It is with sadness that Haemophilia Action UK, long standing campaigners on Contaminated Blood learn of the death of Baroness Sue Masham of Ilton DL. However it is with great appreciation that we remember her contributions over several decades to the fight for truth, justice and safe treatment for haemophiliacs infected with HIV and hepatitis viruses in the 1970s and 1980s. Baroness Masham was vice President of the national Haemophilia Society and contributed to many debates championing the rights of the haemophilia community. She was a Crossbencher and a member of the APPG on Haemophilia and Contaminated Blood. Baroness Masham appeared on the “This Is Your Life” TV programme that highlighted how she overcame her own personal challenges, Big Red Book recalls,
Susan, who was born in Caithness and was a keen rider in her youth, took a job at a stables in Swindon following her education. A riding accident in 1958 left her confined to a wheelchair, but despite her disabilities she went on to compete in several Paralympic Games, winning medals for table tennis in 1960, 1964, and 1968.
Baroness Masham was one of the first politicians to recognize the “Special Status” of haemophiliacs in 1987, that haemophiliacs were part of a “specific patient group” living with an inherited blood clotting disorder and were already impacted in terms of their education, employment and insurance. They were then impacted again with life threatening HIV and hepatitis infections through their factor concentrates containing multiple deadly viruses. There were often several members of the same family infected. Much of the treatment was imported from the US and sourced from “high-risk” donors such as prisoners, gay men, sex workers and skid-row donors. She also drew attention to the UK failure to become self-sufficient in blood products.
Hansard 10th November 1987
Baroness Masham of Ilton
My Lords, if England and Wales had been self-sufficient in blood products, as Scotland was, would the tragedy have been as great as it now is? Will he agree that those haemophiliacs have a double tragedy in suffering not only from haemophilia but also from AIDS? Are the problems of their families not also very great?
(However evidence sourced by Carol Grayson, the author of this blog in the early 2000s and submitted to both Archer Inquiry and the Infected Blood Inquiry showed that Scotland was not entirely self-sufficuent. Scotland had also used imported US blood products at Yorke Hill Hospital, Glasgow, leading to a direct pay out from a pharmaceutical to the family of a child infected with HIV in 1980.)
In 1999, Dr Peter Jones and Dr Peter Hamilton wrote the following letter to Baroness Masham which the Newcastle Haemophilia Centre shared with campaigners as follows:-
Letter to Baroness Masham from Dr Peter Jones and Dr Peter Hamilton (14th Dec, 1999) highlighting the plight of Newcastle haemophiliacs shared with Grayson and Longstaff
In 2002, Baroness Masham drew attention to haemophiliacs being infected with hepatitis C and exposed to the blood of persons who had died from variant CJD as well as HIV. She specifically referred to Newcastle haemophilia HIV figures.
Hansard 6th February 2002
Baroness Masham of Ilton: My Lords, I also declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that in Newcastle upon Tyne 75 per cent of haemophiliacs have contracted HIV? In addition, bearing in mind the problems of CJD and hepatitis C, is it not time that haemophiliacs were given the safest possible form of clotting agents?
Lord Hunt of Kings Heath: My Lords, I do not believe that I can add to the response that I gave to the noble Lord. As I said, the advice that I have received is that as yet there is no evidence to suggest that there is an issue of safety between the different products. We understand the feelings of those in the community who are involved and affected by the tragic events that have occurred. We are obviously considering the matter.
Baroness Masham highlighted the post code lottery prescribing of Recombinant for haemophiliacs. Grayson supported her husband Peter Longstaff in his fight to challenge this which led to a case in the High Court.
Baroness Masham questioned the length of time it would take to introduce Recombinant for all haemophiliacs. Over the years treatment was rolled out by age with the youngest haemophiliacs receiving Recombinant first.
Hansard 26th February 2003
Baroness Masham of Ilton: My Lords, I declare an interest as the vice-president of the Haemophilia Society. Why are patients in Wales and Scotland receiving recombinant, which is a safer form of blood product, but not patients in England? How long will it take for all English haemophiliacs to receive it?
Lord Hunt of Kings Heath: My Lords, as I said in my Answer, we expect that the scheme will have been completely introduced by 2006. The position in Scotland and Wales is an issue relevant to the administrations there.
The number of haemophilia patients in the rest of the UK is much smaller than that in England. That is also a factor in determining the timescale for introducing the scheme completely. I can also reassure the noble Baroness that the Government will work with the Haemophilia Society to put in place a strategy to implement the scheme effectively.
A year earlier in 2008, Baroness Masham challenged the governments withdrawal of funding to charities including the Haemophilia Society. She responded to a question posed by Lord Morris of Machester,
The Question was as follows:
To ask Her Majesty’s Government what review was undertaken of the extent and depth of deprivation in the haemophilia community before the decision was taken to cut the Haemophilia Society’s core grant by 70 per cent.
Hansard 9th October 2008
Baroness Masham of Ilton
My Lords, I, too, declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that one of the society’s campaigns focuses on blood safety? Is not safety in health one of the top priorities? Does she not consider the society to be a special case? We are talking not only about people with HIV and hepatitis C, but also about people with variant CJD. They really need support and help from their society.
In 2018, she questioned the following regarding the Infected Blood Inquiry and devolved nations.
Hansard 29th January 2018
My Lords, will Scotland and England be treated the same? Will the inquiry cover all of the countries involved, including Northern Ireland, Scotland and Wales as well as England? There have been some problems in the case with which I was dealing with regard to compensation if you lived in Scotland and were contaminated in England, or vice versa.
Regarding the death of Baroness Mashan, the Northern Echo reported,
Baroness Masham of Ilton died peacefully in hospital on Sunday, the Spinal Injuries Association (SIA) said.
The charity, which was founded by Baroness Masham in 1974, said on its website: “We are extremely sad to announce that our founder and life-long president, Baroness Sue Masham of Ilton, passed away peacefully at Northallerton Hospital on Sunday 12 March.
“It goes without saying that everybody at the Spinal Injuries Association (SIA) is devastated to have lost our greatest champion.
“49 years ago, in 1974, she founded SIA and is the reason we have been able to champion, fight, serve and support thousands of spinal cord injured people ever since.
Links
Baroness Masham, Paralympian and longest-serving female peer, dies aged 87
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”.
Extract from Walford/Harley 15th Sept 1980 letter put into the public domain by Grayson and also in her awarded dissertation on Contaminated Blood (2006)/ The letter from the 1991 HIV litigation was not not shown to litigants at that time
Dear Heather,
Good to see another article in Private Eye titled Blood Feud and dated 3rd to 16th Feb 2023 and that you quoted from one of the letters I released into the public domain some years ago from the 1991 HIV litigation that was withheld from litigants and which I had returned to the Dept of Health via lawyers as they had destroyed their own copy. You will also recall it was I who revealed the 1982 Rizza and Bloom, “cheaper than chimps” letter regarding experimentation on PUPS again presented to ministers in face to face meeting in early 2000s. I also used it in our 2007 BBC Newsnight where I was the researcher where we got the late Haydn Lewis to make comment as he was under Bloom and at that time had never seen the letter.
The Diana Walford to Harley letter was in my dissertation in 2006, its titled Blood Products Laboratory Possible Take Over and dated 15th September 1980 but I obtained it in the early 2000s and also submitted it to the Infected Blood Inquiry see attached, page 17 in the Chronology, as well as the earlier Archer Inquiry and it is also quoted in my chapter 4, body of the dissertation. I featured it also in several letters to government as well as presenting it in person during meetings with ministers, early 2000s. They failed to act on it. This is why it is so important that the dates are known when campaigners FIRST highlighted evidence to government… so they can’t keep covering up.
As I said to Jenni Richards KC when I gave evidence to the Infected Blood Inquiry, the documents are like old friends to me, I know them so well. Mr Snowden KC made great use of my documents in his final oral presentation, in fact my own lawyer joked that Snowden had referenced me more than his own client Mr Jason Evans who repeatedly plagiarises my work. Jason has conned so many people since he appeared in 2016 but the Inquiry can and do of course compare to the original dates of discovery (in terms of release into the public domain).
I have no problem with you using documents I released into the public domain but it would be helpful if you could actually highlight who put them there. Successive governments have tried to get away with murder because they were able to send Sir Brian Langstaff the copies I had returned (not the originals) and as the Dept of Health lawyer destroyed the original letters of return thought they had got away with it. Fortunately I kept copies. Unlike some campaigners I have never received funding for my multi awarded research but I do like to ensure a true history of the Contaminated Blood scandal is reported. Can you imagine how many haemophiliacs have died without justice since I FIRST presented the Beecham take over letter to government, over 20 years ago, it’s appalling! Colette was with me at those meetings!
I quote from my lawyers on the very last day of the Infected Blood Inquiry as follows:-
In final written and oral submissions to the Infected Blood Inquiry, Milners solicitors and Sam Stein acting for Grayson and Wintle highlighted Grayson’s critique of the government’s so called “definitive” report and its withdrawal by government on her evidence. They also praise the work of these 2 long standing campaigners.
Oral Closing
§ “…That much was admitted in the 2007 Self-Sufficiency Report, since withdrawn as a result of the compelling critique in the dissertation of our client, Carol Grayson” [Transcript 03/02/2023 Pg53, L19-22]
§ “The incredible campaigning work of Carol Grayson and her husband Pete Longstaff, a severe haemophiliac who died of his infections, should be recognised by us all. Carol and Pete did everything possible to bring this dark passage of history to light. Ms Wintle joined with Carol and, together, their campaigning became their jobs, unfunded. The basics of life and healthcare subjugated to the campaign.” [Pg72, L3-10]
§ “Carol and Colette’s work has been foundational. Other campaigners and this Inquiry have followed in the path they worked so hard to forge. They were not the only campaigners. But, as we have heard from the evidence, from politicians, they were prolific and constant. In the history of this scandal, Carol Grayson’s name and Colette Wintle’s name should be remembered, acknowledged and honoured…” [Pg73, L2-9]
Written Closing
§ “Ms Grayson played a pivotal role in ensuring that documents were preserved and that justice was done: despite the DoH’s failings in destroying documentation, Ms Grayson and her solicitors had held on to copies of the missing documentation, and Ms Grayson notified the DoH and facilitated their return to the Department. In a letter from Ms Grayson’s solicitors, Blackett Hart and Pratt (BHP), to the Treasury Solicitor dated 7 February 2006, BHP explained that it had retained copies of documentation from the HIV litigation, and that it intended to return the documents to the DoH in case the copies held by BHP were of missing or destroyed documents. BHP sought an assurance that the documents “will be preserved pending any request for access to them by Mrs Grayson, or such other persons as may have an interest in them”.[1] As BHP explained, this letter and suggestion was instigated entirely by Ms Grayson.” [Pg169, §505]
§ “The Inquiry heard powerful and moving evidence from those who have been campaigning for three decades. Those campaigners’ lives have been consumed by their fight for truth and justice. To try to summarise their efforts in these closing submissions would do them a disservice. Instead, we ask the Inquiry to revisit our clients’ witness statements and oral testimony. The third statement of Carol Grayson[2] and the third statement of Colette Wintle[3] are essential reading and set out the extensive history of the campaign;[4] indeed their efforts were recognised by Lord Morris in the House of Lords when he spoke of them both as belonging in a “Gallery of Heroines” who had campaigned tirelessly” [Pg185, §540}
§ “One of the great successes of the campaign has been to recover and uncover a vast amount of documentation. Much of that success is attributable to Carol Grayson who, as explained earlier in these submissions, identified that Blackett Hart and Pratt may have held copies of documents destroyed by the Department of Health, and directed their return on the proviso that they would be held securely and made available for public access” [Pg189, §555]
§ “It remains unsatisfactory that there is nothing at Kew to denote the struggle to preserve the documents which now reside there. The uninitiated could easily believe that the papers relevant to the infected blood scandal were transferred as a matter of routine, rather than as the result of a decade long fight. The National Archives have thus far refused requests to add a history page to the collection, highlighting the role of Ms Grayson and certain parliamentarians in preserving the documents. Our clients consider this to be wrong: this is an important piece of history, and one which should be learnt from so that it can never be repeated” [Pg190, §558]
§ “Carol Grayson was incredulous at the report’s content and, despite being in the depths of grief over the death of her husband, she was determined to make use of her and Pete’s experiences. In Chapter 4 of her seminal dissertation,[5] Carol carefully, comprehensively, and with devastating efficacy, deconstructed the Self-Sufficiency report. Her dissertation was so effective that it ultimately lead to the report’s withdrawal” [Pg192, §562]
§ “Without Carol’s detailed research, hard work, and dogged determination, it is entirely plausible that Government might still now be placing reliance on that report, which was necessarily an incomplete account, having been prepared without the benefit of the documents returned by Carol, through Blackett Hart and Pratt…” [Pg192, §563]
Its been a difficult few years as just before the Infected Blood Inquiry began, I was threatened that I would be cancelled out of the media due to my support for Palestinians and highlighting the abuses of apartheid Israel. Some of the same people have attacked me as falsely defamed others in the Labour Party including Jews that stand up for Palestinians and of course Jeremy Corbyn, cleared of antisemitism by Forde Report.
