is recorded so lessons can be learnt.

Grayson discovered other examples of Jones attacking the media over Contaminated Blood within the HIV litigation which she has submitted to the Inquiry. She also learnt that Jones allegedly had a hand in ensuring her voice was not included in a BBC Reunion radio programme (11th Sept, 2016) on which he appeared but she was cancelled at short notice. Colette Wintle who did appear on the programme was subjected to editing out of parts that attracted his disaproval.

In a final twist to the story, Grayson came across reference to a letter authored by Jones and others whilst she was reviewing thousands of documents to be submitted to the Infected Blood Inquiry. It appeared in the Statement of Claim, part of the HIV litigation in 1991, evidence presented by the lawyers for haemophilia claimants. The letter was published in the Lancet and dated 15th January 1983 and contained the following passage,

Peter Jones et al reported that 11 out of 16 patients all of whom had been exposed to United States Commercial Concentrates, had altered T cell subsets, similar to AIDS and that a New York study was similar.

So in essence Jones was worried enough about haemophiliacs and AIDS to go on record with his findings to the Lancet in January 1983 yet fought to close down Douglas for being “sensationalist” in May of that same year. This was the height of hypocrisy when just 4 months later the evidence had significantly strengthened linking imported factor concentrate plasma treatment with the first cases of AIDS found by Douglas in UK haemophiliacs.

On the 6th May 1983, the Communicable Disease Surveillance Centre (CDSC) reported the following under the title AIDS : American Factor VIII

The male patient (age 23 years in Cardiff) who is a known haemophiliac now appears to have the right signs and symptoms for a diagnosis with AIDS. (He has an opportunistic infection – oesophageal candidiasis – and also – epididymoarchitis of unknown aetiology.) He has been ill for a month and has been treated with American F VIII. We have no further news of the haemophilia patient in London (as mentioned in the press (on Sunday 1st May 1983).

Douglas should be belatedly applauded for her stirling work and investigative journalism. Also to be thanked is her main anonymous source for the article whom she refers to as “haematologist zero Cardiff” who cared enough to gave an honest account of the danger to haemophiliacs whilst Jones descended into anger and denial lashing out at the unfortunate messenger!

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”

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Contaminated Blood: Professor Makris argues for compensation for haemophiliac “natural clearers” of hepatitis C on Twitter.

Professor Mike Makris makes 5 key points on Twitter supporting compensation for haemophiliac “natural clearers”
(Image via Twitter)

This week has been one of mixed emotions for haemophiliacs given contaminated blood and their affected partners that have fought long and hard over decades for both a public inquiry and proper compensation for all.

Haemophiliacs were born with an inherited bleeding disorder. They became infected with hepatitis C and HIV (in addition to hepatitis B) during the 1970s and 80s through factor concentrate treatment given to help their blood clot. It was often imported from the US and sourced from “high -risk donors” such as prisoners, sex workers and drug addicts.

The Infected Blood Inquiry (tragically, years too late for many) was set up by government in 2018 to investigate and examine the circumstances surrounding infection and is chaired by Sir Brian Langstaff.

On the issue of compensation, after inviting submissions from interested parties, and reading the report of Sir Robert Francis (brought in by government to write up a Compensation Framework Study), Langstaff accepted the recommendation of Francis regarding the need for interim payments to be considered now to alleviate suffering and further suffering. Langstaff then took the key step of recommending that an interim compensation payment of no less than £100,000 should be paid to all the infected people and all the bereaved partners currently registered on the (government) financial schemes and those who register now and before the inception of any future schemes. Watch Sir Brian speak about this on the link below,

The government have now accepted this initial recommendation of Sir Brian Langstaff in full, releasing a press statement on the 17th August 2022 as follows,

Infected Blood victims to receive £100,000 interim compensation payment

https://www.gov.uk/government/news/infected-blood-victims-to-receive-100000-interim-compensation-payment

(The interim compensation payments will also be made to persons infected via whole blood transfusion though this is an entirely separate case to haemophiliacs.)

For those in the haemophilia community who will receive this interim compensation payment by the end of October, the infected, and affected bereaved partners, there is a sense of relief and gratitude to “Sir Brian” coupled with deep sadness as those left alive struggle with ongoing ill health and partners continue to mourn their loved ones.

In addition, there are those who have yet to receive any interim payment including parents who lost children and children who lost parents who have expressed their pain and disappointment through the media. The Chair has highlighted that work is very much ongoing and urged patience, stating, “this is not the end of the Inquiry’s work and the question of compensation and its scope is not resolved in this short report on interim payments, I repeat, the interim report concerns only whether I should recommend interim payments.” Langstaff’s final report is expected to be published in 2023 with full and final recommendations.

One ray of hope has emerged on social media however for those haemophiliacs where it may be more difficult to seek a claim for compensation as they have naturally cleared the hepatitis C virus and are known as “natural clearers”. Professor Michael Makris, a professor of haemostasis and thrombosis at the University of Sheffield, took to Twitter to highlight his 5 important points for supporting the inclusion of these natural clearers for compensation payments as follows:-

I hope the Infected Blood Inquiry ( @bloodinquiry) will not forget the 15% of persons with #haemophilia that were infected with hepatitis C and who cleared the virus spontaneously. #hemophilia 1/5

Persons infected with hepatitis at a young age were more likely to clear the virus spontaneously. To qualify for compensation you need to show chonic infection ie for more than 6 months. This can only be done by submitting an application with abnormal liver function tests. 2/5

Abnormal liver function tests (ALT or AST) are blood tests. Doctors did not do many of these pre-1991 and even in cases where they are done, the medical notes have been destroyed or are missing. 3/5

Many persons with #haemophilia who cleared the virus spontaneously and who can not get compensation (according to the current system) have suffered significantly psychologically as a result of knowing they have been infected with hepatitis. 4/5

The @bloodinquiry also needs to address the issue of this sizeable group of individuals. These patients may not have high visibility at the IBI, but the impact of hepatitis on their lives is very real. 5/5

END

In addition to the points made by Prof Makris, haemophiliacs that are natural clearers may have been infected with multiple hepatitis viruses such as B, D, G and some could have been re-infected with hepatitis viruses and infected with HIV. Early drug treatment regimes for HIV may have also added additional stress to the liver. Even where haemophiliacs have cleared hepatitis C there may still be residual damage and weakness of this organ due to these multiple factors which affect haemophiliacs.

As a former nursing sister in psychiatry that nursed many patients with hepatitis viruses and HIV/AIDS, Grayson states that the long term psychological damage of having being infected and the distressing way haemophiliacs learnt of their infection(s) cannot be underestimated. Haemophilia runs in families so there is also the worry of watching other infected siblings struggle with hepatitis C which may make it more difficult to accept that a natural clearer has actually cleared the virus, the fears may remain long after the virus has gone. It is one thing to be told this, another to actually believe it.

Sir Brian Langstaff has demonstrated that he is a person who genuinely listens to all concerned and shows carefully measured thought and much needed empathy so there is optimism that he will consider further additional points made to him. When the Inquiry does conclude and if there are to be individual assessments of those infected and affected then these points made by Professor Makris should be examined as they make a compelling arguement for including natural clearers in future compensation schemes and then determine at what level they should be compensated.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”

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Contaminated Blood: Letter from the sister of hepatitis C infected US prison plasma donor that Tony Blair ignored

Linda Miller saying goodbye to her brother Bud Tant, a US prison plasma donor, as he lay dying from liver failure as a result of his infection with hepatitis C
(Image shared by Miller)

Haemophiliacs were infected with HIV and hepatitis viruses during the 1970s and 80s through their factor concentrate treatment for an inherited bleeding disorder. They discovered years later that much of this treatment was imported from the US and made from the plasma of “high-risk” donors such as prisoners, sex workers and men who had sex (often unprotected) with men. Two of the biggest myths regarding what is now known as the Contaminated Blood scandal are 1) That haemophilia campaigners presented no evidence of safety violations and human rights abuses and 2) That most of the key evidence was only just “discovered” in 2017 by new campaigners… both being false statements.

Regarding the first point, damning documents were repeatedly sent by infected haemophiliacs and affected partners to government and indeed presented in face to face meetings with ministers. Government had a tendency not to minute these meetings so campaigners quickly learnt to write their own minutes sending copies to those they met recording their interactions. On the second point, information regarding who knew what and when is frequently misrepresented in the media today by unscrupulous journalists that either don’t do their checks properly when interviewing subjects and believe all that they say unchecked or are working to their own personal agenda and bias.

In the 1990s/early 2000s this author Carol Grayson and her late husband Peter Longstaff were in regular contact with American activist, Linda Tant Miller, the sister of an Arkansas State Penitentiary plasma donor, Bud Tant, who died from hepatitis C. Miller ran a damning website detailing prison “blood cows” looking at the alleged safety violations in collecting plasma and abuse of incarcerated donors. The couple were also the first UK campaigners to have contact with documentary maker Kelly Duda who was making a film on the plasma programme which came to be known as Factor 8: The Arkansas Prison Blood Scandal.

The following piece on Bud Tant and Arkansas prison was published as part of a wider story by the awarded Newcastle Journal “Bad Blood” campaign set up in 2000 jointly by journalist Louella Houldcroft and Grayson and Longstaff, their goal being to achieve a public inquiry and proper compensation for those infected and affected. They set about introducing Houldcroft to Miller by phone and email and a story went out on August 7th, 2000, having first been checked over by the paper’s lawyers as it was a controversial topic and accuracy was important. This is the scanned article as the old Journal website was changed and the online links disappeared. Grayson maintained hard copies and due to interest generated as a result of the Infected Blood Inquiry, the articles may soon be resurrected and once again made easy to view. The Chronicle, a sister paper in Newcastle also ran numerous article with the couple.

Newcastle Journal “Bad Blood” campaign article (August 7th, 2000) written by Louella Houldcroft in collaboration with Grayson, Longstaff and Miller
Part of the same article on Bud Tant and Arkansas Prison

On 24th November 2000, Grayson received an email from Miller prompted by a newspaper article which reported that Irish contaminated blood victims might “sue” for their infections and go to court. She wrote,

This article made me think of something — didn’t you say that you have evidence, (a package or something like that) which confirms that Pete received Cummins Unit plasma product?  Well, I PROMISE YOU I can get together enough testimony that you would be successful in suing those INDIVIDUALS of the Arkansas Department of Correction who were responsible for the way the plasma program was run.  I can even provide you a former Compliance Officer of the ADC who told me and a friend of mine who’s making a documentary about the atrocity that a civilian employee of the plasma center came to her office and told them about the re-use of needles and tubing and the falsification of test results.  I can also put an attorney in contact with a respiratory therapist who works at the biggest hospital in Pine Bluff who worked at the plasma center as a college student – you would have to subpoenea him because he’s really scared due to the fact that he’s had death threats if he talks – but he knows a lot about it.  That’s in addition to all the former donors and plasma center workers who are still in the prison who are willing and even anxious to testify about what went on there.  One of those inmates’ job was to re-sharpen used needles with sandpaper and the other was the one who would fix the plasma center freezers after they had been broken for days at a time.  Someone else I know has  a document signed by one of them which PROVES CRIMINAL ACTS I can’t tell you about right now, but this document alone would enable you to prevail.

