Contaminated Blood: Carol Grayson’s response to Jason Evan’s podcasts on destruction of documents and knowledge of hepatitis C

His Honour Michael Brooke QC who wrote an opinion for haemophiliac Peter Mossman on hepatitis C infection through factor concentrates in April 1989

(Image courtesy of The Times)

Jason Evans (Factor 8 Campaign group) has recently released 2 Podcasts on Youtube entitled, “Dr Rejman and ACVSB Parts 1 and 2” which stands for Advisory Committee On The Virological Safety Of Blood.

In the Podcasts Evan’s discusses how they relate to the Contaminated Blood scandal in which thousands of UK haemophiliacs became infected with HIV and hepatitis B and hepatitis C through plasma treatment named factor concentrates taken for an inherited bleeding disorder. He discusses the destruction of ACVSB documents with the relevant dates and attempts to relate this to events in and outside of the UK that occurred during the same time period. The Podcasts can be heard here,

https://www.factor8scandal.uk/podcasts/2019/9/13/episode-1-dr-rejman-amp-acvsb-part-1

https://www.factor8scandal.uk/podcasts/2019/9/20/episode-1-dr-rejman-amp-acvsb-part-2 

Evans states on the group’s Facebook page that, “we would really welcome all feedback on this” so this is my response with particular focus on Podcast 2.

My response to First Podcast

The main point I want to make on the first podcast is that long before the Dr Rejman and Dr Pickles documents from the late 1980s to which Evans refers regarding knowledge of hepatitis C (also referred to as hepatitis Non-A, Non-B), haemophiliacs were being studied in some details from the 1970s regarding their exposure to hepatitis viruses through factor concentrates. Fortunately I aquired some of these studies unredacted many years ago which are now being submitted to the Infected Blood Inquiry. Often what was published with regard to haemophiliacs including on hepatitis C tended to play down the dangers and severity whereas the unpublished minutes of United Kingdom Haemophilia Centre Doctors Organization (UKHCDO) and raw data documentation and research is more explicit in the concerns and describes how patients (and sometimes their relatives) were being studied in a series of investigations that attracted significant funding. So I would argue although interesting their comments are, they form part of a long line in the chronology of written statements regarding concerns over the dangers and impact of this virus which were often not fully relayed to patients or public bodies.

My response to Second Podcast

Firstly throughout the second podcast Evans uses my terminology regarding the inclusion of a hepatitis “Undertaking” in the 1991 HIV litigation which I nicknamed “the waiver” back in 1994. The government and solicitors acting for haemophiliacs usually refer to the official name which is the Undertaking and was a legal means of ensuring that those infected with hepatitis C (who were also infected with HIV) could not take further legal action for any hepatitis infection.

Although as Evan’s highlights the comments of Dr Rejman support the push NOT to inform some parties including the Haemophilia Society about concerns over hepatitis C infection (which we have highlighted repeatedly over many years, as it happened repeatedly during the 1991 HIV litigation)… a lot of Jason’s comments re destruction of documents are assumptions. Evan’s focuses much of his attention on legal and criminal actions that were happening outside the UK in France and Canada. However, he appears to have total disregard or ignorance of what was actually happening legally and campaign wise during the same time period by the haemophilia community in the late 1980s to mid 1990s WITHIN the UK which may also have affected whether documents were maintained or destroyed.

Evans ignores the work of a core group of long standing and committed UK haemophiliacs and their families and MPs that were actively campaigning as though the campaign groups, Birchgrove, Manor House Group, Haemophilia Action UK and Colette Wintle (independent campaigner) didn’t exist back then. Colette was not only raising concerns over hepatitis C infection in females with a bleeding disorder in the UK but was an early guest speaker on this issue at an international haemophilia conference in the Netherlands highlighting her case.

My campaign colleague, haemophliac Peter Mossman began his LEGAL challenge for hepatitis C infection in 1989 and was supported publicly by his MP who happened to be Lord Morris of Manchester (First Minister for Disabled Persons) who raised some of the first questions in parliament on behalf of his constituent and also my late husband Peter Longstaff and I and Colette.