Kind Regards
Carol
Links
Tainted blood scandal campaigners feel ‘excluded’ from Government meeting, amid fears Sue Gray exit could add to delays
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”.
Headlines from award winning Bad Blood campaign set up jointly with Carol Grayson, her husband Peter and the Newcastle Journal that utilized many of the documents Grayson discovered through her research, later falsely claimed by Jason Evans
It is interesting to note that Bell Yard Communications, London, that are named on Collins Law solicitors’ website as Press Contacts PR regarding publicity for those infected and affected by the Contaminated Blood scandal also do some joint work with legal firm Mishcon de Raya, well know to haemophiliacs who were former Macfarlane Trust registrants.
During the 1970s and 80s, thousands of UK haemophiliacs with an inherited bleeding disorder became infected with HIV and hepatitis viruses through their factor concentrate treatment. Much of this treatment was manufactured using plasma sourced from “high-risk” paid donors such as prisoners, gay men, sex workers and “skid -row” donors living on the streets.
The contacts given for Bell Yard on Collins website are Melanie Riley and Louise Beeson, see below
When Grayson, the author of this blog inquired as to why Bell Yard PR promoted Jason Evans, son of a haemophiliac who died as a result of receiving contaminated blood and a client of Collins, she was promptly blocked. Evans has repeatedly plagiarized her work and failed to reference Grayson. He has used the key documents she discovered in the late 90s/early 2000s falsely claiming to the media he discovered them from 2017 onwards.
Russell Mishcon of Mishcon de Raya acted as Trustee of the Macfarlane Trust 2006-14 and Trustee of the Eileen Trust 2007-18. The Macfarlane Trust was described as,
“a discretionary grant making Trust that was set up and is wholy funded by the Department of Health to alleviate the financial needs of those haemophiliacs infected with HIV through contaminated NHS blood products who are in need of assistance or the needy spouses, parents, children or other dependants of those infected who are living or who have died.”
Mishcon gave evidence at the Infected Blood Inquiry set up in 2018 and chaired by Sir Brian Langstaff to investigate how haemophiliacs came to be infected with blood borne viruses through their factor concentrate treatment. (The Inquiry also investigates those infected via whole blood, that are separate cases to haemophilia cases). Mishcon’s evidence can be read here,
Russell Mishcon is the son of the late Labour peer Lord Mishcon, the following gives some background, Lord Mishcon,
was elected a Labour member of Lambeth Borough Council in 1945, becoming the youngest chairman of London County Council in 1954.
While he loved local government because it involved doing things for people ‘on the ground’, he also had ambitions to be an MP, standing four times without success. However, among his many contributions to public policy was his membership of the historic Wolfenden Committee, which led to the decriminalisation of homosexuality.
In 1978, he was made a life peer – Baron Mishcon of Lambeth – by the Labour Prime Minister James Callaghan. He was the chief Labour spokesman on home affairs from 1983 to1990. For the next two years, he was shadow Lord Chancellor and sat on the House of Lords’ select committee on medical ethics. He stood down in 1992, when he was succeeded by Lord Irvine of Lairg, who went on to become Lord Chancellor when Labour won the 1997 general election.
Lord Mishcon was also deeply committed to the Jewish cause. A former president of the Association of Jewish Youth, he was vice-president of the Board of Deputies of British Jews from 1967 to 1973. He was also chairman of the Institute of Jewish Studies, University College, London, and, as a member of the Council of Christians and Jews, he worked hard at developing understanding between the two faiths.
A respected voice in Israel, he protested strongly over the Shabra and Shatila massacres in Beirut in 1982. In later years, he came to play a significant role in what became the Jordan-Israel peace treaty of 1994. King Hussein of Jordan and Shimon Peres, then Israel’s foreign minister, held several private meetings at Lord Mishcon’s country house in England. His unstinting efforts were rewarded with the Star of Jordan (First Class), presented to him by King Hussein in 1995.
Prior to the Inquiry commencing, Grayson whose husband and brother in law died as a result of receiving infected blood products (HIV, hepatitis viruses) was threatened by pro Zionists with being cancelled out of her own campaign history on Contaminated Blood and mainstream media due to her support for the human rights of Palestinians and challenging the actions of apartheid Israel.
Bell Yard posted the following in relation to working with Mishcon de Raya,
Bell Yard launches HIGA with Mishcon as legal advisers
Leading litigation law firm Mishcon de Reya LLP (“Mishcon”), has agreed to advise HIGA on the parameters of bringing a collective group action against a range of insurers. Mishcon has secured external funding to cover the policy review exercise and is working with Philip Edey QC, of Twenty Essex Chambers.
Bell Yard also advertised, Mishcon Advances Group Claim for Dental Practices, a project on which Bell Yard and Mishcon de Raya appear to be working together. See Notes to Editors Section…
NOTES TO EDITORS:
Mishcon de Reya’s Insurance team has already undertaken to advise on three separate claims relating to insurers’ refusal to honour claims under their business interruption policies – the insurers concerned are Hiscox, Aviva and QBE.
Cost: There is no cost to dental businesses to participate at this stage. If a claim is progressed and is successful, the third party funder is paid by taking an agreed deduction from any compensation secured at the end of the litigation. Most reassuringly, if the claim is unsuccessful, the litigation funder covers all legal expenses, so there is very limited financial risk to Group members.
Claim size: There is no current limit on the number of potential participants in a group claim – interested parties should simply indicate their interest to Mishcon de Reya by 19 June 2020.
Process: Mishcon de Reya will respond to each interested business seeking their formal instruction (with no obligation on fees) setting out the terms on which any litigation would proceed. All the costs of litigation are met by the funder (including all legal fees). The funder receives its remuneration by way of a percentage of the funds awarded following a successful claim.
About Bell Yard: Bell Yard Communications is advising on the creation of this litigation group. We are a boutique London-based specialist litigation and legal PR agency, founded in 2002. Bell Yard has been top ranked (Band 1) by Chambers’ Litigation Support Guide every year since the guide’s formation for our litigation PR expertise.
About Mishcon de Reya: the firm has acted on a number of group actions including but not limited to: Taxi drivers against Uber, shareholders against RBS, Royal Mail (tax litigation) and an action against Google. Mishcon is also currently advising the Hiscox Action Group and HIGA (the Hospitality Insurance Group Action).
Several years ago, Grayson wrote to Russell Mishcon in his role as trustee of the Macfarlane Trust in 2011 over inequalities in payments to widows. She was concerned that the monthly money she received as the widow of a haemophiliac was going down instead of up and she was on a much lower income than some other widows receiving state benefits. Grayson repeatedly asked the Trust for a recalculation believing she had been wrongly assessed.
She was informed that her letter had been sent to the NSSC and Mishcon was charged with writing a response, in a rather strange response which appeared to misunderstand her concerns entirely over the then alleged miscalulation of her monthly payments, he wrote,
We all felt it was an excellent letter, which argued your case eloquently and forcefully. However tghe Macfarlane Trust is not, and cannot be a compensatory body, and, therefore, cannot in isolation, take account of an individual’s losses. It is a charity bound by charity law, which means that it has to take into account financial need. Accordingly, as trustees, we have a duty to put in place policies, intended to be as fair as possible, to alleviate financial need on a current and ongoing basis, as far as the funds provided us to allow.
In 2017, there were concerns over the future of the Macfarlane Trust at that time but letters from registrants including Grayson highlighting their fears to the then CEO Jan Barlow went unanswered. In 2018, the Macfarlane Trust was wound up and the remaining monies transferred to the Terrence Higgins Trust, the UK’s leading sexual health charity in a move heavily criticised by many Macfarlane Trust registrants who feel that their voices are being “cancelled out”. Barlow will likely have had links to THT going back years when she was Chief Executive of Brook, the sexual health charity for young people and both were often quoted in the same media articles, one example as follows:-
Brown cuts VAT on contraceptives (BBC, 22nd March 2006)
Successful campaign
Jan Barlow, chief executive of Brook – the sexual health charity for young people, welcomed the announcement saying condoms and other forms of contraception are a necessity, not a luxury.
“Cutting VAT will not only benefit the people left with some extra change in their pockets, it will also help services such as Brook’s which buy contraception in bulk to give away to young people who can’t afford to pay for it.
“This move is a valuable contribution towards improving Britain’s sexual health.”
HIV/Aids charity Terrence Higgins Trust, Labour Students and The National Union of Students also welcomed the VAT reduction.
The organisations have been working together to campaign for this reduction to be made and are pleased to see the government making sexual health a priority.
‘Necessity’
Head of policy at Terrence Higgins Trust Lisa Power said: “We’re absolutely delighted that the government have seen sense and reduced VAT on condoms.
“It’s fantastic to get a positive result for this campaign which we have been working on for several years.
“If we are to reduce the ever increasing rates of HIV and sexually transmitted infections in the UK, they are a necessity.”
Government lied saying all Trust beneficiaries had been consulted on the scrapping of the Macfarlane Trust but this was not the case. Several groups of long standing campaigners some of whom had sat on the Macfarlane Joint Partnership Group were deliberately excluded from a meeting with a government appointed facilitator set up to discuss the proposed changes. A questionnaire sent out to elecit opinions of registrants of Macfarlane was not received by some of those infected and affected until AFTER the closing submission date.
Haemophiliacs have repeatedly raised concerns including with the Infected Blood Inquiry that this winding up of the Macfarlane Trust was unethical, undemocratic, and allegedly illegal. The lawyers that had acted for haemophiliacs in the late 1980s/early 1990s on the HIV litigation class action only found out about the closure from their old clients who had no one to advise them regarding the move.
Grayson recalls sitting in a Macfarlane Joint Partnership Group meeting some years ago when discussions took place to “buy out” registrants with a lump sum payment and cease monthly payments. The legal advice opposed this and registrants were reassured that monthly payments were “for life” and the Trust and payments would remain until the last infected haemophiliacs and affected partners remained alive.
Years after Grayson wrote to Mishcon, she proved that the Macfarlane Trust had made a serious error regarding her monthly payments with the help of Milners solicitors highlighting that the Macfarlane Trust had wrongly means tested the disability part of benefits. When English Infected Blood Support Scheme (EIBSS) took over regular payments to haemophiliacs and their partners, she received an apology and back pay owed to her from the time they were appointed. However, Grayson was informed by the Cabinet Office that she should contact the Terrence Higgins Trust that had taken over Macfarlane Trust monies for the back pay relating to previous years.
So far THT have denied responsibility and failed to help her receive the money owed. Grayson suffered great distress and financial difficulty during the years of under payment and was forced into debt due to the under payment. THT have ironically managed to find money to fund her plagiarist Jason Evans to carry out research but not for Grayson’s back money. They refuse to answer as to how much Evans and his group Factor 8 are being funded and what research he is carrying out despite letters sent to THT from the national Haemophilia Society and several former beneficiaries of the Macfarlane Trust now registered with THT. Grayson’s own letters and most of her written questions have gone unanswered.
She is now blocked from contacting THT after questioning the appointment of Evans who set up FAactor 8 Group and the Tender process and whether there was a diverse representation of persons that applied alongside Evans to carry out research or whether only one candidate (who claims he is from a Jewish background on his video) was targeted and considered? Was the funding also EQUALLY opened up to others from Christian, Muslim, Sikh, Hindu, Buddhist backgrounds too for example. Was it open to women and persons with disabilities and those actually infected with HIV? There is reason to believe only one person was considered, Jason Evans my plagiarist, but that will be made public shortly.