At that time, Grayson and her campaign colleague, Colette Wintle were in regular contact with Lord Alf Morris, then President of the UK Haemophilia Society who would ring them for briefings on the latest campaign and news updates so that he could discuss and refer to them during parliamentary debates. Morris was deeply disturbed by what he was learning about US prison plasma and was doing all he could to secure both a public inquiry and proper compensation for those infected and affected that had received these products.

On the 22nd March 2001 she again emailed writing,

My very dear friends:

I am so excited about what you are accomplishing!  YES, I will write a letter to Mr. Blair and tell him exactly how they harvested that blood and how it was handled.  I will start working on it tonight and get it to you as soon as I can.  I don’t see HOW they can fail to be shocked and appalled at INTENTIONAL MURDER committed by a US state agency!  I mean, it’s not like there was even a CHANCE the plasma wouldn’t sicken and kill people, and the people who harvested it were medical people.  They knew exactly what they were doing.

We in America have faced an added blockade of the atrocity due to the fact of Clinton being President, but now that he’s out of office we are barrelling full speed ahead.  Kelly Duda’s film is almost complete.  He thought he had it done, but then decided it was a little too long, so he’s doing some last minute editing to shorten it for most markets.  He has requests for it from HBO and several networks.  48 Hours, which is a popular  American news program has also expressed an interest in doing the story and Kelly is working with them, too.  As soon as the program airs I plan to begin a push to get folks to contact the FBI and Justice Department and demand investigation into this atrocity and prosecution of the guilty parties.  I sure wish some group from another country could come here and sue the Arkansas, Texas and Federal governments for this, but the problem is finding a law firm with “deep enough pockets” to carry the suit.  The Canadians are still seeking a US firm which is willing to take on this case.  I believe that when the public pressure grows intense enough law firms will be vying with one another to prosecute this case, but until we can get the message out to the public we’re not getting any action.

The thing is that the US press has a blackout on this story.  We think that the fact that virtually the entire world will be able to sue the US is the major factor in this.  So we’re fighting an uphill battle.  Most of what we are able to inform folks about takes place online.  We’re not going to give up, though.  We’ll NEVER give up!!  We know we WILL prevail  because we KNOW God is on the side of righteousness!!

I pray you’re successful in getting them to provide recombinant treatment to all hemophiliacs!  It’s absolutely INSANE that they haven’t made the switch as soon as it became available.  Based on what I’ve seen through this work, I would BET that the whole reason they haven’t is based on protecting the blood brokers from financial loss!  It’s a tragedy of monumental proportions that people are more concerned with financial gain than with the lives of others.

Well, let me get off here and go get some things done and then start the letter to Mr. Blair.  Thanks so much for letting me know about this.  I’ll get the letter to you asap.

God bless and keep you both!

Hugs.

Linda


“To be silent in the face of injustice is to be an accomplice to evil.
I will not be silent.”
 Lori Berenson – January, 2000

Miller then took a break from campaigning due to health issues and a stay in hospital. A flow of further emails followed and then the promised letter to Tony Blair arrived on 25th March 2001. Miller stated,

Hello, dear people I am attaching a scanned, signed copy of the letter to Mr. Blair in which I made the type face larger and added a line requesting a reply, in case you want to print it and use it for distribution and delivery to Mr. Blair. 

After giving an update on her health, she wrote,

I believe that once the story gets told to Americans they will be as outraged as we are.  It’s just a matter of REACHING THEM and thus far we have been unable to get any  mainstream news source to mention it at all.  My father and I began trying back in 1997.  We wrote to EVERY major news source and investigative reporter we could find and never even received the courtesy of a reply to our letters from anyone.  We were just astounded.  Things got a little better after I built the web site – Kelly, the documentary film maker and the producer from 48 Hours found me via the site, but even after all this time we’re still at the point of getting ready to get the story out.  I find it so hard to believe.  I really believed what they taught me in school – that we have a free and autonomous press that tells the American people the truth, no matter how grim.  What a sad truth I’ve had to face in that it’s not true. 

Kelly tells me that the reason the US media don’t want to report it is because when it’s globally known – when just ONE country wins a civil lawsuit against us or the perpetrators are brought to justice – virtually the entire world will be able to sue Arkansas and also the United States due to the culpability of the Food and Drug Administration which kept re-certifying the Cummins Plasma Center despite the horrendous conditions.  This would DEFINITELY bankrupt Arkansas (one of the poorest of the states), and would do grave financial damage to the US economy.  Well, I don’t care.  I’m so outraged that even though the financial devastation of the federal government would adversely impact my own life I really don’t care.  This is THE worst atrocity in the history of humanity, and  because I know about it I am compelled to do all I can to set it right.  I believe that had I lived in Europe during the days of WWII I would have hidden and assisted people destined for the extermination camps, and I see this as being on the same moral level.  I’m willing to do and suffer whatever it takes to see to it that the monsters who have unleashed suffering and death on innocent people don’t get away with it! 

The problem my country has with me right now is that I BELIEVED all the propaganda I was fed about how moral, upright, just and trustworthy my country was and how we as individual Americans should embody the high principles of America.  So I always did my best to live up to the standards I believed were expected of Americans.  Having had the heartbreaking experience of learning that my country is not what I thought it was hasn’t changed who I AM, and the American I am and thought most of us were just never sits idly by and witnesses injustice without doing my best to right it.

After some general comments on her family, she continued,

I am SO IMPRESSED with what you two have managed to accomplish!  Having struggled so long and fruitlessly to get my own country’s media to report this atrocity I am so thrilled that you are having such success in making it known in England.  You are awesome!  I have no doubt at all that you will achieve ALL your goals in record time and that in the process your country and Canada will force America to address the crimes which were committed and do the right thing.  Sadly, I believe that international pressure is what it’s going to take.

Well, I have more work to do so I had best get to it.  God bless and keep you both

Linda

The following letter from Miller was handed in to no 10 by Lord Alf Morris, Grayson and Wintle on one of their demonstration days at Westminster. It is the unsigned version as the signed one was in an old format not compatible with this site.

March 22, 2001

Mr. Tony Blair, British Prime Minister

10 Downing Street

London, England

Dear Mr. Blair:

My name is Linda Tant Miller and I live in the state of Washington in the United States.  The purpose of this letter is to provide you some of the information to which I am privy regarding the collection of HIV and hepatitis-tainted human blood plasma from the Cummins Unit of the Arkansas Department of Correction, (ADC) and its distribution throughout the world. 

My brother, Bud Tant was a prisoner in the Cummins Unit from 1984 until his death from hepatitis C on March 14, 1999.  Neither my brother nor his family was aware of the fact that he had this virus until approximately 1996, but according to John Byus, the current Medical Administrator of the ADC, Bud had the virus at the time he was first incarcerated there.  During part of the time that my brother was donating plasma, Mr. Byus, a Registered Nurse worked in the Cummins Unit Infirmary, so he is in a position to know this fact.  Bud was, nonetheless permitted to donate plasma at every collection session from 1984 until the program was terminated in 1992.

I first learned of the sickness in Canada as a result of the Cummins Unit plasma just prior to my brother’s death, but I didn’t have time to address the subject in depth until after he died.  As I watched my brother die a death more gruesome and agonizing than I’d ever dreamed in my worst nightmares, I realized that millions of people all over the world would suffer his same horrendous fate and their families would stand helplessly by, suffering the same grief and agony we were enduring.  I realized that most of them would never know the source of their infection, but I knew, and I vowed to my brother that I would see the atrocity exposed and those responsible for it brought to justice.  I have devoted my life to this cause since that date.

Several years ago Sgt. McAlpine of the RCMP, indicated to me that they had little hope of bringing to justice the ADC administrators responsible for the knowing and deliberate harvesting and sale of tainted plasma, because by the time they got to Arkansas the paper trail was gone, so I promised him that I would find eye-witnesses and participants who would be willing to testify to what happened.  I have since that time located many current and former inmates, former Cummins Unit Plasma Program staff members and a former ADC Compliance Officer who are anxious to testify to the facts of this crime.

Here are just a few of the facts I have uncovered:

  • Known homosexual prison prostitutes, even those in the final stages of AIDS were routinely permitted to donate plasma.
  • Men who were bloated and jaundiced from the final stage of hepatitis were routinely permitted to donate plasma.
  • Even when available, tests for HIV and hepatitis were seldom utilized, and when they were, results were often falsified.
  • Needles re-sharpened with sand paper and collection tubing were re-used from inmate to inmate, thereby cross-infecting virtually the entire donor base.
  • The collected plasma was stored in a freezer that was often out of order.  Plasma rendered unfit by thawing was re-frozen and shipped out in regular shipments.
  • Plasma that was rejected by the plasma brokers as unfit was returned to the Cummins Unit for destruction.  Out of each returned case of plasma, one or two units were destroyed and the rest was re-frozen and re-shipped.
  • During periods of time when the US Food and Drug Administration had shut down the Cummins Unit program due to their unsafe practices, the ADC administrators continued to collect and sell plasma, using names collected from the local telephone book and selling it through a community plasma center.

All of these charges and more can and will someday be proven in a court of law. 

As I’m sure you are aware, many thousands of innocent British citizens have been sickened and killed due to the deliberate crimes committed by the MEDICAL PERSONNEL who administered the Cummins Unit Plasma Center.  I hope therefore that you will join your voice to those of us who are working to see justice served in this matter.  I urgently implore you to use the power of your office to spur the FBI and the US Department of Justice to implement a full-scale investigation of the people and institution that made the tainted plasma available to the pharmaceutical companies.  Had it not been for the greed and corruption of the plasma collectors the people and governments of the world would not now be facing the tragedies and financial burdens with which we’re now forced to struggle

I know all too well the effect my brother’s suffering and death has had on my family.  We will never be the same.  I no longer work at a paying job because seeing justice done in this matter is far more important to me than my own personal comfort and finances.  My parents have developed health problems due to the stress and grief of our tragedy that will soon see both of them in their graves.  My sister and I have debilitating flashbacks to the time of our brother’s dying which haunt us day and night, turning our lives into nonstop nightmares of pain and grief.  Multiply our suffering by BILLIONS, since the secondary infections from the Cummins Plasma Program will continue to the end of time unless science discovers cures or vaccines against the plague the Arkansas Department of Corrections and its employees have unleashed upon the world.  Sir, the people who are guilty of this atrocity are the worse criminals in history and I hope you will be as incensed and determined to see justice done as I am.

I also pray you will heed the pleas of my good and wise friend Carol Grayson and take the steps necessary to see to it that no other British subjects will be infected with deadly diseases during medical treatment and to assure that fair and equitable compensation is made to ALL the victims of this atrocity.

For more information on the Cummins Unit Plasma Program please visit my web site at http://www.geocities.com/bloodcows.  In addition, a friend of mine is producing a documentary film about the Cummins Unit Plasma Program that contains yet more testimony and information.  It will air in a few months and I will notify you of the date and time as soon as they are known.

I will appreciate a response to this letter, apprising me of your thoughts and intentions regarding this atrocity and the plight of the victims.

Thank you for your time and attention to this urgent matter of justice.

