New book published in May 2023
(Image, via Henri Bergeron, Twitter)
Long standing haemophilia campaigners, including this author Carol Anne Grayson will remember the surprise and excitement generated in the 1990s on hearing about the criminal case launched in France to hold those responsible for infecting French haemophiliacs with HIV and hepatitis C through blood products to account.
In 1991, just months after the UK HIV haemophilia litigation concluded, the following was reported in Nature Journal (Vol 353, 31st October 1991), though it was unlikely to have been seen by UK haemophiliacs who were mostly preparing to die having been given only a 5 year life expectancy and exhausted after several years of legal action and trying to focus on staying alive.
French blood scandal echoes across Europe
- Three French officials will stand trial
- Transfusion services elsewhere are watching
London
THE forthcoming trials of three French health officials are causing concern among blood transfusion services in other European countries, where similar charges might be brought. Jacques Roux, former director general of the health ministry, and Robert Netter, former head of the French national health laboratory, were charged last week with failing to prevent the distribution of HIV-infected blood-clotting factors to French haemophiliacs in 1985. Michel Garretta, former head of the French national blood transfusion centre (CNTS) in Paris, is accused of knowingly supplying the infected clotting factors.
The charges have destroyed the morale of the country’s transfusion service. But blood transfusion experts warn that the shockwave from the trial may extend beyond France. Because France was by no means the last European country to begin heat-treating clotting factors supplied to haemophiliacs (which deactivates any HIV present), the action against the Frenchmen sets a worrisome precedent for their counterparts elsewhere in Europe.
In 1992, at the time of an Independent article being published on the French blood scandal (see below) UK haemophiliacs were still very much in the dark regarding the details of the circumstances of their own infection. Most haemophiliacs were not public due to stigma and discrimination surrounding HIV. The 1991 litigation led to an “ex gratia payment” and the Macfarlane Trust had been put in place “for life” so there was a little more security however no litigants had seen what we now know was damning evidence which had been kept out of court and most did not know they were infected with hepatitis C. This was despite haemophiliacs being made to sign a hepatitis Undertaking which Grayson nicknamed “the waiver” signing away their rights to litigate further for “hepatitis viruses” and without realizing the dreadful consequences of doing so.
It would be a further 2 years (1994) before Grayson and Longstaff began their quest to locate and find evidence researching earlier articles on the history of infection and also to look at the French case to see how haemophiliacs and their lawyers had managed to launch a criminal case. Early inspiration for UK haemophiliacs was to come from the forcefulness of French campaigners across the channel who were not going to accept their infection lying down (see following 1992 Independent article).
French ministers cover their tracks on infected blood
Within sight of the Palais de Justice, red dye was poured into the Saint Michel fountain, making the water the colour of blood. Stencilled graffiti proclaimed ‘Aids Killer State’. Demonstrators outside the courthouse shouted slogans which at times disrupted the proceedings.
On October 24th 1992, the Los Angeles Times reported the following.
French Convict 3 in Case of AIDS-Tainted Blood : Scandal: Government doctors knowingly gave the infected blood products to hemophiliacs, 256 of whom died.
PARIS —
A French court on Friday convicted three former government doctors, including the director of the National Blood Transfusion Center, of knowingly distributing AIDS-infected blood products to hemophiliac patients, resulting in as many as 1,000 new cases of infection and 256 deaths.
After a trial that sparked a national political scandal reaching the highest levels of the Socialist government, the three-judge panel sentenced two of the convicted physicians, former transfusion center director Dr. Michel Garretta, 48, and his associate, Dr. Jean-Pierre Allain, 43, to prison.
“To my knowledge,” said Dr. Griffith D. Thomas, a Los Angeles physician and attorney associated with several AIDS-related malpractice lawsuits, “it is the first time that physicians anywhere in the world have been sentenced to jail for a conviction of negligence in AIDS treatment.”
Garretta, traveling in the United States when the verdict was announced, was sentenced to the maximum term of four years. Allain was sentenced to two years.
Another former official with the French Health Ministry, Jacques Roux, 69, was given a four-year suspended sentence. A fourth man, former public health laboratory director Dr. Robert Netter, 65, was acquitted.