The launch of Mossman’s legal case PRECEDED the 1991 waiver in the HIV litigation and would have alerted government to the potential of further litigation which they were concerned about ALREADY as documents show that were part of the HIV litigation. Mossman had aquired his first legal opinion on April 25th 1989 from his then QC Michael Brooke who also advised in the HIV litigation. What is deeply disturbing is that Brooke was part of a legal team which failed to notify HIV litigants of the dangers of Non-A, Non-B (hepatitis C) despite the fact that many of the documents in the HIV litigation referred to studies already carried out on haemophiliacs. This was the same legal team that encouraged haemophiliacs to sign a hepatits waiver and failed to study and include all the relevant documentation on HIV according to a solicitor’s note in December 1990 which can be read on the following link,

https://activist1.blog/2019/09/20/contaminated-blood-us-legal-depositions-from-expert-witnesses-used-to-help-win-haemophilia-cases-released-to-uk-infected-blood-inquiry/

I supported Mossman’s case that was passed from pillar to post through several firms of solicitors and accompanied him to visit their offices and later to visit his QCs during which I presented supporting evidence on hepatitis C from the HIV litigation. Time after time we stopped the case from being closed down with addition documents. Eventually Mossman’s solicitors did not want me present as it appeared they were determined to shut down the case and as soon as I was absent that is exactly what happened much to Mossman’s distress. Yet a recent opinion of solicitors reviewing his case highlighted that Mossman had a good chance of winning his case! Mossman has given me full permission to use his documents as required. The legal papers and evidence are now passed to Milner’s solicitors allowing Colette Wintle and I full and unredacted access.

Brooke QC states the following in his April 1989 opinion to Mossman, which is part of a longer opinion:-

3) At least prior to 1985, a lot of the factor VIII prescribed here was from the U.S.A and had been manufactured from blood collected there or, possibly, other places such as Central America. The pool of blood donors in the U.S.A includes homosexuals and drug abusers and the method of collection by purchase tends to encourage at least the latter group to offer their blood. Drug abusers are a high-risk group in terms of blood contamination.

4) From the mid-1970s governments expressed the intention of making the U.K. self-sufficient in home-produced Factor VIII. This would involve substantial expenditure on the blood transfusion service. As I understand it, the U.K. is still not self-sufficient in home produced Factor VIII.

5) As I understand the position from my work on cases of AIDS-contaminated haemophiliacs, the risk of factor VIII being contaminated by hepatitis and the consequent danger to users of being infected with Hepatitis were known in the 1970s and it was known soon after that heat treatment of factor VIII removed this risk.

6) It seems to me that the heads of possible complaints we have have identified in the AIDs cases may equally arise in a hepatitis case. Those heads are as follows.

i. Delay in achieving self sufficiency in Factor VIII

ii. Failure to screen donors

iii. Using bought blood as opposed to donated blood

iv. Delay in heat-treating Factor VIII

v. Inadequacy of warnings in data sheets

vi. Delay in providing heat-treated Factor VIII

vii. Providing non-heat treated Factor VIII, after heat-treated was obtainable, available

viii. Failing in mild cases to avoid Factor VII and use DDAVP or cryprecipitate

ix. Failing in serious cases to stop using Factor VIII or to let the patient make a choice

x. Failing to warn haemophiliacs of the risks inherent in using non heat treated Factor VIII and to give appropriate social and sexual warnings

xi. Failing to blood test haemophiliacs more frequently

A Hepatitis case should be stronger than an AIDS case because the risk of hepatitis contamination was known some years earlier.

Mossman’s 1989 case was followed by further legal cases being initiated by hepatitis C positive haemophiliacs without HIV and the setting up of the Manor House Group (MHG) in 1994.

Years later in 2011, Mossman told the Wythenshawe Reporter,

“Our bodies are constantly being battered by different viruses,” says Peter.”Hepatitis is a really debilitating problem. I have pains all the time with this and I have also been told I am at risk from the human form of mad cow disease. I also have fybro myalgia which really saps your energy. It attacks your immunity and your body feels as though it’s been kicked and it is linked to hepatitis c.

 “What angers me most of all is that in 1985 I should not have been given the products that caused this. There were warnings galore. If I was given the choice of taking these things knowing the risks or living with haemophilia, which I had done for 30-odd years, it’s obvious what I would. But we weren’t given a choice. I was medically raped.”