                                                                                    Sincerely,

                                                                                    LINDA TANT MILLER

                                                                                    (Address supplied)

The only reply ever received from Blair’s office was an acknowledgement of receipt but no comment on the content of the letter and although Arkansas State Penitentiary has a prison history section on their website, information on the history of what was a long standing plasma programme can no longer be found.

Not long after, Grayson and Longstaff went on to initiate contact with a US law firm recommended by American and Canadian campaigners. Longstaff was then confirmed to have received factor concentrate batches which included infected prison donors from Arkansas by his San Francisco lawyers. Both Longstaff and Wintle were accepted as legitimate cases by four US plasma companies where an agreement was eventually reached though protected largely by a silence clause with regard to the details. Kelly Duda completed his well received documentary and later testified at the Archer Public Inquiry (A privately funded Inquiry set up by Lord Archer of Sandwell in 2007) at the request of Grayson and Archer, funded by the Haemophilia Society after much persuasion by Grayson and due to insufficient funding, stayed with Wintle at her then home in Tunbridge Wells.

LINKS

Law suit for infected blood (Guardian, June 4th, 2003)

https://www.theguardian.com/world/2003/jun/04/aids

Arkansas Times, “Bloody Awful” How money and politics contaminated Arkansas’s prison plasma.”

https://www.arktimes.com/arkansas/bloody-awful/Content?oid=863387

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”.

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Contaminated Blood: Haemophiliacs were kept waiting years for todays interim compensation announcement following government lies over Eire settlement

Haemophilia campaigners in Downing Street, they have spent decades fighting for justice, only to be continually blocked on compensation
(Image via Colette Wintle)

Haemophiliacs infected with HIV and hepatitis viruses through contaminated blood during the 1970s and 80s believed their long wait for compensation was finally about to end in 2009. The Archer Inquiry was set up in 2007 by Lord Archer of Sandwell following intense campaigning by his friend and colleague, Lord Morris of Manchester, the world’s first ever Minister for Disability. The Inquiry was established to address the events surrounding the infection of 4,670 haemophiliacs according to the Haemophilia Society figures but had no remit for “legal liability” which meant some key evidence alleging liability could not be used and was returned to long standing campaigners including this author Carol Grayson. This did not however mean there was no liability.

Many haemophiliacs had already died leaving behind bereaved partners who continued their fight for justice despite their own loss and pain. Some spouses were also infected and children of haemophiliacs as highlighted in a Newcastle case which featured in old media stories.

At the time of Archer, it was extremely rare to see the (adult) child of a haemophiliac campaigning though a handful did come to support at the Inquiry which was gratefully acknowledged. As Lord Morris stated in Hansard on 30th March, 2000, the Contaminated Blood scandal was, “what my noble friend Lord Winston, among other distinguished members of the medical profession, sees as the worst treatment disaster in the history of the National Health Service. My noble friend is a Vice-President of the Haemophilia Society.” The Archer Inquiry was haemophilia specific referring to a unique patient group of persons with inherited bleeding disorders infected through factor concentrate treatment and did not include whole blood victims, an entirely separate case infected via whole blood transfusions.

One of the main recommendations from Lord Archer’s final report was “compensation on a parity with Eire”. Lord Archer echoed the campaign aim of Grayson which she initiated in 1996 and who gave evidence to that Inquiry twice and whom he credited in the body of his report. Government, determined not to pay out proper compensation, fed the lie beginning in the early 2000s that Eire had paid out on “liability” which was totally false. This was the only reason given.

Grayson and her campaign colleague Colette Wintle (who also testified at Archer) had already established in letters from Irish solicitors, Malcolmson Law, the Irish haemophilia Society and the Eire government way back in 2004 that the Eire compensation scheme was a “no liability” out of court settlement paid out at court levels on the grounds of “extraordinary suffering” so haemophiliacs would not have to endure years of additional stress taking legal action. Grayson wrote to many MPs of all parties on the 23rd February 2004 to inform them of her concerns re government lies as follows in a cut and paste image of the letter (minus her personal address),

Years later in 2009, haemophiliac Andrew March who was at that time hosting Grayson’s dissertation on his website, Slowly, Slowly, Catchy Monkey, discussed the possibility of taking a Judicial Review in the High Court, (something that Grayson had also been considering) to challenge the lies and government’s “line to take” to oppose compensation on a parity with Eire. They decided that this would be best in the name of a haemophiliac as opposed to a widow so Grayson offered to support a case if March proceeded. She was also willing to allow the original letters to be used as was Colette. March then suggested his lawyers work with Grayson. The following letter by email to the lawyers (cut and pasted, which she requested permission to show to relevant persons at the time) was submitted to the Infected Blood Inquiry set up in 2018 under Chair Sir Brian Langstaff and can be viewed here as follows:-

Grayson who sent dozens of emails of key evidence to March and his legal team and gave her time for free had only one request and that was that she accompany March when he visited his QC so she could present and explain her own research on Eire. This was agreed but never happened, March presented the evidence without her. Grayson’s awarded dissertation disappeared overnight from March’s website and she was seemingly referred to in court as “An Other” despite being public in her campaigning.

Such is the misogyny still existing in the haemophilia community that some will neither recognize that female haemophiliacs exist nor give credit to a female campaigner/ researcher, sadly a theme very familiar to Grayson and Wintle. This is also evident in Tainted Blood’s Timeline where March credits himself but TB as a group refuse to credit the person who discovered and put many of these documents together as a “collection” as part of her dissertation. The original credit for her and her late husband was removed when the old website went down and despite requests to return it has not yet reappeared.

This ongoing misogyny within the haemophilia community is a reflection of that within wider society. With regard to the Contaminated Blood campaign, instead of supporting Grayson and Wintle, the constant blocking by some so called “blood brothers” to massage their own egos, has had the effect of slowing down progress for truth and justice possibly by years whilst fellow haemophiliacs, such as Grayson’s husband Peter, an ardent feminist who supported his wife and many others died.

Interestingly however as has recently been highlighted by the Infected Blood Inquiry, it has been Grayson and Wintle whose names have repeatedly appeared over the years and been cited within internal government documents discussing the impact of campaigners going back decades and how to handle them. It wasn’t the men making the waves so much as the women and the women have the extensive back catalogue to prove it, long before most other groups even existed.

To Grayson who studied Gender, Culture and Development for her Masters Degree (Distinction) the treatment of females in the haemophilia community and misogyny they have faced in addition to the impact of the contaminated blood scandal is similar to how female activists were treated in the Black Power movement in America during the 1960s and 70s. Just substitute the word, black with haemophiliac. As Grayson wrote in one of essays, Elaine Brown speaks of gender inequality in the following quote,

“A woman in the Black Power Movement was considered at best irrelevant. A

 woman asserting herself was a pariah. A woman attempting the role of leadership

 was, to my proud black brothers, making an alliance with the ‘counter –

 revolutionary, man-hating, lesbian, feminist white bitches. It was a violation of

  some Black Power that was left undefined. If a black woman assumed a role of

  leadership, she was said to be eroding black manhood, to be hindering the

  progress of the black race. She was an enemy of black people” (Brown, 1992,

      p.357)

Those men who did support Grayson and Wintle were respected and valued, one being Steve Wintle often seen at demonstrations to campaign with his wife, the late Peter Mossman, co founder of the Manor House Group and others including from the original Birchgrove Group who gave encouragement by phone and email and turned up in person to hear Grayson and Wintle when they gave evidence at the Inquiry.

To return to the JR, not surprisingly it was won with March praised for “his” research while Grayson was left sat at home watching his interviews on TV outside the High Court whilst she mourned the fifth anniversary of the death of her husband. A Guardian article on the ruling can be read here,

Court ruling may help contaminated blood victims win higher payouts

https://www.theguardian.com/society/2010/apr/16/court-compensation-nhs-contaminated-blood

It might have been expected that the government now having been judged that their original decision regarding compensation on a parity with Eire was “infected with error” would immediately apologise for their lies and introduce an Irish type compensation scheme… but not a bit of it. The government then moved the goalposts introducing another reason stating they didn’t have to follow Eire. The lies in fact continued.

So what is the situation regarding compensation in 2022. Sir Robert Francis QC released his report in June and the main report and key recommendations can be viewed on the Haemophilia Society article written by Jessica Bomford, see below,

Independent compensation study published

In addition, Sir Brian Langstaff, Chair of the current Infected Blood Inquiry has published his interim recommendation, after inviting submissions from lawyers representing their clients and from those infected and affected. As ITV highlighted, he stated,

“I recommend that: (1) An interim payment should be paid, without delay, to all those infected and all bereaved partners currently registered on UK infected blood support schemes, and those who register between now and the inception of any future scheme; (2) The amount should be no less than £100,000, as recommended by Sir Robert Francis QC.”

Children and parents were not included in this initial interim recommendation but Sir Brian stressed that this was just the beginning and work continues. Many haemophiliacs have died since the Inquiry began, those remaining are in poor health and bereaved partners also now have health issues after decades of caring for their loved ones unsupported. It has taken so long to campaign, they are now in the older age groups.

Hopes were temporarily raised that government would finally deliver when journalist Caroline Wheeler indicated that those infected and affected would hear from government last week regarding compensation…. only to be dashed yet again when nothing materialised by 5pm last Friday.

The Haemophilia Society Inquiry team, tweeted, on the 15th August,

Good afternoon. We’ve just been informed by the Cabinet Office that there will be no announcement on interim compensation payments today. Apparently we’ll hear something ‘this week’, but have nothing more helpful to pass on to you at this stage. This cruel wait continues.

Clare Souter responded poignantly by saying,

My lovely dad, Michael Souter, passed away on Thursday. His death certificate states Hepatitis C from contaminated blood products as cause. In regards to compensation, he always said he’ll believe it when he sees it… he never will now

😥

For some haemophilia campaigners this is their third Inquiry, Archer, Penrose (Scotland) and now the Infected Blood Inquiry. The evidence presented (where it was made possible to present it and was not blocked as with Penrose) has been damning and screams out alleged negligence and wrongdoing. Ben Harrison of Milner’s solicitors representing both Grayson and Wintle who are core participants in the Infected Blood Inquiry, and have already given evidence, wrote a recent article stating,

The government’s lethargy in responding to the interim recommendations of the Grenfell Tower Inquiry illustrates the point perfectly and gives cause for caution amongst those representing the victims of the contaminated blood scandal.

The sad fact is that many of those victims do not have time on their side and those representing them must be prepared to take whatever legal action is necessary to achieve justice for them before it is too late.

Put more simply, if the government fails to act on the recommendations of Sir Brian, then legal proceedings will inevitably ensue.

See following for full article,

Why Government’s response to blood inquiry will be a litmus test for other inquiries – Ben Harrison (Yorkshire Post, 9th August, 2022)

https://www.yorkshirepost.co.uk/news/opinion/columnists/why-governments-response-to-blood-inquiry-will-be-a-litmus-test-for-other-inquiries-ben-harrison-3796895

UPDATE… BREAKING NEWS… Even as the author is writing, just after midnight on the 17th August 2022, the government has finally released a statement granting infected haemophiliacs and affected bereaved partners interim payments, see below,

Press release

Infected Blood victims to receive £100,000 interim compensation payment

Thousands of victims of the infected blood scandal will each receive an interim compensation payment of £100,000

https://www.gov.uk/government/news/infected-blood-victims-to-receive-100000-interim-compensation-payment

The interim recommendations of Sir Brian Langstaff have now been granted in full.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.