It is noted that Mishcon de Raya acted for litigants in the following case,
Lecturers threaten to sue union over Israel boycott
UCU members demand repayment of their funds used in call to sever links with Israeli academics
Back to Bell Yard, it is difficult to understand why this company would want to associate with a plagiarist who gives false Timelines of discovery to the media and fails to reference Grayson who discovered, saved and provided many key and incriminating documents to the Infected Blood Inquiry in addition to writing a dissertation on Contaminated Blood in 2006 for which she received the ESRC Michael Young Prize. Grayson was granted separate legal representation to the four original firms of solicitors by Sir Brian Langstaff due to a “conflict of interest” in relation to plagiarism of her work. Milners were appointed to the Inquiry to act for her and her campaign colleague Colette Wintle to act for them on the special status of haemophiliacs and with regard to plagiarism of Grayson’s research. She was also given a special arrangement with the Inquiry to directly submitted her scanned evidence to investigators and was informed she had the largest team assigned to her due to the amount of documents accumulated.
In final written and oral submissions to the Infected Blood Inquiry, Milners solicitors and Sam Stein acting for Grayson and Wintle highlighted Grayson’s critique of the government’s so called “definitive” report and its withdrawal by government on her evidence. They also praise the work of these 2 long standing campaigners.
Oral Closing
“…That much was admitted in the 2007 Self-Sufficiency Report, since withdrawn as a result of the compelling critique in the dissertation of our client, Carol Grayson” [Transcript 03/02/2023 Pg53, L19-22]
“The incredible campaigning work of Carol Grayson and her husband Pete Longstaff, a severe haemophiliac who died of his infections, should be recognised by us all. Carol and Pete did everything possible to bring this dark passage of history to light. Ms Wintle joined with Carol and, together, their campaigning became their jobs, unfunded. The basics of life and healthcare subjugated to the campaign.” [Pg72, L3-10]
“Carol and Colette’s work has been foundational. Other campaigners and this Inquiry have followed in the path they worked so hard to forge. They were not the only campaigners. But, as we have heard from the evidence, from politicians, they were prolific and constant. In the history of this scandal, Carol Grayson’s name and Colette Wintle’s name should be remembered, acknowledged and honoured…” [Pg73, L2-9]
Written Closing
“Ms Grayson played a pivotal role in ensuring that documents were preserved and that justice was done: despite the DoH’s failings in destroying documentation, Ms Grayson and her solicitors had held on to copies of the missing documentation, and Ms Grayson notified the DoH and facilitated their return to the Department. In a letter from Ms Grayson’s solicitors, Blackett Hart and Pratt (BHP), to the Treasury Solicitor dated 7 February 2006, BHP explained that it had retained copies of documentation from the HIV litigation, and that it intended to return the documents to the DoH in case the copies held by BHP were of missing or destroyed documents. BHP sought an assurance that the documents “will be preserved pending any request for access to them by Mrs Grayson, or such other persons as may have an interest in them”.[1] As BHP explained, this letter and suggestion was instigated entirely by Ms Grayson.”[Pg169, §505]
“The Inquiry heard powerful and moving evidence from those who have been campaigning for three decades. Those campaigners’ lives have been consumed by their fight for truth and justice. To try to summarise their efforts in these closing submissions would do them a disservice. Instead, we ask the Inquiry to revisit our clients’ witness statements and oral testimony. The third statement of Carol Grayson[2] and the third statement of Colette Wintle[3] are essential reading and set out the extensive history of the campaign;[4] indeed their efforts were recognised by Lord Morris in the House of Lords when he spoke of them both as belonging in a “Gallery of Heroines” who had campaigned tirelessly” [Pg185, §540}
“One of the great successes of the campaign has been to recover and uncover a vast amount of documentation. Much of that success is attributable to Carol Grayson who, as explained earlier in these submissions, identified that Blackett Hart and Pratt may have held copies of documents destroyed by the Department of Health, and directed their return on the proviso that they would be held securely and made available for public access” [Pg189, §555]
“It remains unsatisfactory that there is nothing at Kew to denote the struggle to preserve the documents which now reside there. The uninitiated could easily believe that the papers relevant to the infected blood scandal were transferred as a matter of routine, rather than as the result of a decade long fight. The National Archives have thus far refused requests to add a history page to the collection, highlighting the role of Ms Grayson and certain parliamentarians in preserving the documents. Our clients consider this to be wrong: this is an important piece of history, and one which should be learnt from so that it can never be repeated” [Pg190, §558]
“Carol Grayson was incredulous at the report’s content and, despite being in the depths of grief over the death of her husband, she was determined to make use of her and Pete’s experiences. In Chapter 4 of her seminal dissertation,[5] Carol carefully, comprehensively, and with devastating efficacy, deconstructed the Self-Sufficiency report. Her dissertation was so effective that it ultimately lead to the report’s withdrawal” [Pg192, §562]
“Without Carol’s detailed research, hard work, and dogged determination, it is entirely plausible that Government might still now be placing reliance on that report, which was necessarily an incomplete account, having been prepared without the benefit of the documents returned by Carol, through Blackett Hart and Pratt…” [Pg192, §563]
Blood scandal campaigners are ‘right to be angry’ says top barrister warning wrongdoing medics should face criminal courts
Sam Stein KC hit out at the Government and doctors who treated patients without their consent in a moving closing address to the Infected Blood Inquiry.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”
Grayson (left) and Wintle (right) saved and protected the Archer Inquiry website for future generations, key research evidence submitted by Grayson to Lord Archer has since been extensively used by both the Penrose Inquiry and the Infected Blood Inquiry
(Image via Colette Wintle)
Kate Burt
Chief Executive Officer
The Haemophilia Society
52b Borough High Street
London
SE1 1XN
Reference Transfer of Archer Website
25th February 2023
Dear Kate,
I am writing to you in an official capacity as co- owner of the Archer website domain which has been held in joint ownership between fellow campaigner Carol Grayson and I, Colette Wintle, since February 2017. The website domain was officially transferred to us from Slater Gordon solicitors following a period of two years of searching for the Archer Report which had been offline and unavailable for several years. On the 15th February 2017, Barrie Anderson wrote informing us that their firm would no longer be hosting the site and with regard to the forthcoming transfer, stating, “my intention is to make you aware as I feel between yourselves the domain name should be in the ownership of those who have been involved in this inquiry”.
The report and testimonies are an important part of the Haemophilia community’s history and is deserving of protection for future generations of persons with bleeding disorders so they can learn from what Lord Winston referred to as “the worst medical treatment disaster in the history of the NHS”.
The Archer public inquiry was fought for through the work of long- standing campaigners such as Carol and myself and others who worked with Lord Alf Morris and other cross party MP’s over decades. It was the first ever privately funded public inquiry since the advent of the Contaminated Blood scandal which left 4,800 haemophiliacs, men women and children stricken by Hepatitis and HIV viruses. Sadly, many of the people who were core participants in the Archer inquiry have died from their infections and never saw justice in their fight for the truth as to who was responsible for this NHS treatment scandal. Lord Morris and Lord Peter Archer both sadly died only a few short years after the report was published and we must never forget their support and efforts to hold government and other bodies to account.
Carol and I have agreed that the time is now right following the final presentation day of witnesses to the Infected Blood Inquiry, to hand over the stewardship of the Archer Website Domain to the Haemophilia Society with the express wish that the Haemophilia Society commits (in writing to us) to protect the website for its members and future generations. It will serve as a reminder of our commitment to our community whom we fought for so determinedly for three decades despite our own suffering from ill health and personal losses.
A few years ago, Haemophilia Scotland requested under Dan Farthing Sykes ex CEO of the Scottish Society to place a copy of the report and testimonies on their website which we gave them permission to do providing they referenced its ownership to Carol and myself. Unfortunately, others such as Factor 8 Group have not been so respectful and placed the contents of the Archer website on their site minus any reference to our work to preserve the site. We state emphatically that the reason lawyers transferred the site to us in the first place was because of the recognition of our extensive involvement in the Archer Inquiry, Carol gave evidence both as a the widow of haemophilia Peter Longstaff and again as a researcher on Contaminated Blood (later awarded for her work) and I gave testimony as an infected female haemophiliac at a time when female haemophiliacs were not even officially recognised due to a misogynist approach to treatment.
As the CEO of the Haemophilia Society, you may wish to write to the new CEO of the Terrence Higgins Trust and inform them that the Haemophilia Society will now be hosting the Archer Report. We would like you to ensure that the background history of how this report disappeared and was then recovered by us is understood by your members and other organizations with an interest in bleeding disorders and Contaminated Blood because it was lost to the haemophilia community until we tracked it down!
I have already sent you the access details to the website and I understand you have acted upon the transfer. We would like to thank you for agreeing to take over the care of this important report as it was and remains a vital part of our lengthy campaigning years. We ask finally that you place this letter on the Haemophilia Society website for members to read to ensure they are informed of the transfer.
Yours Sincerely
Colette Wintle and Carol Grayson
Links
Report on the Archer Inquiry, Blood Scandal Report, Channel 4, 16th March, 2009 (Youtube, Lekozza)
Whitehall accused of cover-up over infected blood imports (Telegraph, 26th May 2007, Hardcopy Archived)
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”
Grayson with her late husband Peter Longstaff early 2000s. Peter died in 2005 as a result of being given Contaminated Blood
Yesterday Friday 3rd February 2023 marked the final day of oral submisions to the Infected Blood Inquiry, set up in 2018 by Sir Brian Langstaff to investigate how haemophiliacs with an inherited clotting disorder came to be infected with HIV and hepatitis viruses as a result of their factor concentrate treatment made from pooled plasma. (Whole blood victims are also included in the Inquiry but they have an entirely separate case to haemophiliacs.) Much of the plasma was collected in the US from “high -risk” sources such as prisons, skid -row donors, drug addicts, gay men and sex workers. Other plasma came from Central America countries where the poor sold their blood for a few dollars.
The following was a short guide written by this author Carol Grayson (Haemophilia Action UK) on the 21st January 2003 and was an overview of some key points and themes within our then campaign which began in 1994 to raise awareness of hepatitis C infection in haemophiliacs, many were also infected with HIV and before that hepatitis B. It was sent to journalists, government officials, MPs and lawyers to draw awareness to a BBC programme Face The Facts which had gone out on the 3rd August 2002. Grayson’s address and other personal details have been removed.
Much of the evidence now being used by the Infected Blood Inquiry was discovered, saved and utilized by Grayson and her late husband Peter Longstaff from the 1990s. They devised the key themes surrounding the Contaminated Blood scandal which would need to be examined should an inquiry ever materialize. These themes were then ignored and rejected by government for decades. The Newcastle Chronicle reported, that Mr Stein KC for Grayson,
paid tribute to the work of campaigners like Carol and colleagues such as Colette Wintle, Mark Ward and the late Peter Mossman – whose funeral was a year to the day before the inquiry’s final hearings. He said without them, the Inquiry itself would never have happened. Later in the day Inquiry counsel Jenni Richards KC repeated this.
Stein added,
Carol’s campaigning work over decades “had foreshadowed so much of what this inquiry has been considering”.
The Chronicle also stated,
Speaking on the last day of evidence at the Inquiry, Carol told ChronicleLive: “What I was saying back then [decades ago] is the same evidence that has been used over the Inquiry. I had that evidence and no-one was listening.”
21/01/2003
HAEMOPHILIA ACTION UK
HEPATITIS C HISTORICAL OVERVIEW (UPDATE) (Copyright) – Carol Grayson
Campaign Co-ordinator- Carol Grayson
INTRODUCTION
On 3rd August 2002 at 12 .30 lunchtime Radio 4 broadcast “Face The Facts” which looked at the case of haemophiliacs infected with multiple viruses, hepatitis C, hepatitis B, HIV, and recently exposed to v CJD through NHS blood products. It discussed what is termed in the House Of Commons and Lords as “the worst medical treatment disaster in the history of the NHS” and the failure of the Government to hold a public inquiry despite overwhelming evidence that much of this contamination could have been prevented. Unfortunately the press generally and indeed many professionals have failed to understand the background to this issue and have tended to portray the contamination of haemophiliacs as an “unavoidable accident” which is highly distressing to the haemophilia community. The haemophilia community maintain that if the Government and professionals had read the literature/research available and heeded the warnings with regard to hepatitis B infection and plasma collection from the 1960s onwards it would ultimately have saved many lives with regard to the then unknown viruses of hepatitis C and HIV which emerged in the 1970s. We hoped that the Radio 4 program and the accompanying information would raise awareness and finally challenge this myth.
The research below was done by myself. I accessed all the medical journals and books used as reference material at Newcastle University Medical Library, so health care professionals cannot claim ignorance with regard to the warnings about using imported plasma and the dangers of hepatitis viruses. The information was on their doorstep. The evidence presented is only a fraction of what is available.