My late husband, Peter Longstaff and I also set up our campaign group Haemophilia Action UK at the same time as MHG in 1994. At that time we were the first to highlight the hepatitis “waiver” and its implications, had also applied for LEGAL AID to overturn this, highlighted testing without permission and withholding of positive test results to government and were questioning the delay in HCV testing of blood compared to other parts of Europe. We were already fighting for a Public Inquiry into both HIV and hepatitis C infection and also highlighting the criminal cases in France as they occurred and the progress in Canada and the Krever investigation and subsequent report in meetings with our MP Jim Cousins and letters to the British government with demonstrations in London. I have a hard copy of the Krever report which was sent to me many years ago from Canadian campaign associates.

We know from government responses in writing at that time they were fully aware of our fury at the waiver and that campaigners were determined to highlight how the dangers of hepatitis C infection was kept from HIV litigants. Therefore it came as no surprise to discover early on that during this same time period government documents including those from ACVSB were destroyed “inadvertently” or otherwise!

Later in 1996 Haemophilia Action UK initiated our call for “compensation on a parity with Eire” a scheme which paid out on the grounds of “extraordinary suffering” WITHOUT admitting legal liability on the grounds of “loss and need”. This challenged the limited “ex-gratia” payment and begging bowl Macfarlane Trust scheme which was the UK response to the Contaminated Blood scandal.

Evans, who uses documents from his campaign colleague Andrew March (who failed to reference my research work and documents used to help him and his lawyers win a Judicial Review in his name in 2010) are totally ignoring the big legal push on hepatitis C IN this country from the late 1980s onwards and seem determined to write early campaigners out of the history books!

Neither March nor Evans were active campaigners at this time and appear in ignorance of what was happening during this period. They don’t appear to have an extensive back catalogue of campaign work from the 1990s so instead work on assumption with little consultation with those that did and prefer to work from fact.

The Birchgrove Group also produced newsletters and ran support week-ends for those infected with HIV from the late 1980s and were also just discovering in the 1990s (post HIV litigation) that the vast majority of their haemophilia members were co-infected with hepatitis C.

Referring to a government produced report of the year 2000 where Evans mentions the review of documents in relation to whole blood cases…  my late husband and I were also continuing to apply for access to legal and government documents and had been doing so for several years BEFORE 2000 and had acquired some documents by this time. Indeed Government highlighted the 2000 review in letters to us due to our repeated questioning in writing from the 1990s regarding missing and destroyed documents.

The later report Review of Documentation Relating to the Safety of Blood and Blood Products 1970 to 1985 (Non A, Non B hepatitis) May 2007 is a direct written response regarding copies of government documents I had returned to the Department of Health in 2006 giving instructions to Newcastle solicitor Paul Saxon of Blackett, Hart and Pratt. The report states this very clearly but disturbingly omits my name which I am instructing my current lawyers to take up with government. There is mention of the ACVSB files and their destruction in the 2007 report which states “relate to a period post 1985, after the introduction of heat-treated factor VIII and are therefore outside the scope of this review.” This report and many of my letters are now being submitted to the Infected Blood Inquiry chaired by Justice Langstaff and a team have been assigned to examine these documents.

LINKS

Pete Mossman interview with Unilad 2016

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”.

About Carol Anne Grayson

Blogging for Humanity.... Campaigner/researcher global health/human rights/drones/WOT/insurgency http://www.esrc.ac.uk/ESRCInfoCentre/PO/experts/Health_and_Wellbeing.aspx Exec Producer of Oscar nominated documentary Incident in New Baghdad, currently filming on drones.
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2 Responses to Contaminated Blood: Carol Grayson’s response to Jason Evan’s podcasts on destruction of documents and knowledge of hepatitis C

  1. Samuel Smith says:

    This is fascinating. Lord Penrose is not often quoted in positive terms after his whitewash that was the Final Report of the Scottish Inquiry, but he may have been spot on when he described the way clinicians treated their Contaminated Blood patients as “paternalistic”. And from this evidence it looks like the doctors weren’t the only paternalistic players on the scene. In fact while we’re at it, let’s alliteratively add “patronising”, “pernicious”, “profiteering”, “parsimonious”, “protectionist”, and “premeditated”.

    • Thanks for your comment. During this era there was little respect for patients which turned out to be extremely “problematic” in terms of withholding of key information and evidence so patients were often unable to make “informed” decisions. So much trust has been lost in doctors, lawyers, Dept of Health, Haemophilia Society and many feel betrayed!

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