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Contaminated Blood: Don’t “woke” us too far, haemophiliac women and girls bleed too and in different ways say Grayson and Wintle

Colette Wintle who has spent her entire life managing haemophilia and the misogyny that surrounds it
(Original image, via Colette Wintle)

For decades women whose blood had a clotting deficiency were told even by some care providers that they could not be haemophiliacs. WRONG!

Although most haemophiliacs with the inherited bleeding disorder are men, there are female haemophiliacs too, though only officially recognized more recently.

In November 2018, Mike Makris, Professor of Haemostasis and Thrombosis in Sheffield, UK tweeted,

There are 920 female patients with #haemophilia in the UK (652 A and 268 B). The new ISTH SSC definition recommends that female carriers with FVIII/IX levels of less than 40% should be considered as having #hemophilia

One of which is this author’s campaign colleague of nearly 3 decades, Colette Wintle who is a female haemophiliac infected with hepatitis B and C and exposed to vCJD through her factor concentrate treatment taken to help stop bleeding. Many haemophiliacs were infected during the 1970s and 80s when blood was taken from virally high-risk donors such as drug addicts, gay men and sex workers and plasma products were imported from the US. As well aa the many problems of living with multiple viruses, Wintle has long highlighted the difficulties of being accepted as a haemophiliac in a misogynistic environment where even some male haemophiliacs have been confrontative and denied her medical status.

Regarding female haemophiliacs, Rare Disease Highlighter stated,

Miller and Bean, in their study published in Haemophilia on the genetic causes of hemophilia in women and girls, concur. They wrote, “The dogma that hemophilia affects males and is transmitted through unaffected females has over centuries hampered the recognition that women and girls with hemophilia may bleed as significantly as affected males.”

It was only around the mid-20th century that the medical world began to recognize and discuss cases of female hemophiliacs. 

The Centre for Disease Control state,

Hemophilia can affect women, too

Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of hemophilia. A female carrier can also pass the affected X chromosome on to her children.

Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis. Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is important to raise awareness about this fact to help women with hemophilia receive the care and support they need to live healthy lives.

Wintle who helps inspire others and was instrumental in working with the UK Haemophilia Society over 2 decades ago on their campaign titled “Women Bleed Too” has often highlighted there are some differences in the way female haemophiliacs bleed compared to men sadly often downplayed or forgotten. Here is Wintle’s experience of being a female haemophiliac in her own words.

Life with a bleeding disorder as a woman

In current climes women and girls are having to fight harder than ever before for recognition of their gender and biological sex. So it is now even more important that as girls develop into womanhood, and adapt to the natural evolvement of physiological changes in their bodies, they are supported through their experiences with periods, childbirth and menopause. This is especially important for females who have inherited bleeding disorders such as Haemophilia A, Haemophilia B, Factor X1, and Von Willebrands. All of these bleeding disorders impact on the quality of their lives, and they are particularly vulnerable in the healthcare sector where knowledge and understanding of these conditions has not received the recognition they so deserve in comparison to males with inherited bleeding disorders.

I am a female haemophiliac who was born into a family with a long history of the condition Haemophilia A, commonly known as Factor 8 deficiency. I was diagnosed at the age of three in 1962 at a time when the medical profession only recognised women as carriers of Haemophilia but not symptomatic of the condition! In my family, a well- respected haemophilia consultant researched my family history and discovered evidence covering a 200 year period of female relatives who had bled far more profusely than their male counterparts! Incredibly, it has taken until 2021 for the medical profession to finally accept and write about female haemophilia. Throughout my life I have received poor substandard treatment and suffered unnecessarily due to the ignorance and patriarchal attitude of many haemophilia clinicians, who thought they knew better than I,  living with the condition of Haemophilia. I hope that by speaking out over my lifetime and challenging the medical fraternity it has influenced the thinking and attitude towards women who bleed.

This was my experience of growing up with Haemophilia. When I was a child I was as adventurous and active as any other child and inevitably suffered from accidental cuts and  bruising and I experienced daily nosebleeds of varying severity. Although I was registered with a Haemophilia centre in Glasgow, I was never offered any haemophilia treatment, so I had to deal with small joint bleeds, muscle and tissue bleeds, and on one occasion had substantial bleeding from a dislocated elbow joint without any medical intervention. I spent months out of school with a substantial bleed that rendered my arm useless. I recall it was black from wrist to shoulder and twice the size of my other arm.

When I started menstruating at the age of thirteen, I bled for two weeks out of every month and over three years became severely anaemic. Each of these experiences had an impact not just on my health, but  on my schooling both in primary and secondary education. It alienated me from social interaction with my contemporaries and I struggled with my self- esteem and confidence. At no point was I ever provided with specialist medical support, advice or treatment! It was only after years of persistent problems with tonsillitis that I had my first ever treatment for post operative haemorrhaging.  I was treated with clotting factors (which I discovered 26 years later were imported from the US) and subsequently developed the life changing condition  of chronic Hepatitis. I had been exposed to Hepatitis C!

Further need for blood clotting treatment in 1982 and 1985 resulted in reinfection with hepatitis B and C placing my liver under additional attack and now co- infected with Hepatitis viruses. During the many hospitalisations throughout the 1990’s, I repeatedly pointed out that the level of bleeding I was experiencing was disproportionate to the diagnosis of being a mild haemophiliac, I insisted on the doctors revisiting the genetic diagnosis from 1962 and was found to be carrying a second bleeding disorder—- Factor 11. My instinct had been correct!  I had for many years been undertreated and suffered blood loss that could have been prevented. As a young woman I had to suffer in silence for years and deal with the indifference of the doctors who were charged with my medical care.

Even in childbirth I was neglected by the medical profession.

Throughout my first pregnancy I was abandoned by the local healthcare providers without an assigned midwife because I resided outside of the health authority district in charge of my haemophilia care. At that time, I was registered at a haemophilia unit in London as there was not a local unit. Subsequently, I had very little care or consultation with anyone other than my GP until nearer to my due date. My daughter entered the world three weeks early and I was forced to make a stressful three hour journey to a north London hospital whilst in labour. Due to complications,  I underwent an emergency caesarean. Due to the geographical distance between home and hospital I was separated from the support of my family and husband.

During my two weeks incarceration in the hospital, I received extremely poor and often non- existent nursing care, which resulted in me suffering an internal bleed on top of my caesarean wound. It took a week for the doctors to attend to it, scan and treat me. Because of this appalling lack of care, I was forced to remove my IV line delivering much needed treatment, because there was simply no one to take care of my new baby, who was left in a cot at the side of my bed. What should have been a wonderful experience turned into a miserable one and reduced me to tears. I struggled to recover from this for a long time afterwards, and this was in addition to also suffering the symptoms of an ongoing liver condition!

As time went on my health deteriorated and I was forced into early retirement from my job as a nurse. Many other serious illnesses followed and major surgeries including the loss of an ectopic pregnancy and the loss of a twin pregnancy. At no point was I ever offered counselling or practical help but had to soldier on as I had previously. As my liver disease progressed, I was encouraged to undergo anti- viral chemotherapy treatment to eradicate the Hepatitis virus. I was left to administer the treatment by self- injecting with Interferon and Ribavirin medication. It was a terrible experience physically, mentally and emotionally with no assistance whatsoever from any healthcare workers. The treatment caused extreme physical damage. I was in constant pain, and I also developed other medical conditions. Worst of all, it caused an early onset menopause.

Yet again there was no available access to care, advice, counselling, or medical treatment. I experienced numerous unpleasant symptoms and side effects such as night sweats, itching skin , mood swings, increased fatigue, hair loss and flooding until many years later I was offered a coil insert which controlled blood loss. I had to put up with all these unpleasant symptoms over a period of twenty years.

When I consider my lifetime of living with haemophilia and all that I endured at the hands of health care providers, I realise that it has been a long continual battle to get the level of care I should have received. Much of this caused by the resistance of the many doctors to acknowledge my experiences and who dismissed and ignored my obvious medical needs. As a woman living with haemophilia, I believe even more strongly now that we must remain vigilant in protecting  future generations of women with inherited bleeding disorders, and their right to access the same standard of healthcare available to men. In recent times there has been a shift in attitudes which I am very glad is evident in the research being published and reported in medical literature currently. There is greater awareness of woman with bleeding issues now,  but it is vital that we ensure going forward,  that no one should experience the battle for professional medical care as I did.

Colette Wintle

End

The NHS “Overview” of Haemophilia largely avoids mentioning biological sex in its online information pages other than to say, “Haemophilia is a rare condition that affects the blood’s ability to clot. It’s usually inherited. Most people who have it are male” and advises to “avoid contact sports such as rugby.” However this alone does not help when it comes to those wishing to learn about how women may bleed as in the sections about types of bleeding, it simply ignores periods, childbirth and the menopause. (Also, to make a point, it can be highly uncomfortable indulging in any sports with a headache, painful cramping and heavy menstrual bleeding though that appears to be missed.) See following,

https://www.nhs.uk/conditions/haemophilia/#:~:text=Haemophilia%20is%20a%20rare%20condition,sticky%20and%20form%20a%20clot.

Now after years of misogynistic treatment with regard to female haemophiliacs bleeding, there are attempts to stop referring to the words “girls”, “woman” and “women” in relation to periods even if it did appear in the NHS haemophilia section. Today the Metro published an article on a separate section on menstruation in general with the title, NHS guidance on periods doesn’t mention girls or women once. The Metro states,

An NHS website about periods has triggered a debate for using gender-neutral language instead of the terms ‘girls’, ‘woman’ or ‘women’.

Bloody Brilliant was commissioned by the Welsh government and the NHS last year, costing the taxpayer £84,000.

Is this yet another way to write women out of the equation and lesson their voices? Females identify with these words and its particularly helpful in medical conditions where through biological sex, conditions may present somewhat differently in men and women such as haemophilia.

As Healthline explained…

A woman’s period and hormonal changes are the result of her natural reproductive cycle, sex therapist Janet Brito, PhD, LCSW, CST says. “The hormonal changes she endures are in preparation for possible conception. [Cisgender] men do not experience the cycle of producing ovocytes, nor do they have a uterus that gets thicker to prepare for a fertilized egg. And if conception does not occur, they do not have a uterine lining that will be released from the body as blood through the vagina, which is what is referred to as a period or menstruation,” Brito explains.

“In this definition, men do not have these types of periods.”

Individuals can present as who they wish to be, that is their choice however they can’t simply cancel out biological sex nor should they, nor the fact that women and girls will bleed differently to men through having their period, childbirth and throughout the menopause and the implications and complications that may bring. Female bleeders and service providers need to educate themselves, learn how to manage these times, access and provide support and language is important. So, when so called “woke” crosses the line and starts to verge on the damaging and sometimes dangerous, and biological facts are obliterated, then for the sake of good health, woke is best cancelled out!

Ginger Rogers once said about dancing… “I do everything the man does, only backwards and in high heels!” In terms of haemophilia, women get most of the bleeds men get (bar those related to cock and balls) but in addition add on periods, pregnancy and the menopause, whilst dealing with an often male orientated plan of care and then facing misogyny!