I am not a doctor, I have a nursing and library background and have the following qualifications RMN, ENB 612, 730 CERT. I have considerable experience working with HIV/hepatitis from the mid- 1980s both in this country and in an advisory capacity in Russia (1987). I remain on the nursing register and keep myself up-to –date although I am no longer working. I am now a full-time carer to my haemophiliac partner who is infected with HIV, hepatitis B and C and has recently been exposed to v CJD, his brother also an infected haemophiliac died of AIDS in 1986.
HISTORICAL EVIDENCE OF INFORMATION KNOWN WITH REGARD TO HEPATITIS RISKS FROM PLASMA.
HEPATITIS
The risk of transmitting hepatitis through the use of large-pool plasma was recognized as long ago as 1945. During the Korean War soldiers were treat with pooled plasma in field hospitals and the spread of hepatitis through using pooled plasma was observed.
1970. The book “The Gift Relationship” by Richard Titmuss was first published by Allen And Unwin. The book directly compared our blood transfusion service to that of the United States. The U. S. fell far short of the recommended safety requirements for the collection of blood. The book contained many references to research on the subject of paid donors and strong testimony on the failures of the American system by experts in hepatitis. It was frequently quoted in the field of haematology.
WHY THEN DID BRITAIN DECIDE TO LICENCE THE IMPORT OF PLASMA CONCENTRATES FROM THE U. S. IN 1973 IGNORING THESE WARNINGS? THERE WAS NO SHORTAGE OF OUR OWN BLOOD DONORS, HOWEVER THERE WAS AT THIS TIME A LACK OF INVESTMENT FROM THE GOVERNMENT IN BPL, WHICH LED TO THE RUNDOWN OF SERVICES AND LIMITED PRODUCTION OF CLOTTING FACTORS.
THIS IS THE REASON WHY OUR GOVERNMENT BOUGHT PLASMA FROM AMERICAN BLOOD COMPANIES, TAKEN FROM LARGE DONOR POOLS AND MARKETED BEFORE MONEY WAS PUT INTO RESEARCH TO ELIMINATE THE HEPATITIS VIRUSES WHICH WAS ESSENTIAL TO SAFETY.
WHO WAS ON THE PRODUCT LICENSING COMMITTEE AND BLOOD SAFETY COMMITTEES IN 1973 THAT LICENSED THE IMPORTATION OF PLASMA PRODUCTS?
The Titmuss book was read and referred to by Dr David Owen, Health Minister in 1974. It was after reading this that he decided to opt for self-sufficiency in blood products stating so in 1974/1975 on SAFETY grounds. Owen made a parliamentary commitment for this country to be self-sufficient by 1977 and put money aside for this purpose. (Documented in Hansard).
WHY DID THIS NEVER HAPPEN?
WHY ARE WE CONTINUALLY DENIED A PUBLIC INQUIRY?
WHY WERE HIS LETTERS (1987/88) TO THE PARLIAMENTARY OMBUDSMAN IN WHICH HE CALLED FOR AN INVESTIGATION INTO WHAT HE DESCRIBED AS “GROSS MALADMINISTRATION” IGNORED? (I HOLD COPIES OF DR OWEN’S LETTERS).
WHY HAVE HIS PAPERS, WHICH SHOULD HAVE BEEN KEPT UNDER THE 30YEAR RULE BEEN PULPED?
LORD OWEN HAS RECENTLY CALLED AGAIN FOR AN INVESTIGATION (2002), AFTER I CONTACTED HIM TO SPEAK OUT ONCE MORE. HE WROTE TO THE CURRENT HEALTH OMBUDSMAN, SIR MICHAEL BUCKLEY AND HAS AGAIN BEEN TURNED DOWN.
WHAT WAS ALREADY KNOWN ABOUT HEPATITIS RISKS FROM UNSAFE DONOR SOURCING PRIOR TO THE PUBLICATION OF “THE GIFT RELATIONSHIP” IN 1971?
1966. Dr J Garrott Allen of the Stanford University School Of Medicine published and presented the following to the American Surgical Association.
“Blood from some groups among donor populations produces more cases of icteric hepatitis than blood from other groups. The incidence of icteric serum hepatitis in patients receiving single transfusions when the donors are of the prison-skid-row type, is ten times that of volunteer donors, family and friends. This alarming difference also obtains for multiple transfusions from prison donors, and this has been confirmed by others.”
“ The paid donor is often a cloistered resident of Skid-row where he and his colleagues enjoy frequently the practice of the communal use of unsterile needles and syringes for the self-administration of drugs…. There are also other unsanitary practises that prevail among this kind of population which favour repeated exposures to infectious hepatitis as well. Still another contributing factor, higher in this group than in the general population is that of alcoholism, which appears to make such individuals more susceptible to an initial infectious or serum hepatitis.”
“authorities have drawn attention to the fact that the purchase of blood attracts many alcoholics and other unfortunates who return to blood banks and who know they will be deprived of money if they answer to questions about jaundice, malaria, other infectious diseases and hypersensitivity. Narcotic takers are known to be frequent blood donors.”
“These paid donors have been variously described in many other papers as narcotics, dope addicts, liars, degenerates, unemployed derelicts, prison narcotic users, bums, the faceless, the undernourished and unwashed, junkies, hustlers and “ooze-for booze donors.” Many are said to give fictitious names and addresses (which make it difficult to trace cases of hepatitis, malaria and venereal disease): to sell their blood to different blood banks, and to traffic in black markets of social security cards, “rented” for 25 cents or so to serve as identity cards at blood banks.”
1966 PLASMAPHERESIS CONFERENCE among health risks to donors highlighted were the following.
The danger of iron-deficiency anaemia developing.
Local venous thrombosis at the site of repeated venipunctures.
Donors receiving back the wrong red cells.
Inadequate techniques for assessing haemoglobin levels: bacterial proliferation and contamination and other hazards to health particularly in the long run.
It was agreed that skid-row type of donors SHOULD NOT be used.
“One of the most important ethical implications is exploiting for its proteins a population which is lease able to donate them- the poorly nourished skid-row donors.”
“In many states, however, blood obtained from prisons is used for commercial purposes. The first plasmapheresis program started by Cutter Laboratories, a pharmaceutical firm of Berkeley, California began in a prison setting. In Georgia, in 1966-7, a local hospital seeking blood and a pharmaceutical firm were “clashing head-on” for the rights to obtain blood from prisoners in the Reidsville State Prison. By 1968 “bids” or tenders were being made in various areas by pharmaceutical firms operating plasmapheresesis methods and other commercial interests for monopoly rights over prison blood.
In terms of ethical principles, therefore, there is a fundamental difference in the official policies adopted in regard to prison donors in the United States and England.”
1966. Gastroenterology 50. “Hepatitis among Prison Inmate Plasmapheresis Donors in Three State Prisons” Ronald F. Johnson (Communicable Disease Center, Public Health Services, United States Department of Health, Education and Welfare, Atlanta, Ga.) showed the hepatitis risk of using prison plasma donors. The risk of hepatitis from prisoners was far higher than in the general population of America. The general population of America in turn carried a far higher hepatitis risk than the general population of the UK. (American prisons were a common source of donors for plasmapheresis to make plasma products for haemophiliacs. In the UK collection of blood from within a prison population was banned on the grounds of safety.)
1968. Journal American Medical Association Feb 1968 “Transfusion Hepatitis Arising From Addict Blood Donors” by Stephen N. Cohen MD, AND William J. Dougherty, MD, warns of hepatitis risk from using addict donors at U.S. blood banks.
1968. British Medical Journal 20th April “The Price of Blood” by Arie Zuckerman warns against using imported plasma from paid donors on safety grounds.
EVIDENCE FOLLOWING ON FROM THE PUBLICATION OF THE GIFT RELATIONSHIP IN 1971.
1972. Serum Hepatitis and The Paid Blood Donor by Martel J Dailey, MD Williamston, NC. This article there is a clear link between paid blood donors and a greatly increased risk of hepatitis.
1972. Journal American Medical Association 31ST July 1972 “Hepatitis and Clotting Factor Concentrates” Carol K. Kasper, MD, Shelley An Kipnes, University of California. Los Angeles. This article documents concerns over increased risk of hepatitis infection in U.S. haemophiliacs observed after haemophiliacs began using the new treatment, clotting factor concentrates. *(Please note this article was written BEFORE UK haemophiliacs began taking factor concentrates made from large plasma pools (20,000 donors), at this time UK haemophiliacs were using cryoprecipitate from a small number of donors up to 10 donors.)
1975 DR J GARROTT ALLEN LETTER PLUS 1975 WORLD IN ACTION DOCUMENTARY “Blood Money”
The “World In Action” documentary team including hepatitis expert Dr Arie Zuckerman visited around 10 plasmapheresis centres in run-down areas run by a plasma company Baxter/Hyland, and showed evidence of inappropriate donors and failing safety standards. Plasma treatments used by Newcastle haemophiliacs were traced to the source, the U. S. plasma collection centres. (Plasma from this company was used all over the UK as well as Newcastle). The documentary team interviewed American hepatitis experts, they state that “THE ESTIMATED HEPATITIS INFECTION RATE FROM IMPORTED AMERICAN FACTOR CONCENTRATES IS 100%”. THEY SHOWED A MAP OF THIRD WORLD COUNTRIES WHERE PLASMA WAS ALSO SOURCED.
ZUCKERMAN VISITED THE HYLAND FACILITY IN LOS ANGELES AND DESCRIBED IT AS “AN OFFENSE TO HUMAN DIGNITY”, WITH DONORS WHOM ANY BRITISH PHYSICIAN WOULD HAVE “REJECTED STRAIGHTAWAY.”
Peter Longstaff my partner (a severe haemophiliac) returned his treatment in protest after watching this documentary which featured Newcastle haemophiliacs in 1975 and was reassured by his Consultant Haematologist, Dr Peter Jones, that the Newcastle Haemophilia Centre was not using plasma from such sources. We obtained old treatment records for Peter back to mid 1970s and he WAS getting these products, as were others throughout the country and the safety concerns documented were only the tip of the iceberg. The huge level of risk from the imported products was never discussed with patients, haemophiliacs were unable to make an informed choice on taking this treatment nor were they given the chance to remain on the older safer treatment, cryoprecipitate.
(WHAT ABOUT PATIENTS INFORMED CONSENT AND THE HUMAN RIGHTS OF PATIENTS TO REFUSE TREATMENT IF THEY SO WISH?) Dr Jones the same consultant who reassured haemophiliacs in 1975 went on the record in a medical journal 5 years later his own concerns over the sourcing of plasma but PATIENTS WERE STILL NOT TOLD OF HEPATITIS RISKS AND THERE WAS STILL NO WITHDRAWAL OF IMPORTED TREATMENT.
Dr. Peter Jones gave evidence at the Lindsay Tribunal (Eire’s public inquiry into the contamination of blood products) last year stating that blood companies lied over safety of products! That may be the case but it is noted that doctors appear to be doing their own “damage limitation” now having ignored all the evidence with regard to imported plasma written in medical journals from the 1960s. Haematologists have consistently failed to support their patients in a call for a public inquiry. We also note the generous funding given to medical professionals, nurses, the national Haemophilia Society etc over the years from the U. S. plasma companies. This funding continues to-day!
Doctors, politicians, plasma companies etc, have continued the myth that “the benefits of the treatment outweighed the risks”. I argued against this in a letter to Government entitled, “The risks of the treatment outweighed the benefits.” (Contact for a copy). This argument “the benefits of the treatment outweighed the risks” was thrown out when used by plasma companies as a defence in litigation cases in the U. S. It was also thrown out in Canada where criminal charges against doctors, a plasma company and the Canadian Red Cross have been made in relation to contamination of haemophiliacs.
Dr Garrott Allen (American specialist in hepatitis viruses) writes to William Maycock, Head of our Blood Transfusion Service and advises Britain NOT to import U S plasma. (1975). IGNORED BY OUR GOVERNMENT! Statements from this letter was featured on the 1975 “World In Action” documentary entitled “Blood Money.
Dr Garrott Allen stated.
“Commercial blood banking perpetuates the high-risk rates for hepatitis we encounter with their products and it also tempts these same commercial firms to sell residual products.”
“It does not take much commercial blood in a mixed combination to bring up an astounding attack rate from one that is relatively unnoticed, this is the basis of my concern about Britain purchasing commercial blood products from our country.”
