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)…
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. In 2012 Shionogi joined the company. 76.5% of the company is now owned by GlaxoSmithKline, 13.5% by Pfizer and 10% by Shionogi. This ownership structure may change depending upon the achievement of certain milestones.
ViiV Healthcare’s products have a market share of approximately 19% of the global HIV market, making it the second-largest healthcare company, after Gilead Sciences, which is working on the treatment of HIV.
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.
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.
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.”
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 Haemophilia Society statement on “How we are funded” can be read here,
The coming days will be important in terms of how any complaints over THT use of funds are handled. It is understood meetings will take place to discuss concerns this week with haemophiliacs and family members airing their views. Further information on the work Evans will undertake is being released to those who were previously registered with Macfarlane Trust according to emails Grayson received from THT.
An experienced charity leader told this blog,
The Association of British Pharmaceutical (APBI) code of practice which governs relationships with, among others, charity patient organisations is one of the most rigorous in the world. The principles include: acting with integrity, promoting transparency
Charities are highly regulated by the Charity Commission to ensure they behave with integrity and uphold fundraising best practice. Many charities operate a strict ethical partnerships policy and all charities have to submit detailed annual accounts to the Charity Commission and Companies House, being fully transparent on sources of funding and how they are spending funds responsibly. Not for Profits who are not registered charities are not subject to this level of scrutiny.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”