The judges also assessed a total of $1.8 million in fines, to be distributed among civil plaintiffs in the case, after ruling that the doctors continued to supply contaminated blood products to French hemophiliacs at least six months after an American blood-screening test and a heat-treatment process, which prevents contamination, were perfected and introduced in other countries.
https://www.latimes.com/archives/la-xpm-1992-10-24-mn-715-story.html
As previously highlighted it wasn’t until that 1994 that Grayson and Longstaff having returned from an extended period abroad began to realize the scale of the cover-up on Contaminated Blood after Longstaff learnt of his hepatitis C positive test result. This was confirmed via a test which had been carried out without his knowledge and permission using blood taken to check his clotting levels and the result although known to his doctors back in 1992 was withheld from Grayson and Longstaff for the next 2 years. The couple realizing they needed to take action, set up Haemophilia North campaigning on both HIV and hepatitis viruses which was later to become Haemophilia Action UK. The Birchgrove group was already operating as an efficient support group for haemophiliacs infected with HIV but was limited in research at that time. The Manor House Group was also set up in 1994 jointly by Peter Mossman and Peter Hughes to campaign on hepatitis C and Colette Wintle began campaigning as an independent campaigner, calling for justice for all.
In 1994, the national Haemophilia Society was still denying hepatitis C was a problem and it took a year of intense pressure from campaigners before the Society launched its own hepatitis C campaign in 1995 though calling only for a “hardship fund” and not compensation. In 1996 Grayson initiated a campaign for “compensation on a parity with Eire” (as Ireland had announced its compensation scheme) and called once again for government to launch a public inquiry.
In the late 1990s, the Society attempted to crush the more effusive language of campaigners, words like “haemophilia holocaust” “experimentation” “guinea pigs” “corporate manslaughter” and references to the Nuremberg Code were frowned upon and any militant approach to campaigning was met with frowns, anger and attempts to silence and make haemophiliacs feel guilty for expressing themselves in such a way. At one demonstration where Longstaff supplied bloodbags (filled with Ribena) as a visual symbol of dirty blood donations, the then CEO Karin Pappenheim refused to take one and turned her back in disgust. However it appeared that the more militant efforts of campaigners in Frances was rather more successful than the staid Society approach in the UK. One funny moment did however emerge in a attempt at stronger activism, when some haemophiliacs managed to handcuff their wheelchairs to railings near Westminster before protection barriers became the norm. This attracted a lot of attention but haemophiliacs were simply lifted up and carried further down the road by police (as fellow activists called on the Met not to be rough in case of bleeds) as it was themselves they ought to have chained and not the wheelchairs.
In the 1990s it was more difficult to make global campaign connections. These were the days before social media, Twitter and Facebook, and it was much harder to locate and speak to haemophiliacs abroad except by letter and very expensive phone calls, there were no special rates for phone deals in the early days and then there was the language barrier. O level French didn’t quite cut it when trying to communicate and ask detailed questions containing a lot of specific medical content and specialist terms. There was however a screening of a documentary on UK TV which highlighted the plight of French haemophiliacs (with subtitles) and Grayson was able to contact the programme and leave her contact details thus establishing some basic contact with fellow campaigners in France.
In 1996, the Irish Times highlighted,
Three decisions taken by French officials in the mid 1980s led directly to AIDS deaths. Although tests which could have detected the contaminated blood were available from a US company, the French National Blood Transfusion Centre preferred to wait until a French test came on the market. Dr Michel Garretta, the director of the NBTC, decided to try to sell off existing tainted blood stocks before a government ban on the sale of non tested blood took effect. And French authorities decided it was too expensive to kill the virus by treating the contaminated blood at high temperatures.
Although there were differences between the cases of the UK and France, documents being discovered by Grayson in England during this same time period were proving equally as damning. Evidence was found relating to safety issues around the importation of US factor concentrates, haemophiliacs as test subjects for experimentation, serious safety violations surrounding the collection of plasma from high risk sources such as prisoners, gay men, sex workers, drug addicts and skid row donors and the use of far higher plasma pools. Then there was the question of dangerous products being dumped on the UK with the search to secure medical and treatment records and learning of the failure to recall suspect batch numbers. In addition, there were issues of non- informed consent and withholding hepatitis C test results, letters revealing that government were already trashing important documents and the unethical behaviour of some of those treating haemophiliacs who were on the payroll of plasma companies. It is a MYTH to think these issues only surfaced in 2017 through new campaigners!