WORLD HEALTH ORGANISATION 1975
The activities of commercial firms obtaining blood or plasma from paid donors in developing countries, in order to produce blood derivatives, have given rise to serious health hazards and ethical problems. These were discussed by the Twenty-eighth World Health Assembly, which, after consideration of a report on the utilization and supply of human blood products, adopted resolution WHA28.72 recommending certain courses of action. In December WHO and the League Of Red Cross Societies jointly convened a consultation of experts to discuss the implementation of this resolution. Guidelines for the protection of health of recipients and donors were established, and preparations were made for international collaborative research on health hazards of plasmapheresis. In the field of blood transfusion, training remains the greatest need.
GUIDELINES
The Collection, Fractionation, Quality Control, And Uses Of Blood And Blood Products: Guidelines 1975.
“Donor populations showing a prevalence of acute or chronic hepatitis higher than that found in the general population should be avoided for collection both of single donor products (whole blood and its components and of plasma for pooling for the manufacture of plasma fractions known to be capable of transmitting hepatitis, such as clotting factor concentrates.)
Countries with a low incidence of hepatitis should NOT use whole blood or blood products obtained from source material collected from an area, in which there is a high incidence of hepatitis.”
*PLEASE NOTE THIS WAS THE SITUATION WITH REGARD TO BRITAIN IMPORTING FROM THE U.S. IN 1973. THE UK HAD A MUCH LOWER INCIDENCE OF HEPATITIS THAN THE U.S.
WHY DID THE GOVERNMENT TAKE SUCH RISKS WITH THE LIVES OF HAEMOPHILIACS BY USING IMPORTED PLASMA?
WHY DID BRITAIN START IMPORTING TREATMENT FROM THE U.S. USING COMPANIES THAT SOURCED PLASMA FROM SKID-ROW AND PRISONS SUCH AS LOUISIANA STATE PENITENTIARY, ARIZONA AND ARKANSAS PRISONS ETC AND EXPLOITED THE SICK AND POOR FROM THIRD WORD COUNTRIES? THIS WAS WELL DOCUMENTED AND DEBATED IN MEDICAL JOURNALS AT THE TIME.
EVIDENCE OF HEPATITIS RISK RESEARCH ON HEPATITIS B AND NANB FROM 1970S ONWARDS.
SEE FOLLOWING.
1970
First evidence of non – A, non –B hepatitis (NANB).
PRIOR TO 1973 cryoprecipitate used to treat haemophiliacs, made from small numbers (pools of 10 donors, these donors are volunteer, unpaid, local donors.) Incidence of hepatitis in general population very low according to National Blood Transfusion Service.
1973
Factor VIII licensed for import. (HOW COULD THIS TREATMENT HAVE BEEN LICENSED ON SAFETY GROUNDS?) Concerns raised in the UK (“Times” and medical journals) over post transfusion hepatitis non-A, non –B, and infection risk in U. S. patients.
Times Nov 12th 1974. “The existence of at least one other strain has been apparent during the past six or seven years because research has shown that a large number of patients, particularly those infected from transfusions or injection, were not carrying the hepatitis-A or B strains. In the United States up to 90% of transfusion-associated illness is caused by this third non-A, non-B agent”.
(Please note at that time the UK had a very low incidence of hepatitis viruses in our general population compared to the U. S. This fact DID NOT stop the Government exposing haemophiliacs to a far greater risk of hepatitis viruses by importing U.S. plasma collected FROM HIGH-RISK SOURCES.)
1975
Outbreaks of hepatitis directly linked to imported factor concentrates. (Studies by Dr Craske on haemophiliacs published in British medical journals in 1975 and 1978.) Warning bells did sound with some doctors but importation continued!
Not long after this UK Haemophilia Centre Directors issue guidelines recommending children are now treat with the older safer treatment-cryoprecipitate because of risk of viral contamination, adults not given this choice.
WHY WOULD HAEMATOLOGISTS ISSUE SUCH GUIDELINES FOR CHILDREN IF THE FACTOR CONCENTRATES WERE SAFE?
WHAT ABOUT SAFETY FOR ADULTS?
LATE 1970s
Professor Preston et al Sheffield start their 8 year study on haemophiliacs looking at liver disease. Government ask the UK Haemophilia Directors Association to monitor levels of hepatitis B, and non-A, non-B and keep information on “suspect” batch numbers. (Patients not warned of this). The Government funded a 3 year study on hepatitis in haemophilia patients. It was noted that the U. S. products carried the highest risk of hepatitis viruses and specific companies such as Baxter /Hyland were named.
1981
BOOK –NON-A, NON-B HEPATITIS BY R J GERETY. PUB. 1981. Chapters looked at donor type and source plasma to level of infectivity with hepatitis viruses e.g. source plasma from prisons hepatitis infection rate could up to 70 times higher then general population. Specific chapters on haemophiliacs. Looks at symptoms for acute and chronic NANB hepatitis, levels of liver disease, cirhhosis etc.
1980s
Warnings come from the U. S. about haemophiliacs dying from immune problems, this escalates and further concerns are raised over plasma safety.
1982
The consensus of opinion from experts at the Centre For Disease Control, Atlanta was that AIDS was blood borne. (Dr. Doug Francis, CDC.) U. S. plasma companies warned of this and to stop using high-risk donors, of particular concern with regard to transfusion risk, these include prison donors and donors from the gay community. Many warnings ignored by the plasma companies.
1983 Dr Galbraith of the Public Health Laboratory Service (PHLS) writes to Government to call for an urgent withdrawal of all U. S. blood products manufactured in the U. S. after 1978 because of the risk of AIDS in blood products. Dr Galbraith lays out his reasons why there should be a withdrawal stating that he has contacted both the U. S. and Madrid where there are cases of AIDS symptomatic haemophiliacs and the common factor is the U. S. factor concentrates.
First reports of AIDS in a UK haemophiliac, (Cardiff). PHLS complains that this and a further case were not reported by haematologists to the PHLS and that they only found out through the *“Mail on Sunday”.
*Pioneering journalist Susan Douglas writes strong article about risk to haemophiliacs from new virus believed to be blood borne –AIDS. Haematologist, Dr Peter Jones takes action with Press Association complaining about article. Incredibly he wins on grounds that article is alarmist and AIDS is not blood borne. This has the effect of shutting up some of the press and for a while this virus is not taken seriously by Government, medical establishment etc.
1983/84
Some doctors call for a ban on imported American plasma -IGNORED. In fact incredibly our national Haemophilia Society goes to the Health Department and asks for a guarantee that imported products continue!!!! (Society minutes 1984.)
Mail On Sunday fires back with article about the medical profession with a direct attack on (Dr Jones) describing the situation with the medical establishment as a “conspiracy of silence”. Haemophiliacs are not at that stage advised of any HIV risk to themselves but told to keep on taking U. S. plasma and to ignore “alarmist” press articles! First HIV deaths occur in UK haemophiliacs.
1985
Haemophiliacs tested for HIV virus, (often without their knowledge or permission). 1263 eventually test positive nationally. According to staff at Newcastle Haemophilia Centre 95 haemophiliacs out of 105 tested come up positive for HIV. (78 NOW DEAD, ONE OF HIGHEST INFECTION AND DEATH RATES IN UK.)
1985
Also the year heat-treatment is introduced here, some hospitals INCLUDING Newcastle, RVI, insist old untreated products are used up first further exposing haemophiliacs to viral contamination. Some companies heat-treat at wrong temperature so products are unsafe.
1985
Professor Preston publishes his 8 year study on haemophiliacs in the “Lancet” called “Liver Disease In Haemophiliacs, An underestimated Problem.” The study concludes that much of the liver disease is probably as a result of haemophiliacs being infected with non-A, non- B (NANB) hepatitis. Diagnosis of NANB hepatitis by now quite common. There is a process of elimination, testing for hepatitis A and B excluding these viruses and looking at raised liver function tests etc which is documented in medical journals. Preston’s study also predicts more problems in the future with regard to liver disease in haemophiliacs and the hope of a safe synthetic alternative treatment within a few years. At around this time we now know from patient’s medical records that some UK haemophiliacs were being given a diagnosis of being infected with NANB hepatitis although this was never discussed with them at that time.
Professor Preston has recently given evidence on hepatitis to the Lindsay Tribunal (Eire)
MANY PAPERS PUBLISHED ON NANB HEPATITIS AND EFFECTS OF INFECTION PUBLISHED ON A REGULAR BASIS FROM THE 1970S TO PRESENT DAY DOCUMENTING HEPATITIS NANB (HEP C) AS A DEADLY VIRUS.
IN THE HIV LITIGATION MANY OF THESE PAPERS ON HEPATITIS WERE COLLECTED, HEPATITIS GENERALLY CONSIDERED A SERIOUS PROBLEM FROM THE END OF THE 1970S. THE BASIS OF THE HIV LITIGATION WAS ALLEGED NEGLIGENCE WITH REGARD TO HEPATITIS B, FAILING TO TAKE SAFETY PRECAUTIONS WHICH WOULD HAVE MINIMISED RISK AND ALSO WOULD HAVE DRASTICALLY REDUCED EXPOSURE TO AIDS AND HEPATITIS C. IF PRECAUTIONS HAD BEEN TAKEN WITH REGARD TO THE DANGERS OF HEPATITIS B AND BLOOD NOT IMPORTED (1973) AS ADVISED BY AMERICAN SPECIALISTS AS WELL AS UK SPECIALISTS MUCH OF THE VIRAL INFECTION WITH HIV AND HEPATITIS C WOULD HAVE BEEN PREVENTED!
1986
Stephen Longstaff, a haemophiliac and brother of my partner Peter Longstaff dies of AIDS.
1989
Hepatitis NANB becomes officially known as hepatitis C after virus is isolated.
TESTING FOR HCV
Government won’t use first generation hepatitis C test in 1989 as they say too many false positives. Other European countries erred on the side of caution and tested whole blood thereby saving many patients from hepatitis C infection. Many haemophiliacs secretly tested with first generation test from 1989 and then again with a second generation test in 1991/1992 but many not told of results until 1994 or much later. This testing was against GMC guidelines and a matter, which doctors may have to explain in court. We now know from medical records that testing without patient’s permission occurred all over the UK.
HIV LITIGATION
Government try to claim PUBLIC INTEREST IMMUNITY, this is overturned by solicitors who get permission to view Government blood files. Suddenly after years of fighting, haemophiliacs hear that Government have announced an ex-gratia payment but accepts no liability. The solicitors agree and the files are sealed for 30 years. Government want to means test settlement but solicitors disagree. Government says that if all haemophiliacs sign a “hepatitis undertaking” known by haemophiliacs as the “waiver” they will not means test the settlement.
1991
HEPATITIS WAIVER
HIV settlement-haemophiliacs forced to sign hepatitis waiver that they will take no further action for HIV and hepatitis viruses or no-one will receive recompense. Haemophiliacs can make informed choice about hepatitis A and B as they have been tested. They are advised by solicitors including Tony Mallen of Deas, Mallen, Souter, that hepatitis C is “no big deal”, “nothing to worry about” and “less of a problem than hepatitis A and B” (contrary to medical and research papers within the HIV litigation documents which were NOT shown to haemophiliacs at the time but which I recently accessed.) All haemophiliacs (bar those in Scotland we now know) signed the waiver. Solicitors DID NOT advice that haemophiliacs consider having a test for hepatitis C which was available, or advised NOT to sign the waiver if they did not have this test. Scottish lawyers take out waiver and haemophiliacs in Scotland are NOT means-tested! The problems of HCV were known about by Government (department of Health) long before 1991, haemophiliacs were NOT informed.
I have a letter from John Horam dated 12th March 1996 which is a reply via my MP to my question “what did the Government know about hepatitis C at the time haemophiliacs signed the waiver in 1991”. John Horam, (former Health Minister) states
“ALTHOUGH IT IS CORRECT THAT MORE INFORMATION ON THE NATURAL HISTORY OF HEPATITIS C IS BECOMING AVAILABLE, AT THE TIME OF THE HIV HAEMOPHILIA SETTLEMENT IT WAS KNOWN THAT IN SOME CASES NON –A, NON –B HEPATITIS, AS HEPATITIS C WAS THEN KNOWN COULD LEAD TO SERIOUS LIVER DISEASE AND SOME DEATHS HAD ALREADY OCCURRED IN UK HAEMOPHILIA PATIENTS.”
WHY WERE HAEMOPHILIACS NOT TOLD THIS?
WHY WERE THESE DEATHS KEPT QUIET?
WHY HAVE FAMILIES FOUND THAT THEY HAVE HAD PROBLEMS GETTING HEPATITIS C PUT ON DEATH CERTIFICATES WHEN THEIR LOVED ONE HAVE DIED AS A RESULT OF HEPATITIS C INFECTION?