Link, for further Information on women who bleed

How bleeding disorders can affect women (UK Haemophilia Society)

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.

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Contaminated Blood: Susan Deacon missed an opportunity to view campaigner’s damning evidence in 2000 which should have led to a Public Inquiry.

Susan Deacon who recently gave evidence to the Infected Blood Inquiry
(Image via the Inquiry)

On Friday the 28th July 2022, Susan Deacon gave evidence to the Infected Blood Inquiry chaired by Sir Brian Langstaff which is investigating how haemophiliacs became infected with HIV and hepatitis viruses through their factor concentrate, blood product treatment in the 1970s and 80s. (It is also looking at cases of infection through whole blood transfusions though this is separate to the case of haemophiliacs.) Deacon was the Member of the Scottish Parliament (MSP) for Edinburgh East and Musselburgh from 1999 to 2007 and served as Scotland’s first Cabinet Minister for Health and Community Care following the creation of the Scottish Parliament in 1999.

From the mid 90s/early 2000s there was growing pressure across the UK for a public inquiry as haemophiliacs were finally being told they had been infected with hepatitis C as well as HIV, in many cases, the positive test results only given to them several years after being tested for HCV. This resulted in deep concern and anger from haemophiliacs and pressure to find out more regarding the circumstances of their infections and why results had been withheld.

Over two decades ago, They Work For You reported the following question put to Deacon and her response.

Brian Adan SNP

Question S1W-5627 To ask the Scottish Executive whether it will commission an independent inquiry into hepatitis C and other infections contracted from contaminated blood products in Scotland

Susan Deacon Labour

A fact-finding exercise into specific aspects of this issue has been underway for some months now. I met with the Haemophilia Society in September 1999 to discuss their concerns first hand and thereafter tasked my officials with ascertaining the facts surrounding the heat treatment of blood products for haemophiliacs in the mid-1980s. This will assess whether haemophilia patients in Scotland were exposed to the risks of the hepatitis C virus through blood products longer than they should have been, given the state of knowledge at the time. The outcome of this investigation will allow me to decide whether any further action is warranted.

The Haemophilia Society, the Scottish National Blood Transfusion Service and the Scottish Haemophilia Directors have all been asked to provide information. My officials are currently analysing the information gathered. This is a complex area and it would be premature to comment on possible outcomes until all the facts have been properly examined. I have undertaken to make the findings available to the Health and Community Care Committee and to the public.

https://www.theyworkforyou.com/spwrans/?id=2000-04-11.S1W-5627.h#gS1W-5627.q0

For long standing campaigners that were around at that time, this was instantly problematic and the following gives a broad overview of campaigning between England and Scotland at a time when Scotland had become newly devolved but dealing with infections that had occurred under a UK wide Westminster government.

The then Haemophilia Society had been slow on the uptake regarding campaigning for hepatitis C. The Manor House Group (Founded by the late Peter Mossman and the late Peter Hughes), Haemophilia North (later known as, Haemophilia Action UK, this author’s group) and Colette Wintle (Independent Campaigner) had all begun campaigning within a week of each other in 1994. It took a further year for the Society to take hepatitis C seriously and then only under pressure from the groups and with great reluctance and resentment.

When Grayson called for “compensation on a parity with Eire” in 1996 writing to the Society on this issue, the Society looked at the Eire scheme then sold out asking government for a “hardship fund” as opposed to full and proper compensation. Haemophiliacs with HIV had already received an ex-gratia payment for their infection in 1991 but had been made to sign a hepatitis Undertaking named the “waiver” by Grayson not to take legal action for hepatitis infections. It was only later in 1994 that Grayson and her late husband Peter Longstaff were told that he was infected with hepatitis C though a test result obtained showed he tested positive in 1992.

Longstaff had been tested without pre test counselling, without his knowledge and permission using blood taken to measure his clotting levels and his positive test result had been withheld. In addition, they then found out that key evidence had been withheld from litigants on the dangers of this HCV virus within the HIV litigation documents which were already known to lawyers way before their clients signed the waiver. The couple then realized that in order to take a case to court for hepatitis infection(s) they must first access legal aid to overturn the waiver showing what had happened and that this couldn’t be deemed “informed consent”. This was the catalyst that sparked their setting up a campaign group in 1994.

When the Society did launch their campaign on hepatitis C in 1995, they then made a dreadful decision to divide the haemophilia community by campaigning only for those that had been infected with HCV but not HIV, this was despite the fact that almost all haemophiliacs infected with HIV were also infected with hepatitis C. At one point when Grayson tried to enter parliament to attend a campaign event, she was confronted by the then CEO who made clear she wasn’t welcome and stated that her husband “had had his money”. What Karen Pappenheim didn’t address, was that HIV positive haemophiliacs that were now under the Macfarlane Trust which provided financial assistance had not received a penny for hepatitis C, nor was it part of the Trust deeds. Jim Cousins, Grayson’s MP at that time came out of his office to escort her into Westminster Hall.

The Society were also refusing to look at key evidence from campaigners on many different aspects of hepatitis C including the delays in bringing in a test, the testing of haemophiliacs without their knowledge and permission and the withholding of positive test results. Despite offers from campaigners to work with the Society and share emerging evidence, this fell on deaf ears by an organization increasingly defensive in its position. There was a great deal of tension between the Society and campaigners at that time, not helped by what campaigners viewed as a “conflict of interest” in that the organisation received funding from the international pharmaceutical companies linked to their infections.

In this hostile environment, Grayson and Wintle decided to form a quiet alliance with Scottish campaigner Phil Dolan who was to become a trustee of the Society and in a sense a “spy in the camp” regarding the Society’s actions and thinking. There were some signs that Scotland might be slightly “softer” than Westminster in investigating the infection of haemophiliacs and providing recompense, so they hatched a plan to release evidence through Scottish media a day after key stories broke in Newcastle where Grayson and Longstaff had just formed the Bad Blood campaign jointly with journalist Louella Houldcroft of the Journal. A decision was taken that Grayson would share her evidence with Scottish journalists that could be used cross border but local Scottish campaigners would do the interviews to provide a picture of their own experiences of infection and the issues around this locally.

The Haemophilia Society at that time was not well informed, was half- hearted in its own campaign stance for fear of potential liability issues and aggressive to campaigners attempting to investigate what went wrong. The Society had actively campaigned to continue importing US factor concentrates against safety advice, even after the advise from Dr Spence Galbraith (Public Health Laboratory Service) was to withdraw this treatment from the shelves immediately in May,1983 to avoid infection of haemophiliacs with the AIDS virus. It was against this background that Deacon was engaging with the Society but we do not know how much of this information regarding the organization’s breakdown of their relationship with many campaigners would have been known to her at that time.

Deacon’s fact- finding exercise was limited in nature and focused mainly on heat treatment. It did not appear to give consideration to those who were very likely infected with hepatitis C through their first shot of imported US factor concentrates that had been used on children at York Hill hospital and any safety violations in that regard. As haemophiliac Colette Wintle discovered, imported treatment was used on her in 1976 whilst a patient at Glasgow Royal Infirmary despite a warning letter being sent to Westminster government official a year earlier warning of the dangers of using US plasma and the increased hepatitis risk due to “high-risk” paid donors being used.

One person who did understand the dangers of US products was Dorothy- Grace Elder, Member of the Scottish Parliament for the Glasgow Region 1999 to 2003 with whom Grayson had made contact and spoken by phone As a former journalist, Dorothy-Grace told this author she had become aware of the differences in the collection of US plasma from paid donors compared to those in the UK, blood taken from better screened, volunteer donors and was determined to raise this issue in relation to those treated in Scotland.

Worried that the Haemophilia Society would only have shared limited concerns with Deacon, and withheld campaigner’s evidence sent to them, Grayson decided to write to the minister offering the opportunity to meet her, with Dorothy-Grace included, to discuss evidence that might help push for a full public inquiry in Scotland.

Grayson has shared this letter to Deacon with the Inquiry and the text can be viewed here:-

02/07/2000.                                                                                  Carol Grayson,

                                                                                                     PO Box 782,

                                                                                                     Newcastle Upon Tyne.

                                                                                                     NE99 2UW.

      Re: Haemophiliacs Infected with Hepatitis C Through NHS Blood Products.

Dear Ms Deacon,

                            I was delighted to read an article in the Scottish Daily Record & Sunday Mail Ltd June 22nd 2000 that you are ordering a report into how people in Scotland contracted hepatitis C through blood transfusions. Yourself and Dorothy –Grace Elder are to be commended for the responsible attitude you are taking with regard to this issue.  My MP Mr Jim Cousins (Newcastle) has supported my partner a haemophiliac infected with HIV, hepatitis B and hepatitis C through NHS blood products for several years now in our fight for a public inquiry and recompense. We lost my partner’s brother, also a haemophiliacs to AIDs in 1986.

     I have enclosed a letter sent to Mr Milburn asking a number of pertinent questions to which I received the extremely unsatisfactory reply enclosed! I would be grateful if you in your capacity as Health Minister for Scotland could stress to Mr Milburn the importance of answering the questions put to him and ordering a public inquiry in England into how people became contaminated with these viruses.

     May I suggest that you look at the Lindsay Tribunal currently taking place in Ireland (Tribunal updates available by e-mailing haemophiliasociety@eircom.net and requesting copies) and also the Krever report (Canada) if you have not already done so. Some of the information with regard to imported human plasma products is relevant to England, Scotland and Wales also. I think it is essential that any report looks at where the plasma was sourced. It is not good enough for the Department Of Health to claim that nothing could be done to avoid infection with HIV and hepatitis C prior to blood tests becoming available. As a qualified Senior Nursing Sister (although now a full time carer) I am appalled that plasma was collected from populations known to be “high risk” such as prisons with hepatitis infection rates 12 times higher than the general population. It was also collected from paid donors in centres in Central Africa (the epicentre of Aids), Central America, (Nicaraguans burnt their centre down it was so bad), skidrow “hotspots” of North America (highlighted in the “World In Action” documentary program “Blood Money” as far back as 1975) and at times from cadavers which is immoral and illegal.

     I have collected substantial information on “tainted blood” over a number of years and would be happy to meet with yourself and Dorothy Grace -Elder at your convenience to discuss this. I feel much of this information has been suppressed as this information has far –reaching consequences for those involved in the multi-million dollar blood industry and could be very costly for our Department Of Health!

     The pharmaceutical firms manufacturing blood products imported to the UK which should be looked into are Baxter, Hyland Travenol, Alpha Therapeutics, Green Cross Japan, Cutter, and Armour.  Some are now defunct or have been taken over and changed their names. Prisons involved in plasma collection were Arkansas (licences renewed I am told by none other than the former Governor Of Arkansas, Bill Clinton), Angola Prison and Arizona State Prison. I am in touch with campaigners in Arkansas who can provide information from both prisoners who donated to the prison plasma program and people who worked at the plasma centre. I hope I can be of assistance in bringing to light the appalling practices with regard to the lack of safety and lack of checks /quality controls on imported blood bought by the Department Of Health which has resulted in so many needless deaths in the UK as well as the exploitation of poor, sick and vulnerable groups in other countries to provide plasma for the blood industry.