Following on from the French, UK haemophiliacs attempted to establish a criminal case reporting concerns to the police at Dyfed Powys, Wales, asking them to consider “corporate manslaughter” which was their speciality as a force but we now knew the case was sat on and no further investigation was ever carrued out.
The following report was published on further criminal proceedings regarding the French criminal case in 1999 through the World Socialist Website
France’s HIV-infected blood trial set to conclude this week
Former prime minister unlikely to be found guilty
A former French prime minister charged with manslaughter for his part in a scandal involving supplying HIV-tainted blood to hospitals looks set to be exonerated.
The “contaminated blood” trial, which began on February 10 in Paris, looks set to absolve all the high-level politicians charged with responsibility for one of the worst man-made health disasters in France. The prosecution admitted the collapse of their case on February 24.
Due to be concluded on Friday, the trial has revealed the incapacity and unwillingness of all the major parties to deal with this crisis. Former Socialist Party Prime Minister Laurent Fabius, former Minister of Solidarity Georgina Dufoix and ex-Secretary of State for Health Edmond Herve have faced charges of manslaughter and criminal negligence. Seventeen other less prominent officials are also charged with “poisoning” and “complicity to poison”. A final verdict by the judges is expected March 9.
https://www.wsws.org/en/articles/1999/03/hiv-m03.html
On the 10th March 1999 the Guardian reported,
France’s Socialist former prime minister, Laurent Fabius, and two of his ministers, walked free from court yesterday at the end of a four-week trial in connection with the distribution of HIV-infected blood in the 1980s.
https://www.theguardian.com/world/1999/mar/10/7
Fast forward decades later and this author spotted the following post written by Constance Nathanson and Henri Bergeron in 2021 which looked intriguing, especially with reference to how gay men organised or failed to do so at the time of the AIDS blood scandals at that time in the US and France and how that impacted on contaminated blood victims and their campaigns for truth and justice.
Social Production of Political Crisis: Reflections from the 1980s HIV/Blood Wars
Constance Nathanson, Columbia University
Henri Bergeron, Sciences Po
HIV contamination of the blood supply produced a political crisis in France in the early 1990s with ripples that continue to this day (e.g., embrace of the “precautionary principle” leading to rapid suspension of the AstraZeneca vaccine against Covid-19). Comparative cross-national research comparing the emergence and ramifications of this crisis in France with the absence of crisis in the US confronted with the identical circumstances of blood contamination contributes to theorizing the social production of crisis and illuminates the circumstances under which crisis does or does not follow upon a potentially disruptive event. Grounded in sociological theories of organization, social movements, and the interaction of science and society and based on extensive archival research in France and the US, the authors propose a series of hypotheses to account for the stark difference in these countries’ response to the HIV/blood affair. In part these differences were cultural—France’s more powerful mythology around the meaning of blood along with sharp differences between the two countries in normative perspectives on the values of material success and technological innovation. But they were also political and organizational. Social production of crisis requires organizational and political space for its agents to operate. In the US that space was preempted, first by the early organization and political savvy of gay men and, second, by a health care crisis precipitated by the absence of universal health care in the face of a raging epidemic. In France, gay men’s organizations were weak to non-existent and health care was universal, leaving space for victims of toxic blood to organize, creating a political crisis to which the French government was ultimately forced to respond.
No extended abstract or paper available
Presented in Session 188. Pandemics and Society
http://ssha2021.ssha.org/abstracts/210441
In May 2023, the following book was published by the same authors, Nathanson and Bergeron, titled, The Social Production of Crisis: Blood Politics and Death in France and the United States with the following description by Oxford University Press.