AT NO TIME were haemophiliacs informed of high NANB hepatitis risk related to treatment. Haemophiliacs were in fact misinformed in 1991 and told by their solicitors that NANB hepatitis was “nothing to worry about” and “less of a problem than A or B.” Complaints are now going to the OSS with regard to advice or lack of advice to litigants with regard to hepatitis C when signing the hepatitis waiver in the HIV litigation.
House Of Lords ruling 1984 states that a patient has the right to know of substantial risks involved with taking treatments,THIS NEVER HAPPENED. WHY DID MEDICAL PROFESSIONALS OFTEN FAIL TO DISCUSS THE DANGERS ASSOCIATED TAKING FACTOR CONCENTRATES AND THE HEPATITIS C VIRUS WITH THEIR PATIENTS?
NOVEMBER 1991
The national Haemophilia Society discusses hepatitis C at a trustees meeting. (Minutes available). The Society had asked two trustees to look at hepatitis C and seek expert advice on hepatitis C. Incredibly trustees report back that hepatitis C isn’t a big issue for haemophiliacs and these trustees step down from their fact-finding task. Individual haemophiliacs writing to the Haemophilia Society for advice on hepatitis C are advised that it isn’t a problem and that they are the only ones worrying!
1994
Many haemophiliacs are finally told that they have hepatitis C virus. 99% of haemophiliacs infected with HIV also have hepatitis C. There are around 2,800 haemophiliacs/persons with bleeding disorders in the UK with hepatitis C. My partner is officially told that he has been infected with the hepatitis C virus in May 1994. We later find out from accessing medical records that he had been tested for hepatitis C without his permission years earlier and he was not told the result of that test at the time. As part of GMC guidelines he should have been offered pre and post -test counselling. *(It would have been very east to test haemophiliacs for hepatitis C without their knowledge as they routinely give blood for blood clotting levels to be monitored.)
I start asking questions and seek legal advice with regard to litigation on behalf of my partner returning to one of the original solicitors who dealt with the HIV litigation- Mr Anthony Mallen, (Newcastle). We are told nothing can be done as my partner has signed a hepatitis waiver. It is then that the significance of the hepatitis waiver becomes apparent. Mallen refuses to take on the case and we find another solicitor Mr Graham Ross, of J Keith Park, Liverpool) another of the original HIV solicitors who does take on the case.
I start campaigning on blood safety and contamination issues including hepatitis C. I collect evidence and raise my concerns over the specific treatment problems of co-infection HIV/hepatitis C with my MP, Mr Jim Cousins, Newcastle. I urge the Haemophilia Society to start campaigning on hepatitis C. They are still saying hepatitis C isn’t an issue for their members even though we know haemophiliacs have died and are dying from hepatitis C.
1995
Haemophilia Society finally launches it’s hepatitis C campaign asking for a recompense package but decides to exclude those haemophiliacs who are co-infected with both HIV and hepatitis C. This divides the haemophilia community and I protest in writing over a 5 year period before pressure finally forces them to include ALL haemophiliacs infected with hepatitis C including the co-infected. I protested at that time that the Society was using the death figures of the co-infected as the majority of deaths from hepatitis C are in the co-infected group (HIV/HCV) yet not campaigning on behalf of co-infected as well as mono-infected (hepatitis C).
Hepatitis C is now taking over from HIV as the biggest killer of haemophiliacs in Europe and the U S. (Please note that following on from my early attempts to work with the Haemophilia Society (1994) four years later I attempt to join a peaceful protest at Westminster in (1998) but I am told by the Chief Executive of the Haemophilia Society that I am not welcome because my partner also has HIV as well as HCV and they are NOT campaigning for people like him and “it would be embarrassing if we had to remove you”. I stand my ground and am escorted into Westminster by my MP Jim Cousins who has helped me since 1994. )
I fight for my partner to get legal aid to fight for justice over hepatitis C infection showing our evidence and Pete eventually becomes a legal test case.
Problems of co-infection finally highlighted in articles such as Professor Lee’s “HEPATITIS C AND HAEMOPHILIA, Co-infection with HIV is common and will demand great resources.” Published in the BMJ vol 310 24th June 1995.
1996
I request recombinant for north-east haemophiliacs in writing in 1995 because of concerns over the possibility of v CJD being transmitted in blood products, we are turned down in writing by the RVI Trust in March 1996. Pete has his first of 12 exposures to v CJD in November 1996.
1998
British plasma banned over CJD risk.
PRESS 1998 ONWARDS
We make moves to increase campaigning, to educate the press and have information on haemophilia issues published. Regional newspapers the Newcastle “Journal” and “Northern Echo” take up a number of issues including our legal fight, our fight for synthetic treatment, recombinant for all, concerns over the possibility of v CJD in blood products etc. We also receive support from “Private Eye, the Guardian and Meridian TV (Holly Lewis) makes a documentary entitled “Blood Brothers” highlighting the issues.
1999/2000
My partner, Mr Peter Longstaff public ally leads the way for a treatment strike refusing all human derived plasma products on the grounds of safety and the fact that companies using paid blood donors are promoting an immoral trade. W e win our fight in theory for recombinant with the local health authority on the above grounds putting forward a detailed well- reasoned argument to provide recombinant for all, when suddenly there is a world shortage of recombinant which puts this on hold.
Peter refuses treatment over continued safety concerns and because of the moral issues over using third world countries for plasmapheresis. (The case highlighted by Dr Gao (China) who spoke out and revealed that the same collecting equipment is being used to collect plasma from many donors spreading AIDs, some of this blood goes on to the world market. Dr Gao is awarded Jonathan Mann global health award to be presented in America but she is not allowed to leave China to collect award.
Peter Longstaff chooses to use old fashioned treatment cryoprecipitate from small local pools of volunteer donors to explode the myth that there was never a safer alternative to plasma concentrates for severe haemophiliacs. Peter had used cryoprecipitate before concentrates were introduced and found that they worked as a treatment. However he states his continued wish to be given recombinant as cryoprecipitate cannot be heat-treated, although morally he believes this is a better treatment as it comes from a carefully screened group of local volunteer plasma donors and does not harm or exploit donors.
We also fight for health authorities to provide funding for interferon/ribavirin to treat haemophiliacs with hepatitis C. We fight for haemophiliacs infected with hepatitis C through NHS treatment to be exempt from prescription charges for interferon/ribavirin.
We find out that Mr Ross (solicitor) has let my partner’ case go out of time without doing the work as promised and informing us of this time factor. We complain in writing to the Office Supervision Of Solicitors (OSS) who agree that our complaint is valid. They advise we can take a case against Ross or try to find another solicitor to continue the hepatitis C case as taking a case against Ross could tie up our files for a long time. We then go back to J Keith Park, the firm where Mr Ross originally worked and Mr Denis Whalley agrees to take on the case and it continues after the time factor is extended because of exceptional circumstances. We are told by Mr Whalley that Mr Ross was pressurised to leave this firm, as the company was not happy with his work practice.
2001
Haemophiliacs are told that they have now been exposed to the theoretical risk of v CJD after they receive blood from a donor(s) who have died from variant CJD. Haemophiliacs are only told that they have been exposed after I leak letters from Government and BPL advising that haemophiliacs NOT be told.
We fight for guidelines on treating haemophiliacs exposed to variant CJD as some haemophiliacs are now being refused treatment due to concerns over re-using surgical equipment. (Heat-treatment does not kill prions.)
May 2001
Haemophilia Action UK meet with Lord Hunt for a 90 minute discussion and presentation of our campaign aims.
June 2001
Weber Shandwick a PR company recently employed by the Haemophilia Society hold a session at the AGM to launch the “new” HCV campaign aims. There is a strong protest from infected haemophiliacs who feel that their opinions are being ignored. The campaign drops the call for a lumpsum pay-out focusing on a “hardship fund”, there is an outcry from the widows. We write strong letters of protest to the Chairman of the Haemophilia Society expressing concerns over a Society who as well as receiving Government funds gets regular funding from the same companies that contaminated haemophiliacs. (In the U. S. their society, the National Hemophilia Federation (NHF) was named as the fifth defendant along with the plasma companies as it could not be seen to give independent advice on product safety whist receiving funding from the plasma companies.)
JULY 2001
We receive a reply from Lord Hunt on 25th July once again turning down our demands for justice although recognising the need for up to date CJD guidelines.
AUGUST 3RD “Face The Facts” BBC Radio 4 broadcast.
CANADA -public inquiry, recompense, recombinant, criminal investigation. Red Cross found legally negligent over donor sourcing. Criminal charges pending for plasma brokers and identified others.
EIRE, public inquiry- Lindsay Tribunal, ongoing. English doctors giving evidence. Full recompense package awarded. Recombinant prescribed to all haemophiliacs including those over 16.
2002 Haemophilia Action UK greatly increases campaign work which includes numerous international, national and local press, radio and TV articles and participation in an international documentary series on the history of blood use to be screened on Channel 4 entitled “Red Gold” based on the 1998 science book “Blood. An Epic History Of Medicine And Commerce by Douglas Starr.
Haemophilia Action UK in conjunction with the Manor House Group attends a meeting with Health Minister, Yvette Cooper to discuss our campaign objectives and to call once again for justice. The Department of Health fail to send us minutes of meeting which is highly controversial but we have minuted this meeting for our own records. (All the issues we raise are ignored.)
Our regular international contact with U. S. haemophilia campaigners proves fruitful. They contact Haemophilia Action UK and offer help with U. S. lawyer contacts in recognition of our international campaign efforts. I set up contact with the firm of Leiff Cabraser and Bernstein, California. through our then solicitor Mr Whalley and offer to open this up to other UK haemophiliacs in addition to my partner. We meet U.S. lawyers who fly over on two separate occasions to assist UK haemophiliacs bring future cases against the U. S. plasma companies. I set up meetings in Scotland and Eire for U.S. solicitors with a future meeting for Northern Ireland. Other haemophiliacs from Europe also join the litigation. This is on a no-win, no fee basis through the U. S. solicitors and does not involve legal aid from this country.
Haemophilia Action UK along with members of the Manor House Group ask police to investigate the contamination of haemophiliacs and the complaint is referred to Wales Police who investigate cases of national importance.
CONFIDENTIAL. Peter and I decide to sack our solicitor Mr Whalley with regard to a matter of serious concern over his unprofessional behaviour, which is now being investigated. We replace Mr Whalley with another solicitor Mr Patrick Rafferty, (McKeag, Newcastle) and apply for further legal aid to take a treatment case forward and explore issue of testing without permission.
Canadian Police bring criminal charges on behalf of haemophiliacs against the Canadian Red Cross, four doctors and a U.S. plasma company, Armour, (whose products were used extensively in the U.K
EIRE. Lindsay Tribunal Report (investigation into infected haemophiliacs) considered a “whitewash”. Eire wants investigation into U. S. plasma companies.
ITALY brings criminal charges against health officials, plasma companies.
SCOTLAND, Scottish Executive Report into contaminated haemophiliacs considered a “whitewash”.
2003. We launch campaign to stop the international trade of using blood from paid donors in line with new European Commission Proposals.
We highlight the issue of testing haemophiliacs for hepatitis C WITHOUT PERMISSION through the press, with complaints to the General Medical Council and call for an urgent public inquiry.
2003 MAIN OBJECTIVES- HAEMOPHILIA ACTION UK
1. RECOMBINANT SAFE TREATMENT FOR ALL HAEMOPHILIACS
2. A FULL AND OPEN PUBLIC INQUIRY- THE TRUTH AND AN APOLOGY FOR MISTAKES MADE
3. RECOMPENSE ON A PARITY WITH EIRE
4. JUSTICE THROUGH THE UK LEGAL SYSTEM PLUS EXPLORE HUMAN RIGHTS ACT. (EUROPE IF WE ARE UNABLE TO GET JUSTICE THROUGH THE USUAL ROUTE.
5. U. S. LITIGATION UK HAEMOPHILIACS V U.S PLASMA COMPANIES.
6. HAEMOPHILIA ACTION UK CALLS FOR A WORLD-WIDE BAN ON THE USE OF PAID DONORS AND RESULTING PRODUCTS.
END
NOTE: The solicitor Mr Whalley was later struck off and Grayson’s case upheld by the Office of Supervision of Solicitors (OSS)
Links
Blood scandal campaigners are ‘right to be angry’ says top barrister warning wrongdoing medics should face criminal courts (Newcastle Chronicle, 3rd February, 2023) written by Sam Volpe
Sam Stein KC hit out at the Government and doctors who treated patients without their consent in a moving closing address to the Infected Blood Inquiry.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”
Note sent to Grayson early 2000s from US campaigner “Bill” with a boxed collection of US plasma company gay donors ads
New campaigners to the Contaminated Blood scandal may be surprised to learn that long standing campaigners had much key evidence decades ago. Haemophiliacs were infected with HIV and hepatitis viruses throughout the 1970s and 80s via factor concentrate blood products used to treat their hereditary condition which was often imported from the US. It wasn’t as if there was a shortage of damning documents detailing how this came about, rather the UK government did not want to address the evidence amd most mainstream media kept telling activists that the “tragedy” as it was referred to in those days by the press was a “dead story”! The reality was, the “scandal” as it was known by campaigners was very much alive and haemophiliacs were dying at a high rate from their exposure to deadly viruses.