     Canada now has a major criminal investigation into how so many of their haemophiliacs came to be infected with HIV and hepatitis C though imported American plasma. Canada, Italy and Southern Ireland are among those countries that have had public inquiries into their own blood services and imported treatment and provided compensation to infected haemophiliacs and their families, including widows and dependants.

     My partner has just been granted legal aid against the Department Of Health!     Over 1200 haemophiliacs were infected with HIV. 800 are now DEAD.

     95% of those originally infected with HIV are also now CO-INFECTED with hepatitis C (HCV).

     According to Haemophilia Society statistics over 4000 haemophiliacs are infected with hepatitis C alone. (MONO-INFECTED)

     120 haemophiliacs are now DEAD from hepatitis C. The majority of these deaths were from the C0-INFECTED group.

     Hepatitis C has now taken over from AIDs as the biggest killer of haemophiliacs in Europe and the United States.

     Thank-you for taking the time to read this.

                                           Yours sincerely

                                    Carol Grayson (Campaign Co-ordinator Of The 2/2 Campaign, A Second Campaign For A Second Injustice.)

Tragically, Deacon (or those in her office) did not take up Grayson’s offer and an opportunity was missed to view important evidence that should have led to a full public inquiry, evidence now being used by the Inquiry to question key witnesses.

Dorothy-Grace continued to raise her concerns over blood safety highlighted during the Health and Community Care Committee meeting on the 25th Oct 2000 attended by Susan Deacon where the following exchange took place,

Dorothy-Grace Elder:I lived through the 1980s—

The Convener:I think we all did—even Duncan Hamilton.

Dorothy-Grace Elder: I clearly remember being involved with the people who were clamouring for a heat treatment centre in Scotland. The concern was HIV, not hep C, which, as the minister correctly says, was not recognised until 1989. However, people realised that they had something exceedingly dangerous on their hands and that, often, another virus was involved. I also remember that the sums of money involved came to only a few hundred thousand pounds and that Scots pleaded with the Conservative Government to give them that to conduct the heat treatment. How can the Government today body swerve the tragedy that has occurred due to hep C subsequent to the HIV tragedy? Will the minister at least consider ex gratia payments to the families?

The Convener:Would those be technical ex gratia payments, Dorothy-Grace? I really do not think that that was a technical question. Other people are waiting to ask non-technical questions.

Dorothy-Grace Elder:People are suffering, Margaret.

The Convener:I know. The minister may answer the question.

Susan Deacon:Do you want me to answer Dorothy-Grace Elder’s question now, convener?

The Convener:Yes.

Susan Deacon:Members are asking a range of technical questions, many of which, I hope, are addressed in the report. If the committee wants to take it up, the offer remains for one of our medical advisers or perhaps the deputy chief medical officer, who was involved in the report, to come along to discuss the matter further.

Dorothy-Grace Elder referred to ex gratia payments. Compensation has been discussed quite fully. Let me differentiate between negligent and non-negligent harm. The essence of the report was to investigate whether there had been negligence during the period in question, which would require the NHS to pay compensation on the ground of harm having resulted as a consequence of negligence.

Having examined the information carefully, we have found no evidence to suggest that there was negligence, for the reasons that we have outlined and, as Richard Simpson indicated, because of the chronology of events and when medical and scientific knowledge advanced.

There is also the question of non-negligent harm. The NHS not paying compensation for non-negligent harm has been a generally held principle. That was revisited in these cases, two years ago by the UK Government, by previous Conservative Governments and now by the Scottish Executive.

Having examined the issue we do not see there being a case to change that principle in this instance. I am bound to say that all medical treatment carries a degree of risk. The issue is about the balance of risk and how we deal with it.

Dorothy-Grace Elder:We are not talking about treatment.

The Convener:Let the minister finish.

Susan Deacon:I am happy to take a further point from Dorothy-Grace Elder.

The Convener:But I am not. Nicola Sturgeon also has points to make on this issue.

By the 1st February 2001, a significant event had already taken place over the border……….a small step on the road to justice for at least one haemophiliac given US factor concentrates in Scotland.

One New Zealand child visiting his relatives in Scotland and infected with HIV in 1980 at York Hill hospital after bleeding whilst on holiday had received a settlement direct from a US pharmaceutical company. The father of the boy, Ian Reddie, had come to England and approached Grayson for advice on tracing medical records from York Hill and a search was put in place. Subsequently armed with the evidence he needed (and keeping in mind his son had never received factor concentrates before his visit to Scotland), he flew to the US to confront the company and they paid up for the boy’s infection for both HIV and hepatitis C, albeit a low amount.

On 14th March 2001 Dorothy- Grace again tried to highlight her numerous concerns regarding safety of both Scottish and US products at the Health and Community Care Committee. The following are excepts from her and other participants as follows:-

Dorothy-Grace Elder: I dare say that you have
read the written statements of the Haemophilia
Society. Can you comment on the fact that
approximately 400 haemophiliacs in Scotland
depend on the safe factor VIII? Could it not have
been considered the duty of the Scottish National
Blood Transfusion Service to adopt the tested
heat-treatment methodology that was used in
England?


Angus Macmillan Douglas: I shall ask Peter
Foster to answer that in detail in a moment. Let
me first clarify your question, which I did not hear
properly as the door opened and closed in the
middle of it. Are you asking why Scotland was not
able to introduce the hepatitis C-safe factor VIII
product in autumn 1985, although it had been
introduced for a minority of patients in England?


Dorothy-Grace Elder: Yes.

Further on she attempts to raise questions on the use of US blood products in Scotland as follows:-

Dorothy-Grace Elder: Convener, may I ask—
The Convener: No.
Dorothy-Grace Elder: —about American blood
imports—
The Convener: No.
Dorothy-Grace Elder: —of skid row blood—
The Convener: I said no, Dorothy-Grace

Dolan also contributed,

Philip Dolan: First and foremost, we believe
that an independent inquiry would examine all the
issues that have arisen in the contamination of
blood products.

(Phil Dolan would later be awarded an MBE for his services to haemophilia.)

Another old friend of this author also spoke out, the late Patricia McAughey who shared information from the Haemophilia Society on so called campaign updates as a Scottish representative (another “spy in the camp”). Pat’s husband, John (also now deceased) was to later share some of his recombinant treatment with Grayson’s husband which was kept in the event of an emergency bleed when the Newcastle Health Authority refused to supply this on the grounds of cost resulting in Longstaff taking his case to the High Court in London. (The Judicial Review was lost on the grounds that it would open the floodgates for other treatments beyond haemophilia if the case was allowed to go through and a precedent set.) Grayson would catch a train up to Scotland to receive this treatment when Longstaff was on treatment strike refusing human plasma products highlighting the need for ALL haemophiliacs to be given recombinant not just a select few through post code lottery. Here is McAughey’s comment,

Patricia McAughey (Haemophilia Society):
My husband has severe haemophilia A and
hepatitis C. His treatment was changed in 1980
from cryoprecipitate to factor VIII. We were given
absolutely no warning that that product could
transmit any viruses. Had he been given a
warning, he would not have taken the treatment. It
is false to say that all bleeds in haemophiliacs are
life-threatening—they are not. They are
uncomfortable, painful and troublesome, but not all
are life-threatening. Haemophiliacs can usually
distinguish between what will be a troublesome
bleed and what will be a serious bleeding episode.
I can speak only for my husband and me, but had
we been warned of the risks, we would not have
taken the factor VIII.

Dorothy- Grace was not one to give up and continued her questioning, with Dolan chipping in to support.

Dorothy-Grace Elder: That is one of the points
that I wanted to close in on. The submission says
that the original remit of Susan Deacon’s internal
inquiry was far too narrow, because it focused
almost exclusively on the SNBTS. The word
negligence has been used. Do you want the
inquiry to be widened into a public inquiry,
involving bodies such as the Scottish Office—as it
was at the time—the Department of Health in
London, clinicians and political decision makers of
the time? Nodding your heads is good, but will you
answer ―yes‖ for the Official Report?
Philip Dolan: The answer is yes. We asked for
that when we met the minister on 14 September
1999.
Dorothy-Grace Elder: What input did you have
to the remit? Who decided the narrowness of the
remit? Did you request of the minister that bodies

such as those that I mentioned should be
involved?
Philip Dolan: Initially we asked for a public
inquiry. We had no further discussion with the
minister after we asked for that. The minister said
that the new Scottish Executive and Parliament
would be transparent and that everything would be
out in the open. However, the inquiry was not
transparent. We did not get the opportunity for a
public inquiry. To this day, I still do not know who
the author of the report was. We can only
speculate on that.
The Convener: Another point has not been
dealt with. The report was significantly delayed. It
did not come back when we expected it to.
Dorothy-Grace Elder: I want to ask a quick
question. As has been mentioned, Mr McKissock
is too ill to be here. He intended to deal with the
matter of compensation.
The Convener: I am sorry, Dorothy-Grace. One
of your colleagues will deal with compensation;
Shona Robison will come to it in a second. John
McAllion will ask the next question.

The full discussion can be read here,

https://www.parliament.scot/api/sitecore/CustomMedia/OfficialReport?meetingId=1728

This week, Katie Scott QC at the Infected Blood Inquiry did ask a question filed through Grayson’s legal team and probably others, regarding whether Susan Deacon regretted not meeting more campaigners when she was in office. Deacon indicated that she did.

It is one of the great myths surrounding the Contaminated Blood scandal that key evidence was not available until a new campaigner Jason Evans emerged in 2017 to “discover” incriminating documents, Far from it! Certainly from 1994, campaigners were beginning to build up a mass of documents including accessing the evidence on government decision making, policy and practice from the HIV litigation. They had important papers from the 1996 settlement in Eire and key evidence from legal cases won in the US and Canada. In addition they had acquired some UKHCDO minutes, evidence of experimentation on haemophiliacs and information was being gathered from medical records and international journals. Then there was Douglas Starr’s book, Blood: An Epic History of Medicine and Commerce published in 1999. Grayson’s mother had read a review when it first came out and sent it to her which again helped to open her eyes especially on the practices of the US pharma companies.

What is also disturbing is how so many within the media have reported badly rehashed stories minus any proper referencing and ignoring the dates the original evidence was presented by long standing campaigners to government ministers. They have rewritten history in a way that has helped those responsible for the scandal and for the most part failed to deal with written complaints for media corrections from members of the haemophilia community. This is by design not accident as editors have repeatedly been shown evidence of the correct and far earlier dates of discovery that they do not want to acknowledge or publish.

It wasn’t a question of having nothing with which to tackle ministers, doctors, UK authorities and pharma companies from the 1990s onwards but that papers were either not passed to politicians, were sat on by civil servants and not addressed, or were deliberately blocked. To repeat the words of Andy Burnham, former health secretary, “this is a criminal cover-up on an industrial scale.”