- Presents an entirely new take on the AIDS epidemic with a cross-national comparison
- Offers a significant contribution to understanding and interpreting how and why the blood affair unfolded differently in France from the United States and to our conceptualization of the social production of political crisis
- Draws upon original cabinet-level data from French National Archives that normally would be embargoed for 50 years
- Brings together original oral history interviews from US universities and national archives in response to the blood affair in the United States
This further very helpful published page from Oxford Academic Press allows the reader to access an abstract of each chapter detailing the content of the book by clicking on links on the left hand side of the page and looks fascinating reading and Grayson is sending for the book and which will be highlighted to Sir Brian Langstaff, Chair of the UK Infected Blood Inquiry launched in 2018.
https://academic.oup.com/book/45671/chapter-abstract/398050658?redirectedFrom=fulltext
Back in the early 2000s, Grayson and Longstaff were able to launch a legal case against 4 US pharmaceutical companies with the help of lawyers in San Francisco as part of the 2nd generation, dumped treatment cases which came to a conclusion some years ago. Longstaff died in 2005, his death as a result of being infected with HIV and hepatitis viruses through his factor concentrate treatment. As a result of their joint efforts the couple were able to learn far more about the cases of contaminated blood in the US, how the pharmaceutical cases operated and even access US legal depositions to read and submit to the Inquiry.
What will be interesting to learn more about from the new book now is how the US and French cases differ and as highlighted by Nathanson and Bergeron how the role of gay men whether prominent or low key within the AIDS crisis led to differing responses in the two countries. What can we learn from this?
In the UK there have long been issues over discussing the safety impact of gay men donating blood during the 1970s and 80s and the resulting HIV and hepatitis infections in haemophiliacs without being falsely accused of being “homophobic”. Campaigners are advised to be careful what they say regarding the pressure by gay activists on the pharma companies which led to delays in removing gay donors from selling their blood. It is suggested it might not be “politically correct” to express anger at the fact that pharma companies targeted gay men for their “hepatitis rich” blood in their efforts to create a vaccine, then used the surplus plasma to top up the pools for factor concentrates. Haemophiliacs shouldn’t voice deep concern at safety issues rising from the fact of men have unprotected sex with men in cubicles whilst waiting to sell their plasma in US prisons. Nor should they be disturbed at the testimonies of closet gay men in the 1980s selling their blood at plasma centres to “prove” to relatives they were “straight” during the worst of the AIDS crisis. Its a part of Contaminated Blood history that many want to deny.
Over the years haemophiliacs have had to face the fact that some gay men are controlling narratives around the infection of haemophiliacs to avoid dealing with past history and as a form of “damage limitation”. This became an issue of concern regarding (then) closet gay men working at the Haemophilia Society during the 1980s and concerns over a potential “conflict of interest” between gay rights and blood safety and how haemophilia issues were portrayed. Then there are the alleged tensions from some gay men over haemophiliacs infected through blood products being portrayed as “innocent” victims and in their eyes treated differently to others. However it is a fact that haemophiliacs were infected BY the state and its blood policies hence the more recent apologies from government, the setting up of the Infected Blood Inquiry to investigate the circumstances leading up to infection and the response afterwards and to compensate victims of the scandal.
So, to the present day and the Macfarlane Trust established as part of the 1991 HIV litigation is no longer in existence, scrapped by government without consulting all registrants and beneficiaries and another lie told to the public. Long standing campaigners were deliberately kept out of a meeting with a government appointed mediator to discuss any concerns and some were not sent questionnaires to elicit their thoughts and opinions until AFTER the closing date. Haemophiliacs now have to go begging to the Terrence Higgins Trust, the UK’s largest sexual health charity (originally set up to support gay men) that have taken over the remainder of the monies from Macfarlane, for counselling, as nothing else is on offer. This is a ridiculous situation given many can access counselling for free yet may have needs in other directions which are being refused. The message from THT is, that its counselling or nothing.
THT are continuing to speak for haemophiliacs despite knowing little of their past history and are cancelling out long standing campaigners. In addition, the charity is funding Jason Evans, Factor 8 Group who since 2017 has plagiarised the work of Grayson rehashing old stories in the media and claiming he has discovered documents that were discovered by Grayson 2 decades ago and presented to government at Westminster meetings. The evidence was blocked and ignored by government. In 2021, the Haemophilia Society and campaign groups (that now work together) wrote asking THT NOT to speak for infected haemophiliacs, infected and affected partners as the situation with THT had become untenable but to no avail.