At the beginning of the Infected Blood Inquiry set up to investigate the scandal, chaired by Sir Brian Langstaff which began in 2018, haemophiliac Colette Wintle and this author Carol Grayson jointly put forward the name of Paul Cunningham, current Political Correspondent for RTE News and Current Affairs whom Grayson has known for 2 decades as a person to be interviewed. Grayson began to have contact when some of Grayson’s research on the international US side of the blood scandal dovetailed with Cunningham’s documentary work to uncover the distressing details of this story as haemophiliacs in Eire had received some of the same US products as haemophiliacs in the UK. Also from 1996 after following the legal progress in Eire and stories from Cunningham and others, Grayson had initiated her own campaign aim for a public inquiry and “compensation on a parity with Eire.” This appeared to be the best compensation scheme that could be found globally.
Back in the 1990s, Grayson and her haemophiliac husband Peter Longstaff (who was infected with HIV and hepatitis viruses through US blood products) had set up their campaign group Haemophilia Action UK. They had brought about the first legal case to try to overturn a controversial hepatitis waiver in the 1991 HIV haemophilia litigation on the grounds of government and lawyers withholding of key evidence regarding the dangers of hepatitis C and lack of obtaining “informed consent”. The Undertaking or “waiver” as nicknamed by Grayson meant that haemophiliacs had unwittingly signed away their rights to litigate for hepatitis C not knowing they had been infected for years though their lawyers and the government were fully aware that 99% of haemophiliacs with HIV were also infected with hepatitis C. They simply did not tell them!
The late 1990s was also when Longstaff became the first haemophiliac in the UK to initiate a treatment strike refusing human derived factor concentrates until his death in the Spring of 2005. Longstaff was fighting for recombinant synthetic treatment for all haemophiliacs and the Judicial Review of his case was heard in the High Court. Although he did not win, (as the Judge stated it would open the doors on “post code lottery” prescribing way beyond haemophilia into other areas of medicine) it helped to keep the argument for safer treatment in the press and recombinant was eventually phased in by age, youngest first, for all haemophiliacs.
By the early 2000s, Grayson and her husband Peter Longstaff had launched their own Bad Blood media campaign jointly with the Newcastle Journal. They were preparing their first official complaint to the police and complaints to the General Medical Council (GMC) on testing haemophiliacs without permission and withholding of positive test results. At this time also, Wintle was instrumental in persuading journalist Holly Lewis (Meridian TV) to make the documentary Blood Brothers and was interviewed with her husband Steve for the programme on her experience as a female haemophiliac infected with hepatitis C.
Grayson provided research regarding haemophiliacs attending Lord Mayor Treloar College and contacts for Lewis to interview in the Meridian area as the couple were outside of the region. The college for children with disabilities, was where Longstaff was prescribed his first factor concentrates on a treatment trial as a child, the product he was given was Hemofil. She also introduced Holly to Lord David Owen a former junior health minister who had given a commitment in the 1970s for the UK to be self sufficient in blood products which was never carried out after he left office.
Unfortunately however the Haemophilia Society at that time weren’t ready to help expose the abuse and experimentation carried out on haemophiliacs at the college and Grayson’s efforts to show key aspects of this were watered down or omitted altogether once the Society intervened to try to control the narrative of the documentary.
Early 2000s was also a time when Grayson had made contact with documentary filmmaker Kelly Duda who was exposing the plasma programme at Arkansas State Peniteniary. Grayson was researching similar at Angola State Penitentiary, Louisiana. At the request of Grayson, the Journal newspaper had engaged early on with Lord David Owen, former Health Minister, to interview him on his commitment to self sufficiency in the 1970s. Grayson and Longstaff were also collaborating with US and Canadian campaigners who had given her and Peter the contact details for the America lawyers they considered “most trustworthy” as they too had experienced unethical behaviour from certain law firms. So the couple made contact with Chuck Kozak of San Francisco Law Firm, Lieff Cabraser Heimann & Bernstein and were jointly initiating their legal case in the US against four pharmaceutical companies with Pete’s legal aid funding not only for themselves but to help other haemophiliacs and their families too.
Grayson and Longstaff had by now obtained evidence from the sister of a prison plasama donor infected with hepatitis C on the alleged dangerous and unlawful practices at Arkansas State Penitentiary and were working on obtaining compensation for hepatitis C. Though compensation was blocked by government, after hearing the couple’s arguements, their then QC Matt Kelly (former head of the Bar Association) worked with the Haemophilia Society on a key report which led to the financial support scheme called the Skipton Fund to be being established. Infuriatingly this was at the expense of Longstaff’s case once again not being heard in court and controversial evidence was again kept out of the public domain. Thanks to Longstaff gaining legal representation and presenting vital evidence, Skipton did however provide a platform going forward for those that had previously been denied any financial help for their HCV infection. As well as lump sum ex-gratia payments, campaigners have since used scheme registration as a platform to fight for increased monthly payments and finally for those registered with the former schemes (now known as English Infected Blood Suppport Scheme, EIBSS) the infected and their affected bereaved partners to receive the first interim compensation payments on 28th October 2022 as recommended by Sir Brian Langstaff.
In the early 2000s, Longstaff and Grayson had also obtained plasma company gay donor advertisements from US campaigner “Bill” used to help those involved in litigation in the UK and were learning of the evidence and depositions of key figures such as Dr Don Francis, Centre for Disease Control (CDC) who were aiding US lawyers for haemophiliacs with their experience and legal testimony.
Regarding the same time period, late 1990s, early 2000s, the following was later highlighted by Wikepedia, regarding the important work of Paul Cunningham, a journalist in Eire who was documenting their contaminated blood scandal.
From 1999 to 2001, Paul Cunningham reported on the infection of Irish people with haemophilia, with HIV, and with Hepatitis C from contaminated blood products. In recognition, he won “National Radio Journalist of the Year” in the ESB National Media Awards in 2000.[5] He followed this up with a documentary exposing the practices of US-based drug firms that exported infected blood products to Ireland. The programme, Bad Blood, won an Irish Film and Television Award.[6] He co-wrote a book, with Rosemary Daly, on the impact of contaminated blood products called A Case of Bad Blood for Poolbeg Press.[7]
Both Cunningham and Daly along with lawyer Raymond Bradley of Malcolmson Law were a font of knowledge regarding the Lindsay Tribunal and the case for compensation in Eire. Not only that, they were helpful and supporting to Grayson, Longstaff and Wintle at a time when they were meeting with ministers at Westminster but they lost, denied or ignored shocking evidence of safety violations and abuses. I had also contacted Bradley asking if Eire haemophiliacs wanted to join us litigating with Leiff Cabraser Heimann Bernstein lawyers in the US but the reply was that Eire didn’t need to as their compensation at court levels was already set up to pay out haemophiliacs for “extraordinary suffering” on the grounds of “loss and need” though there was no legal acceptance of liability.
The Eire government recognized the importance of NOT retraumatizing victims and delaying justice by forcing them into court. Cunningham however recognized the importance of covering the wider picture through the media including the actions or inaction of the US pharmaceutical companies and the types of high risk paid donors used in America and decided to make a documentary in the early 2000s. This is why Cunningham’s documentary and statement is important to the Infected Blood Inquiry.
At that time, Grayson and Longstaff were being ignored by most mainstream media in the UK. Grayson recalls day after day ringing the Times and Telegraph who were not interested in reporting the evidence and never returned her calls, other mainstream media would only go so far incorrectly reporting the story as an “unavoidable accident”, the government line, if they covered this at all. It was the local Newcastle Journal that began to take the risks reporting key stories previously unknown (sometimes seen then as controversial) and often for the first time. The paper worked jointly with the couple called it the Bad Blood campaign. As previous highlighted, Grayson had evidence but no wider platform due to the continued ignorance and avoidance by national media … (the same media now claiming they always supported us) but the reality was their interest waned for very long periods and they refused to engage with any investigation into Grayson’s (then) newly discovered evidence and documents.
Cunningham was a different kind of journalist that refused to dismiss the concerns of haemophiliacs. Although Grayson had a limited platform, she was able to share details of her US contacts, their lawyer Chuck Kozak, the violations in the collection of US prison and skid-row blood, what she knew of Don Francis and his whistleblowing and the gay donors ads in her posession all of which could be followed up by an interested documentary team which she believed would be able to confirm allegations Grayson was already making to UK ministers that journalists were ignoring in the UK.
With regard to Cunningham’s statement on his awarded documentary, he writes the following in his Infected Blood Inquiry testimony dated 2020,
I was the reporter on the documentary entitled ‘Bad Blood’, which has been viewed by the investigators. The documentary explores the practices of US-based pharmaceutical companies that exported blood and blood products Ireland in the 1980s. The programme was an independent production by Andec Productions for RTÉ. It won an Irish Film and Television Award in 2002 in the News and Current Affairs category.
I also co-wrote a book with Rosemary Daly on the impact of contaminated blood products called ‘A Case of Bad Blood’ published by Poolbeg Press in 2003. Rosemary was the Administrator of the Irish Haemophilia Society.
It has been approximately fifteen years since the making of the film and the writing of the book. I no longer have complete notes and documentary records of my work. The information contained in this statement is the most accurate information that I can provide.
The exhibits to this statement are précised in a table that follows this statement. This table was created by the investigators using documents that I gave them when we met in Dublin.
He goes on to say,
I began reporting on people with haemophilia who received infected blood in about 1997. At the time, I was a journalist at RTÉ.
There was a demand by Irish haemophiliacs to be given a voice, as they had withdrawn from the 1997 Findlay Inquiry which focussed on the infection of women with Hepatitis C following injections with Anti-D.
When the Lindsay Tribunal was set up in 1999, I became RTÉ’s reporter on the tribunal and related issues. I held this position until the Tribunal’s final report in 2002. I attended every day of the Tribunal.
I became very interested in cross-referencing the evidence given to the Tribunal with evidence from outside it.
As the Tribunal went on, I noticed that many international witnesses testified, especially from the US, but only about the global state of knowledge pertaining to HIV and hepatitis C. There was not, however, much investigation into the practices of the US pharmaceutical companies because the Tribunal deemed this to be outside of its terms of reference.
The Tribunal chose not to delve into the conduct of American pharmaceutical companies. The journalist in me felt that this was a fundamental piece of the puzzle that was not being addressed. From an ethical point of view, it was not problematic for us to investigate issues that the Tribunal had elected not to explore.
And
Noel Curran, who previously worked at RTÉ Current Affairs but was an Executive Producer with the independent TV company Andec Productions, approached me with the idea to make a documentary that covered the origins of contaminated blood in the UK by investigating the US pharmaceutical world. We saw the film as plugging a gap that the Tribunal was likely to leave.
Noel also approached Fiona Gough who had worked on the BBC One Panorama episode entitled “Contaminated Blood: The Search for the Truth”. It was the three of us who made ‘Bad Blood’.
We began the reporting process by interviewing people in Ireland who were infected through or affected by contaminated blood. We made contact with a range of people. It was important for us to interview a cross-section of people from different age groups and regions of Ireland.
One of the most important aspects of our work was investigating the plasma collection processes of US-based pharmaceutical companies as this was where coagulation products came from. We wanted to dig deeper into plasma collection, as well as what staff members knew about the infectivity rates of the blood that they were collecting and selling. We also wanted to look into what was or was not done when plasma companies became aware of product that was infected.
After some investigation, we decided to visit three locations in the US: Angola Prison in Louisiana, Los Angeles’ Skid Row, and San Francisco. We chose these locations because each of them represented a different facet of the involvement of US pharmaceutical companies in the contaminated blood scandal.
We chose Angola because of its reputation of housing a “blood factory” prison. Skid Row was chosen because of the many accounts of people with drug dependency donating blood and plasma. We chose San Francisco because it was alleged that gay men were targeted as blood donors because many of them carried the Hepatitis B antigen (HBAg).