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”

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Contaminated Blood: Hazel Blears inadvertently drew attention to alleged negligence during her evidence to the Infected Blood Inquiry

Hazel Blears giving evidence to the Infected Blood Inquiry where her “line to take” re compensation with government inadvertently highlights comparisons in safety violations between US and Canada that affected and infected UK haemophiliacs
(Image, via Infected Blood Inquiry)

The author of this post Carol Grayson (Haemophilia Action UK) and her colleague Colette Wintle (Independent campaigner) both of whom have fought for decades for the victims of what Lord Winston called “the worst medical treatment disaster in the history of the NHS” were travelling by train on Friday 21st July 2022 when Hazel Blears gave her evidence to the Infected Blood Inquiry. Blears was a former Parliamentary Under – Secretary (Department of Health between 11th June 2001 and 13th June 2003. It was only after Blears gave evidence that the two were able to review the content of her testimony.

During the questioning by Katie Scott QC, a report was flagged up from the Hepatitis C Working Party which was set up by the Haemophilia Society in Sept 2001 and came up with proposals that the UK government should provide recompense for haemophiliacs infected with hepatitis C through their treatment with factor concentrates during the 1970s and 80s based on a Canadian model. Haemophiliacs infected with HIV through blood products used to treat their hereditary disorder where the blood does not clot sufficiently had already received “ex-gratia” payments in 1991 in an out of court settlement and also received ongoing monthly payments from the Macfarlane Trust. It is important to note that 99% of haemophiliacs with HIV were also coinfected with HCV but no money for this was included in the litigation agreement which contained a controversial hepatitis undertaking known as the “waiver” not to take action for infection with hepatitis viruses.

Grayson and her late husband Peter Longstaff were the first to access legal aid in the 1990s in an attempt to overcome this waiver in the hope of going to court to hold government to account for hepatitis C (and B if possible) using the HIV litigation documents that were never shown in court. Many of these documents held vital evidence not only on HIV but the dangers of hepatitis in pooled plasma known from at least the 1940s as documented in medical journals. (Though what was known by government and professionals differed considerably to what was known by haemophiliacs and their families.)

Grayson and Longstaff had a direct connection to the Hepatitis Working Party Report in that the Chairman was none other than Matt Kelly QC (Former head of the Bar Association) who was the barrister who had been approached for a legal opinion by the couple’s solicitor Denis Whalley on whether or not the waiver would stand legally and if “informed consent” was sought by Peter’s lawyers in 1991.

Grayson and Longstaff were alleging negligence by the UK government regarding his multiple viral infections and in addition unethical behaviour by the HIV lawyers in that key evidence on the dangers of both HIV and hepatitis were withheld from haemophiliacs at the time of the signing the waiver. They alleged that Peter had not been told he was hepatitis C positive so could not give “informed consent”. His medical records show he was not tested until 1992 and the result was withheld until 1994 when he was notified he was positive in the presence of Grayson (and without pre test counselling having taken place.)

Kelly had been notified that the couple were in conflict with the Haemophilia Society at that time whom they regarded as their enemy. Grayson and Longstaff made an initial visit to Chambers with Whalley where they had arranged for Kelly to receive and examine documents from the HIV litigation to back up their case. These included the Dr J Garrott Allen 1975 letter, the Oxford 1982, Rizza and Bloom “Cheaper than Chimps” letter and the 1983 Dr Spence Galbraith letter among others which the HIV litigation lawyers had never shown to clients regarding hepatitis risk and the later HIV risk and they highlighted that one of the lawyers had written in a note found by the couple in legal offices in Newcastle that “I can no longer lie to my clients”.

By the time they returned to Chambers on a second visit to hear Kelly’s legal opinion, much to their shock they learnt he was working with the Haemophilia Society that had argued to keep dangerous US products on the shelves when they should have been immediately withdrawn on the grounds of safety in May 1983. Grayson and Longstaff were horrified by Kelly’s actions and felt totally betrayed! Their expert witness Professor Eric Preston had also joined the Hepatitis C Working Party.

The subsequent report for financial assistance headed up by Kelly appears to have been a compromise to stop Longstaff from going to court as Kelly had concluded that the waiver could not have been “informed consent” and everyone but Pete knew of the dangers of hepatitis C when he signed the Undertaking.

On the first visit before Kelly had examined the HIV litigation evidence, he suggested Grayson might be mistaken as how could their lawyers behave as they did withholding key evidence regarding knowledge of risk especially when it was known to them back then that 99% of haemophiliacs infected with HIV were coinfected with HCV. On the 2nd visit to Kelly he had read the evidence and concluded Grayson was in fact correct though he did not appear too happy at what the couple had discovered.

Grayson and Longstaff knew if they were able to overturn the waiver they could then fight for compensation for hepatitis C using the original HIV litigation documents. They were concerned that Kelly was in fact engaged in “damage limitation” to protect the original HIV lawyers who were responsible for the waiver and in their own words lied to their clients! Kelly once said to the couple, did they realize that if they went to court they would be challenging 4 main medico- legal firms of that time… and what effect would that have regarding confidence in the system?

Grayson was so angry with Kelly that she sought legal advice with the then Office of Supervision of Solicitors (OSS) and was advised they had grounds for a complaint against Kelly through the relevant body that deals with barristers but Grayson was concerned as to who would believe her and Peter against the then Head of the Bar Association.

Grayson believed from the file of HIV litigation evidence shown to Kelly that it would have been difficult not to conclude that there had been alleged negligence on the part of government re infection with HIV/HCV and unethical behaviour on the part of their lawyers which may have influenced his decision to agree to head up the Hepatitis Working Party to gain some recompense for haemophiliacs? The last legal opinion from the HIV lawyers just before that case was settled in 1991 was never shown to their clients. The lawyers stated in writing between themselves that the chances of winning for those that had received US blood products had significantly increased as certain evidence not previously considered was examined, the problem was, time had almost run out. When the Hepatitis Working Party came to report in 2002, government were continuing their mantra that they wouldn’t pay compensation unless there was legal liability.

When questioned by Katie Scott QC on the Hepatitis C Working Party Report, Hazel Blear’s reluctance to consider recommendations for compensation made by Kelly and others was that it was based on the Canadian model where negligence had been found. Blears may have assumed Kelly had not seen anything that showed alleged negligence by authorities here, this author begs to differ.

Perhaps Blears was not then aware that UK haemophiliacs such as Longstaff had received some of the same Arkansas prison blood factor concentrates used on Canadian haemophiliacs. In 1998, Suzy Parker reported the following in Salon,

In a year when Arkansas scandals dating back to his governorship have returned to haunt Clinton, this one nearly toppled the government — of Canada. Arkansas’ prison-blood business created a health crisis in Canada that nearly brought down the Liberal Party government last spring. At least 42,000 Canadians have been infected with hepatitis C, and thousands more with the HIV virus, thanks to poorly screened plasma. Some of it has been traced back to the Cummins prison in Arkansas. More than 7,000 Canadians are expected to die as a result of the blood scandal.

and

More than 20,000 tainted-blood victims with hepatitis C filed a class-action suit against the Canadian government, alleging that sloppy screening protocols allowed tainted blood products from Arkansas prisons and elsewhere to make their way into Canada. 

It was Mike McCarthy (a key campaigner in Canada) who assisted Grayson sometime in the late 1990s /early 2000s regarding evidence including sending her gay donor posters where the pharmaceutical companies were targeting homosexuals for their “hepatitis rich” plasma and then used the surplus to top up the plasma pools for factor concentrates. UK haemophiliacs were on the receiving end of this plasma collected from gay men coming out of the bath houses in the Tenderloin district of San Francisco when it was known AIDS had emerged and hepatitis B was a marker for AIDS in homosexual communities? Treatment unfit for US consumption proven via batch numbers was “dumped” on the UK. Longstaff was documented as receiving US prison blood AFTER the plasma centre at Arkansas State Penitentiary was closed down on the grounds of safety, the treatment was never recalled in the UK. The US pharma companies didn’t accept Peter and Colette’s legal cases and settle without good reason.

To return to the comments made by Blears at the Inquiry, she was certainly correct regarding negligence in Canada. The BBC highlighted on 20th April 2001 that,

Canada’s Supreme Court has found the Canadian Red Cross guilty of negligence for failing to screen blood donors effectively for HIV infection.

The court upheld a decision by the Ontario Court of Appeal that the organisation did not exercise a proper standard of care in collecting blood in 1983-85.

Three suits were brought against the Red Cross by people who received tainted blood. Two of them subsequently died of Aids and the third is HIV positive.

The article goes on to highlight that because there was no blood test for AIDS at that time, the Red Cross were reliant on screening of donors as the most effective way of preventing infection. The BBC piece continues as follows,

The court concluded after comparisons with US Red Cross pamphlets on screening that the equivalent Canadian pamphlets were not as clear or effective in deterring high-risk donors.

An American Red Cross pamphlet issued in March 1983 warned sexually active gay men against giving blood because they were in a high-risk group for contracting HIV infection.

It said that people might be carrying the virus even if they felt in good health.

The Canadian pamphlet, however, merely focused on whether the donor felt healthy.

http://news.bbc.co.uk/1/hi/world/americas/1286705.stm

In a twist of irony, Blears vehement rejection of any UK government negligence and liability and focus on Canada has in fact inadvertently drawn Grayson’s attention to a fundamental flaw with US screening. in terms of the collection of plasma linked to the pharma companies (as opposed to the Red Cross) that relied on prison blood at Arkansas State Penitentiary right up to 1992. This flaw affected UK haemophiliacs.

Grayson acknowledges the albeit delayed attempt of the pharmas and the CDC to screen out gay donors in 1983 in the US as highlighted in the Red Cross pamphlet. She notes the action taken in the UK to end the use of prison blood collected here and stop gay men from donating due to the risk of AIDS.

HOWEVER, one aspect was overlooked that the pharmas and CDC, FDA and other bodies had not fully considered regarding US prisons that seriously compromised safety and no doubt led to the continued infection of haemophiliacs AFTER a ban on gays donating. The ban did not take into account specific prison culture and therefore had limited effectiveness with regard to improving safety.

Grayson’s own professional work as a Senior Nurse Therapist in the 1980s included teaching prison and probation officers regarding AIDS prevention and she visited prisons to educate on safety and safe sexual practise. The regional unit where Grayson worked provided assessment of prisoners, court reports and support for those leaving the penal system.

As Grayson learnt from her own experience of visiting prisons, although some inmates openly admitted to being homosexual, other male prisoners would also have unprotected sex with other men, including known drug users, even rape them but they would never in a million years self-identify as being “gay”.

The so called “straight” guys in US prisons would resort to furtive sex in the showers or behind locked cell doors, seeing other men merely as a temporary fix, out of necessity, a convenient orifice in which to plant their penis or accommodate another man’s erection in the absence of a female partner. They were never going to self exclude from selling their plasma because that would label these macho guys as “queer” and also selling their blood for a few dollars secured the odd luxury item. So as long as prison plasma collection continued and the UK allowed factor concentrates made from US prison plasma to be imported, the risk of AIDS from men who had sex with men continued.

As Grayson understood having a qualification in Health Education… the language used in safe sex campaigns must be be straightforward language and terminology (explicit if required) which could be understood by the target audience. Although the Red Cross looked at gay donor behaviour, there were no warnings in prison leaflets for men who didn’t identify as gay but still participated in sex with men, no warnings for those who may be bisexual. It wasn’t just about excluding gay men but excluding ALL men who had sex with other men because of the HIV and hepatitis risk. There was also no consideration of the high level of male rape in US prisons which could spread deadly viruses.