On the 11th July 2023, a further letter was sent toTHT from the Haemophilia Society and a number of key campaign groups including Haemophilia Action UK, the group set up by Grayson as follows,
Dear Richard
Thank you for your letter of 21 June 2023 in which you make the offer to cover the expenses of a formal mediation process between THT and former Macfarlane Trust beneficiaries who are also members of the Haemophilia Society.
I have consulted with the following who are former MFT beneficiaries, or represent them:
Haemophilia Scotland, Haemophilia Northern Ireland, the Birchgrove Group, Contaminated Blood Campaign, Haemophilia Action UK, Haemosexual, Positive Women and Tainted Blood. Although they do not represent all former MFT beneficiaries, they do represent a majority.
The view of all these groups remains unchanged from those expressed in the letter to your predecessor Ian Green on 20 October 2021. In that letter the signatories requested that THT no longer represents that it speaks on their behalf on any platforms, including the Infected Blood Inquiry and the APPG for Haemophilia and Contaminated Blood.
HIV infection linked to people with bleeding disorders and their partners constitutes a unique narrative, which you acknowledge in your letter has been a point of tension during the years the MacFarlane Trust was in existence and since it was dissolved without community consultation.
The tensions with former MFT beneficiaries and the groups representing them were exacerbated with the announcement last year that research is being undertaken by Factor 8 being funded from THT former MFT monies, without any explanation of what research is being carried out and with what objectives. It is realised that it is for THT to determine where former MFT funds are directed but regretted that simple requests for information from MFT primary beneficiaries have been ignored.
There are also concerns about claims Factor 8 makes about the provenance of documents uncovered in some cases decades ago by Haemophilia Action UK and that their legal representatives were made aware of these concerns in 2018 and the narrative this offers to politicians of not knowing what was already publicly exposed.
Unfortunately, it has been reiterated to the Haemophilia Society that there is no trust from the former MFT beneficiaries in THT and the offer of formal mediation has been rejected as the groups consulted feel that their views will not be genuinely heard and that their voices will be again silenced and shut down.
Yours sincerely
Kate Burt
Chief Executive, the Haemophilia Society
And on behalf of
Clive Smith, Chair the Haemophilia Society
Bill Wright, Chair Haemophilia Scotland
Simon Hamilton, Chair Haemophilia Northern Ireland
The Birchgrove Group
Contaminated Blood Campaign
Haemophilia Action UK
Haemosexual
Positive Women
Tainted Blood
END
To date, almost a month has passed and THT continue to ignore the letter. They refuse to answer questions on how they are spending the transferred Macfarlane Trust monies, give details of their Tender process and the funding of Jason Evans for “research”. Campaigners do not have a clue what he is researching?
In addition THT are refusing to pay back money to Grayson where it was established Macfarlane had made a mistake in calculating her monthly widow’s allowance leaving her thousands of pounds underpaid. When the English Infected Blood Support Scheme (EIBSS) took over from Macfarlane in 2018 they rectified this paying the owed back money back to 2018 when they came into being and added 8% interest. Grayson was then advised to check with government who owed her the rest and the Cabinet Office referred her to THT. Grayson alerted Macfarlane shortly after realizing a mistake had been made in 2011 even writing to a trustee, a lawyer for help. He replied thanking her for her “excellent letter” but appeared to misunderstand the situation and despite repeated calls from Grayson to Macfarlane to investigate, this never happened.
It was only when Grayson was able to appoint lawyers, Milners, to represent her at the Infected Blood Inquiry that they offered to look at the paperwork accessed from Russell Cooke solicitors and write to THT for the owed back money. The irony is Richard Angell (now CEO of THT) is quick to write and highlight that government should respond swiftly to haemophiliacs and families, be transparent and pay compensation as a matter of urgency yet THT can’t even pay out a widow where an injustice occurred years ago, though found the money to fund her plagiarist. Many haemophiliacs and partners suffer from depression, PTSD, anxiety as a result of Contaminated Blood and the distress caused to already traumatised victims including Grayson appears never ending.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.
Carol Anne Grayson (Radical Sister) blog 