Probably unsurprisingly, none of the pharmaceutical companies were amenable to participating in the film despite numerous requests from us.
The American system of paid donors
During our research in the US, we were told repeatedly that blood banks had a huge commercial incentive to bleed as many people, as many times as possible.
We collected many adverts publicised by blood banks encouraging donations. While I no longer have copies of these adverts, some of them featured in the film. The investigators have taken two stills from the film that show these adverts. See Exhibit WITN3531002.
Particularly notable is the first of the two adverts. It is a notice stuck up on a wall dated August 1975 stating that “$10 will be paid on the 2nd donation of the week”. I no longer have a copy of this advert nor can I recall from where we sourced the document.
The US blood donation system in place at the time was one of mass donations incentivised by small payments for each donation. The most regular donors were often people desperate for small amounts of money. These people included people with drug dependency problems and homeless people.
‘Bad Blood’ documents a 1975 statement by Dr Jack O’Riordan, Director of the Irish Blood Transfusion Service (hereafter, the ‘Irish BTS’) at the time. He noted “there are dangers inherent in the type of person who comes forward as a donor”. He mentioned that “drug addicts come forward and these people in some cases have passed certain diseases from one to another… such as hepatitis (a form of jaundice), and obviously these wouldn’t be suited to a blood transfusion service’s needs”.
Despite these concerns, the Irish BTS began importing and distributing US blood products, made in part using paid donors. Our investigations at the time of the film revealed that this was because there were insufficient donors and funds available to make local blood product manufacturing a viable option.
Notwithstanding this, haemophiliacs (such as James Fife who features in our film) were told by clinicians that the plasma used to make the blood products was donated by “medical students and civic minded people”.
Donations from intravenous drug users
We interviewed for the film many individuals who regularly donated blood in the 1980s on Skid Row, Los Angeles where many of them still lived at the time.
In one clip from the film, a former donor says “the people I’d shoot dope with; they’d all already be high when they were donating plasma”. She recalls that the donors knew that the blood bank staff could see “the fresh needle marks but they were getting what they wanted. They wanted the blood”.
She continued: “almost all the people I shot dope with have either died from AIDS or are dying from AIDS. I’m not surprised at all that blood donations turned out to be positive because of the people I knew and know are dying from AIDS”.
Another former donor we interviewed knows now that she is HIV positive. She said on camera that prior to being diagnosed, she would “donate, rest, get up, go buy me a fix”.
She told us that she would “shoot up in the same spot they took the plasma from so there were no marks. Or I’d do it in my neck and wear collars to hide the marks. If they knew that you used drugs, they would refuse the plasma”.
That said, she told us that it was up to the donor to answer the pre-donation questionnaire. She said that donors would regularly conceal their habits and that “they didn’t ask questions one on one – it was always on paper”. The implication is that it was easier to omit or obfuscate information or to lie when questions were answered in written form.
Blood donations from prisoners bled in prison
As I mentioned, an important aspect of the film was investigating the prisons from which donations were obtained. We interviewed former inmates of US prisons. Some of these inmates agreed to be interviewed on camera and many of these interviews feature in the film.
We interviewed some former inmates of Angola Prison about the plasma plant that was set up on the prison’s premises.
The plant was FDA approved and had safeguards in place regarding donations.
One former inmate at Angola told us that despite the rules in place at the plasma plant, “there were ways around them”.
He told us that inmates with hepatitis frequently sold blood, as did intravenous drug users. In his words, “You didn’t have to hide it [if you were an IV drug user]. Nobody cared… You wanna sell it? You got it? We’ll buy it. Bottom line”.
The former-inmate told us that “a lot of time, there were people working in the plasma unit who were drug abusers, giving plasma”.
Procedures were often not adhered to. For example, plasma collected from one person may be deliberately recorded as coming from a different individual.
When asked about HIV and AIDS, the former-inmate interviewed on film told us that drug users and homosexual donors “continued to give it [blood donations]” after the HIV outbreak was publicised. This was echoed by other former-inmates.
Through our work on prison plasma centres, we came into contact with people who provided us with documentation related to this area of investigation.
I remember a document from 1982 that stated that plasma from prisons had no higher level of Hepatitis infectivity than blood of other origins. I am no longer in possession of this document.
Targeting of gay men as blood donors
As I said previously, one of the issues that we investigated was the deliberate encouragement of gay men to donate blood and/or plasma by US pharmaceutical companies.
Charles Kozak, an American lawyer we interviewed for the film, told us that “homosexuals had built up a resistance to Hepatitis because of their sexual practices”. The “drug companies” therefore recruited gay men as donors as Hepatitis B antibodies in their blood was desirable.
We contacted Donald Francis, a former employee of the Centers for Disease Control and Prevention of the United States (hereafter, the ‘CDC’), the leading national public health institute. In this capacity, he advised pharmaceutical companies and tracked the development of diseases.
We met with Mr Francis in 2001. He provided us, at this meeting, with a deposition of his, that he had made prior to our meeting (Exhibit WITN3531003). As I understand it, the deposition was a supplemental expert report that is now a public court document in America.
The handwritten annotations on the copy attached to this statement are my notes and comments. The video testimony that we took of Mr Francis for the film closely mirrors the deposition.
He explained that “since 1996”, he learned that Cutter, Baxter and Alpha “collected plasma from urban homosexual men for Hepatitis B immunoglobulin (HBIG) production; used that same plasma in the manufacture of Factor VIII and IX concentrates prescribed for hemophilia; and continued to market this dangerous product after it was well-established that the source plasma presented the worst possible risk of AIDS to haemophiliacs”.
I saw this process as a perfect design for infecting haemophiliacs with HIV.
In Donald Francis’s words, “the same conduct that made urban homosexual men valuable plasma donors caused multiple other diseases that made this population inappropriate donors for any other blood or plasma product”.
We found some newspaper and magazine adverts that evidence the deliberate targeting of homosexual donors. Examples of these were annexed to Donald Francis’s [1] deposition. The investigators have attached a still from the film that evidences these adverts (Exhibit WITN3531004). I no longer have a copy of these adverts.
We had in our possession at the time of making the firm a number of internal memoranda, particularly from Cutter. The memoranda evidence that blood containing Hepatitis B antigen was used first for extraction of HBIg and then for blood products for haemophiliacs.
One FDA memorandum (dated 20 August 1982) referred to in Donald Francis’s deposition noted, after a meeting with Cutter representative Mr Moore, that “under usual circumstances, these units [of plasma taken from a predominantly male homosexual plasma collection point] … would have been pooled with other units collected for use in Hepatitis B immunoglobulin (HBIG).”
He continued: “The cryoprecipitate would have been removed and pooled with cryoprecipitates obtained from ordinary plasma pools…”. I do not have a copy of this document in my possession, but its contents is covered in paragraph 13 of the deposition of Dr. Francis.
One Cutter memorandum dated 30 August 1982 (Exhibit WITN3531005) notes that “until recently Cutter’s anti-HBs plasma (all collected from centers dealing predominantly with homosexuals) has been used in the manufacture of coagulation products”.
We also obtained a letter (Exhibit WITN3531006) authored by Hyland Vice President, Michael Rodell, to the FDA dated 15 September 1982 in which he stated that Hyland “…is not engaged in any recruitment programs targeting the homosexual community for plasma that may be used in the production of Antihaeophilic Factor (Human)”.
On 9 December 1982, however, Mr Rodell wrote to the National Haemophilia Foundation regarding HBIg production (see Exhibit WITN3531007). He stated that “we no longer allow this plasma to enter those pools leading to AHF [Antihaemophilic Human Factor] manufacture”.
As Donald Francis concluded, “the only reasonable conclusion is that defendants Cutter, Baxter and Alpha used the high-risk plasma to make Factor concentrates until July 1982”.
Donald Francis in his deposition stated that “this document indicates that Baxter did mix high risk Hepatitis B plasma into the Factor concentrate pools, until several months before the December 9 1982 letter.”
He also noted that a meeting was held in July 1982 at the CDC. The meeting was attended by representatives from Cutter and Hyland. Dr Francis stated that “[they] never disclosed to the CDC, at the July 27 1982 meeting, nor at any time during my employment at the CDC, that they used HBIG plasma donated by urban homosexual men for the manufacture of Factor VIII and IX used by haemophiliacs”.
Donald Francis also told us in an interview that is recorded in ‘Bad Blood’ that “if the companies had done what we [the CDC] had recommended, and indeed kept the material collected from high risk donors out of the market forever, we would have saved probably half of the haemophiliacs”.
Moreover, he stated that “plasma taken from homosexual men should never have been used for any purpose other than the production of HBIG or Hepatitis B Vaccine. The use of such plasma in the manufacture of Factor VIII and IX concentrates for hemophiliacs was unconscionable, particularly after the summer of 1981 when the epidemic of fatal immunosuppressive disease in this population became public knowledge”.
This information did not go before the Lindsay Tribunal given that it did not examine US pharmaceutical companies.
Internal documents of pharmaceutical companies regarding blood products
At the time of making the film, we had in our possession a number of internal documents from various pharmaceutical companies. Unfortunately, I no longer have copies of these documents.
These documents evidenced that by February 1983, the Food and Drug Administration (the ‘FDA’) had received assurances from pharmaceutical firms that prison plasma would no longer be used in haemophilia blood products.
Despite these assurances, Highland continued using plasma from prisons in the manufacture of these products for a further eight years.
An internal memorandum from Armour revealed that senior executives in the company had serious concerns about the safety of all heat-treated products. Despite these concerns, a decision was taken not to tell the FDA about these doubts.
These concerns were based in part on findings by Dr Alfred Prince, who had conducted tests on Armour’s Factor VIII. He concluded that despite being heat treated, virus remained present in the product.
Dr Prince informed us that Armour prevented Dr Prince’s publication of these findings and continued to distribute its products in Ireland, the UK and more widely.
By February 1986, Dr Prince was so concerned about Armour’s heat treated products that he decided to raise his doubts publicly at the UK’s major conference on AIDS.
He had colleagues whose patients had tested positive for HIV after treatment and whom had tested negative before. He told us that “by the time [he] blew the whistle, [he] knew of two definite cases, and two or three suspect cases. [He] decided that the time had come to make this knowledge public”.
He also told us that “manufacturers of the product got together to make a petition to stop [him] from saying [he] was worried”.
Later in 1986, Dr Prince’s findings regarding Armour’s heat-treated product finally made it to print in the Lancet medical journal.
Four months afterwards, Armour recalled its product.
This narrative was aired at the Lindsay Tribunal when Dr Prince gave evidence. It is his view that fault lies with Armour for blocking him from publishing his findings.
Reactions to the film
After the film was aired, I was relieved that the response from the haemophilia community was positive. I felt that we had given a voice to thousands of haemophiliacs who had for years felt like the silenced “small guys” against large corporations. For four or five years after the release of the film, I was contacted numerous times by members of this community, many of whom thanked us for publicising this story.
The release of ‘Bad Blood’ led to a question being asked in the Irish Parliament about why the state had not held the American pharmaceutical companies responsible for their actions.
The film also sparked interest in the possibility of a second tribunal. Paul Gardiner SC[2] wrote an opinion piece on the merits of legal action against the pharmaceutical companies. Ultimately, it was decided not to initiate proceedings[3] .
Other issues
At the time of filming, I was very much on top of the facts. I was careful to be as fair and as accurate as I could be at all times, not least because I was alive to the risk that the pharmaceutical companies may institute legal action against us. This did not happen.
During our research for the film, we contacted both plasma collection companies and concentrate manufacturers. Neither would comment or be interviewed.
I stand by every claim that we made in the film.
Personally, I think it is a real shame that the pharmaceutical companies were never taken to court. I feel that they were never made to defend their actions despite the fact that many people died as a result.
END
It is a great pity that the RTE Bad Blood documentary made by Cunningham and the team although seen by the Infected Blood Inquiry was never able to be shown in public in the UK despite repeated requests for this to happen. With regard to public inquiries held in the UK, Archer, Penrose and the Infected Blood Inquiry, it was and is most important that US evidence regarding donors, plasma sourcing, safety violations, ignored warnings and the actions of US pharmaceutical companies were/are considered as part of the Terms of Reference where blood products were imported and used on haemophiliacs otherwise there is an incomplete historical picture and the goal of true justice may be denied to the victims.
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”
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.
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.
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]
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,
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”
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”.
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 2022sent 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
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.
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.
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.
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]
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]
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.
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)
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”
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.
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)
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 reportedthat 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”
Carol Anne Grayson (Radical Sister) blog 