In addition, even when heat treatment was introduced with factor concentrates, UK haemophiliacs were told to use up un heat- treated products including those manufactured with plasma from US prisons which could have a shelf life of up to 2 years before they would be given heat-treated products. So those haemophiliacs with factor concentrates in their home fridges could have injected themselves beyond 1985 leading to infection or reinfection with HIV and hepatitis C.

This article in the Washington Post (September 21st, 1980) highlights Arkansas State Penitentiary including torture and past sexual offences within Arkansas State Penitentiary in the late 1960s,

In the barracks, “convicts known as ‘creepers’ would slip from their beds to crawl along the floor, stalking sleeping enemies. In one 18-month period,” Stevens wrote, “there were 17 stabbings, all but one occurring in the barracks.

“homosexual rape was so common and uncontrolled that some potential victims dared not sleep; instead they would leave their beds and spend the night clinging to the bars nearest the guards’ station.”

https://www.washingtonpost.com/archive/politics/1980/09/21/arkansas-lets-the-light-into-brubakers-dark-ages-prison/b59ac713-dd24-4bdf-a511-5e90195b35d1/

Again Parker pointed out in Salon that,

the plasma program wasn’t the only source of scandal within the Arkansas prison system. In 1985 inmates began complaining loudly about prison medical care and rights abuses, including rape. That year Arkansas prisons had the highest number of inmate complaints of any state in the country. State Rep. Bobby Glover, a Democrat, became a champion for prisoners with stories of abuse. His office collected a raft of allegations, ranging from rape and other forms of abuse to bid rigging, theft of state property and the use of state property for private work and gambling.

Angola State Penitentiary was no different to Arkansas, the prison also collected plasma from prisoners for factor concentrates as highlighted in an Irish documentary made by journalist Paul Cunningham of RTE and as the Free Library highlighted, the prison magazine also documented rapes as mentioned below,

Another important positive event in the 1970s was the reorganization of The Angolite, the inmate published magazine of the penitentiary. Originally written and published by an all-white staff, its importance grew dramatically when Wilbert Rideau and Billy Wayne Sinclair became editors in the late 1970s. (258) Under their leadership the magazine became “a must read for corrections officials and prisoners’ rights groups across the world,” in the words of the New York Times. (259) The Angolite published exposes on prison rape, murders, executions, and the conditions inside the prison. In 1978, they won the American Bar Association Silver Gavel Award and the Robert F. Kennedy Journalism Award. (260) In 1979, Rideau and Sinclair received the George Polk Award in Journalism for Special Interest Reporting. (261) This publication, more than any other, exposed what life was like inside the penitentiary.

https://www.thefreelibrary.com/LOUISIANA+ANGOLA+PENITENTIARY%3A+PAST+TIME+TO+CLOSE.-a0568839707

The document, Plasmapheresis Centers in Correctional Institutions, An Information Booklet (November 1984) which Grayson acquired recognizes that, “using prison blood is controversial within the plasma industry itself” but makes no specific mention of how prisons would deal with the issue of men who have sex with men (that may not identify as “gay”) the high levels of rape in prison and how that would be dealt with in terms of both plasma donor safety and safety of the plasma recipient.

It is extremely difficult to prohibit or monitor high-risk sexual activity in prison and no guarantee a prisoner will make a complaint if raped and self exclude from selling his plasma. What he buys with his blood for money fee might be the only small pleasure he gets and some prisoners were allegedly paid in drugs. Even with a physical examination to determine health it would be unlikely to include an anal examination and if an anal examination was included it might only indicate recent sexual activity not that of the past, prisoners might also lie to conceal rape.

One prisoner Bryson Martel (who also used the name Kendal Spruce) did testify to the National Prison Rape Elimination Commission, he was raped by 27 inmates in an Arkansas prison after being sentenced in 1991, this began a year before the Arkansas prison plasma programme ended and within 2 weeks of being detained,

Rewire News Group provided an update on Bryson in 2010 as follows,

Bryson, convicted of check fraud, was repeatedly raped and beaten in an Arkansas prison. As a result of those attacks, he walked out of prison with a death sentence — not handed down by a judge or jury, but by the corrections staff who failed to keep him safe; Bryson contracted HIV because of the rapes.

Last June, he died of AIDS-related illness. “I know I had to pay the price for what I did, but I’ve paid double the price,” said Bryson before his death. “That check I wrote cost me my life.”

It wasn’t until September 4th, 2003 that President George W Bush signed into law the Prison Rape Elimination Act (PREA). As Florida Department of Corrections stated,

It was created to eliminate sexual abuse in confinement facilities including adult prisons and jails, lockups, community confinement facilities and juvenile facilities.  PREA includes forty-three (43) standards that define three clear goals, to prevent, detect and respond to sexual abuse.

As this 1st March, 2014 Independent article highlights even today little has changed regarding sex and rape in US prisons,

Sex in men’s prisons: ‘The US system cultivates rape. If you treat people like animals, they behave like it’

Human Rights Watch estimated in 2010 that 140,000 US inmates have been raped. Shaun Attwood has written three books on life inside and his latest, Prison Time, details the sex – consensual or otherwise – the prostitution, the pimping and the equal, loving relationships behind bars

https://www.independent.co.uk/news/world/americas/sex-in-men-s-prisons-the-us-system-cultivates-rape-if-you-treat-people-like-animals-they-behave-like-it-9155241.html

So we should thanks Hazel Blears for adamantly highlighting the UK government’s “line to take! regarding compensation and inadvertently reminding this author of the Canadian comparisons and the flawed US pharma company plasma screening and collection which continued to compromise the safety of UK haemophiliacs just as happened in Canada. The Red Cross had leaflets for deterring donors outside of prisons but Blears made no mention of plasma collection within prisons that was used to make factor concentrates and exported to the UK. Even if there had been leaflets designed to warn against the viral risks of men having sex with men distributed in prisons…it is highly unlikely the rapes would have stopped. The words which fit here for allowing such dangerous products to be given to UK haemophiliacs including children are NEGLIGENCE and LIABILITY. It was not only US authorities than continued to allow Arkansas prison blood to be collected until 1992 but UK authorities were responsible for allowing imported factor concentrates to continue to be used on UK haemophiliacs long after Dr Spence Galbraith called for US blood products to be taken off the shelves as a matter of urgency due to the risk of AIDS in May 1983!

There were gross double standards by the British government as they stopped the use of prison blood here, banned gay men from donating reducing the viral risk but continued to allow those receiving US factor concentrates to be exposed to US prison blood where men continued to have sex with men and raped and were subject to brutal rape sometimes by multiple males thus increasing the risk of infection with AIDS and hepatitis viruses. Doctors also failed to withdraw old un heat treated products extending the period of possible exposure and infection. There is a certain irony that US prisoners were able to take legal cases for rape and infection with HIV, and the states failure to protect inmates from harm yet it was so much more difficult for haemophiliacs that received their infected blood.

During the early 2000s, Grayson and Longstaff made contact with US lawyers with the help of Canadian and US campaigners which led to their participation in the “dumped” treatment 2nd generation litigation where UK cases were included providing they could supply the relevant batch numbers which could then be traced to source. Longstaff was identified as having the blood of many prisoners including at least one inmate recorded as being HIV positive. The venue for the cases deemed however that the US courts were “forum non conveniens” (not the right place for the cases to be heard) with the UK authorities viewed as the first line of defence regarding “duty of care” for haemophiliacs. The case concluded with a token settlement agreement with 4 US plasma companies highlighting that UK haemophiliacs and their families could have their cases heard in British courts.

Way back in April 1966, Dr J Garrott Allen highlighted in California Medicine,

The risk of serum hepatitis from transfusions derived from prison and Skid Row populations is at least 10 times that from the use of volunteer donors. For every 100 patients receiving a single transfusion, the attack rate is 0.3 per cent when the donor is of the family or volunteer type and 3.2 per cent when the donor is from a prison or Skid Row population.

The most practical methods of reducing the hazard of serum hepatitis from blood are to limit the use of blood by giving one transfusion instead of two, two instead of three, etc., and especially by excluding, if possible, all prison and Skid Row donors.

It is urged that state and federal control of the quality of blood used for blood transfusions be studied with the possibility that measures may be taken to increase its safety. If it is necessary that blood from prison and Skid Row donors be used to meet the demands, such blood should be labeled as carrying a significantly increased hazard of transmitting serum hepatitis in order that the physician prescribing blood may take the necessary precautions.

Garrott Allen was quick to realize that putting factor concentrates onto the market made from pooled plasma without first finding a way to virally inactivate hepatitis was a recipe for disaster for the haemophilia community.

The British government cannot claim not to have been informed regarding the dangers of US prison blood. Dr J Garrot Allen wrote to Sir William Maycock on the 6th January 1975 warning of the increased risk of hepatitis in paid and prison donors which appears to have fallen on deaf ears.

To return to the so called “treatment” taken by Longstaff, a letter from documentary maker Kelly Duda to Stephen Grime QC who acted for Longstaff in his Judicial Review, High Court case where he fought for the right to be given recombinant synthetic treatment as opposed to human plasma, highlighted that in one batch alone he had received the plasma of “297 inmates from Arkansas and an undetermined number of convicts from Avon Park, Florida.” When Longstaff was on prophylaxis, he would take factor concentrates 3 times a week with additional treatment if he bled. Investigative journalist, Mara Leveritt wrote in her Arkansas Times (August 7th, 2007) article with Grayson which highlighted Longstaff tracing back treatment batch numbers to Arkansas prison, that,

In 1992, the year after the plasma program closed, Peter Longstaff tested positive for Hepatitis C. In March of that same year, as Clinton was running for president, his former chief of staff, Betsey Wright, sent a memo titled “prison positives.” That memo, a copy of which is in Roberts’ files, mentioned four points, including, “education into prison by bc.” But the first point Wright listed was: “Run cheapest system in country.”

In 1994, Longstaff and Grayson began their campaign to expose how tainted blood had been able to make its way into their country.

On 26th July 2002, Grayson submitted the following questions under Freedom of Information to the Department of Health and Social Care (with name and address supplied) as follows:

1) Under Freedom of Information what information, leaflets, safety advice, was given to UK haemophiliacs in the 1970s and 80s that received US factor concentrates manufactured from pooled prison plasma warning them of the high risks of taking these products?

2) When importing factor concentrates manufactured from US prison plasma what consideration was given to the high level of men who have unprotected sex with men in prison (who may not necessarily self identify as “gay”) and the high number of male rapes in prisons which may not necessarily be reported but could affect plasma safety if they donated?

3) What consideration was given to the potentially high risk of AIDS in US prisons when the government decided not to take Dr Spence Galbraith’s advice to withdraw US treatment from UK shelves in May 1983 and again given the high number of men who have sex with men often unprotected and the documentation of the high number of male rapes in US prisons which could affect plasma safety, bearing in mind also that some of these rapes would go unreported?

Longstanding campaigners often hear about the “moral” arguement for compensation in the Infected Blood Inquiry hearings. However the government’s “line to take” uttered time after time by ministers and civil servants, that there was no wrongdoing, no negligence and no liability regarding the infection of haemophiliacs would be comedic if the consequences weren’t so dire and with so much damning evidence presented, is frankly indefensible.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”

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