Lord Horam giving evidence on the Contaminated Blood scandal

(Image via the Infected Blood Inquiry posted on Twitter)

The following is an open letter to Baroness Brinton and Earl Howe from Carol Grayson, the author of this blog, following the Victims and Prisoners Bill debate in the House of Lords 16th February 2024. Grayson lost her husband and brother in law to the Contaminated Blood scandal.

Dear Baroness Brinton and Earl Howe,

Thank-you so much for your important and valuable contributions to the Victims and Prisoners Bill debate yesterday and also your kind mention of Colette (Wintle) and I in terms of the US litigation which my late husband Pete and I initiated around 2002, and our “indomitable spirit”. We have the signed agreement with the pharma companies which should certainly help regarding compensation as we were both officially accepted, with a legal agreement and silence clause.

You might find this interesting on my blog,

Contaminated Blood: US legal depositions from expert witnesses used to help win haemophilia cases released to UK Infected Blood Inquiry

Posted on September 20, 2019 by Carol Anne Grayson

Contaminated Blood: US legal depositions from expert witnesses used to help win haemophilia cases released to UK Infected Blood Inquiry

It was something of a shock to see Lord Horam at the debate and to realize it was 28 years since I wrote to him via my (then) MP Jim Cousins, who also penned his own letters and received Horam’s replies, forwarded to me. Colette and I began campaigning in 1994 on hepatitis C one year BEFORE the Haemophilia Society who kept falsely claiming, hepatitis C was “no big deal”! Finally after a year of relentless pushing for the Society to act, they gave in and began their own campaign in 1995.

I highlighted and included the following issues (see below) to John Horam in 1996 when he was Parliamentary Under Secretary of State for Health. I had previously written to Leonard Levy at the Dept of Health. The correspondence back and forth was submitted to the Infected Blood Inquiry. My letters highlighted,

1. Delays in introducing a hepatitis C test in 1991 when other European countries tested earlier to err on the side of caution.
2. Testing for hepatitis C without “informed consent” of haemophiliacs and withholding positive test results.
3. The “high-risk” sourcing of US plasma with specific references.
4. The failure of doctors to warn haemophilia patients of the dangers of hepatitis C
5. Governments knowledge of the dangers of hepatitis C not shared with haemophiliacs at the time of the HIV litigation when the dangers were played down.
6. Deaths due to hepatitis C in the UK haemophilia population
7. Horrific deaths of haemophiliacs as a result of HIV infection.
8. The inclusion of an hepatitis Undertaking (which I nicknamed the “waiver”) included in the 1991 HIV litigation.
9. Viral inactivation
10. The Macfarlane Trust
11. Panorama documentary called “Bad Blood”
12. The announcement of a compensation scheme in Eire (1996) and my call for what I termed “compensation on a parity with Eire” for haemophiliacs and their families.
13. The Japanese compensation settlement announced in the Times and contribution to compensation from pharma companies.
14. Questioning whether the US pharmas had contributed to any payments in the UK.

Government replies referred to “inadvertent infection” these words were withdrawn as incorrect in 2010 after Colette and I took damning evidence to our meeting with Anne Milton (Health) at Westminster. Government also denied negligence and refused to accept liability (1996).  Pete and I began our legal case to overturn the hepatitis waiver in the HIV litigation so we could litigate for hepatitis C as the waiver signed by haemophiliacs in 1991 prevented this. At that time haemophiliacs did not know their hepatitis C status though the HIV litigation (1991) highlighted that around 99% of haemophiliacs infected with HIV were hepatitis C positive. The only ones who escaped were haemophiliacs with inhibitors that could not tolerate factor concentrates.

My MP Jim Cousins wrote to Horam with reference to haemophiliacs and families, “I would strongly urge the government to reconsider (underlined) the issue of compensation in these cases.“

How different our lives might have been if haemophiliacs and families had been compensated in 1996. Today in 2024, we are still waiting and continue to be delayed by government!

Anyway, I am glad Lord Horam is now supporting the need for urgent compensation. Also the letters are a TRUE record of our history and ironically due to the content show Jason Evans, Factor 8 Group once again rehashed what I said decades ago which is NOT new information or evidence as he keeps FALSELY claiming! It is time government acknowledge my awarded work and APOLOGISE to me publicly and condemn those creating FAKE timelines of discovery of documents and evidence! The Inquiry are not stupid and can see for themselves who knew what and when!

I would also like to highlight the contribution made by Baroness Lynn Featherstone at the debate yesterday. The woman is a disgrace. She contacted me alongside Lynn Kelly (Haemophilia Wales) for evidence from my awarded research on Contaminated Blood as neither woman had the relevant documents to tackle the much needed withdrawal of the 2006 Government Report (the so called “definitive” report) which I critiqued for my dissertation. This featured in an ESRC publication (Summer 2009 Issue 4) covering “research that has influenced society since the moon landing” in 1969.

DHSC0200111 – Self Sufficiency in Blood Products in England and Wales – a Chronology from 1973 to 1991 – 27 Feb 2006

https://www.infectedbloodinquiry.org.uk/evidence/dhsc0200111-self-sufficiency-blood-products-england-and-wales-chronology-1973-1991-27-feb

My emails back and forth with Featherstone and Kelly (with Colette copied in as my witness) show I bent over backwards to assist them. However when it came to their meeting with Sir Christopher Wormald, instead of supporting me to explain and deliver my own research, they excluded me, took my evidence to him minus referencing me. I have kept the relevant emails. The report was then withdrawn and they received the apology not the academic that carried out the research (myself). I am STILL waiting to be properly acknowledged and for an apology from Wormald see letter attached. I note Featherstone named and praised Jason Evans who has rehashed much of my awarded research minus any referencing since he appeared on the campaign scene in 2017. He is now funded by the Terrence Higgins Trust and used by many people to cancel me out and present FALSE timelines of who knew what and when.

To reiterate, before the Inquiry began I was threatened that I would be cancelled out of my own campaign history and mainstream media as “punishment” for my other campaigning on the human rights of Palestinians. This is exactly what has happened apart from my local media, the Journal, Newcastle that have known me for 24 years. I will do all I can to ensure the Zionists responsible for WEAPONIZING “antisemitism” against me and my cancelling out are fully held to account though that will no doubt have to be part of South Africa legal cases due to the continued cover -up here in the UK. It is very dirty politics that must be challenged!

Kind Regards

Carol

Grayson wishes to thank ALL those who took time to research and speak at the Victims and Prisoners Bill debate yesterday. This includes Lord David Owen who has worked tirelessly for decades fighting for the truth to be heard and for justice for Contaminated Blood victims, his ongoing support is greatly appreciated. She would also like to thank Baroness Campbell of Subiton for highlighting the diffuclties experienced by partners of haemophiliacs, (many now bereaved) whose first husband died as a result of receiving contaminated blood products. She also pays tribute to Lord Cormack who died recently. Baroness Brinton stated,

The noble Lord, Lord Cormack, told me he was going to speak, and his death over the weekend leaves a large gap, not just in Parliament but for the victims of the infected blood scandal and their families, whom he supported.

He said in the Commons on 13 November 1989:

“No one can give back to these victims the hope of a normal life that was once theirs. No one can remove the uncertainty with which they and their families live from day to day—the uncertainty of when the bell will toll. If any group of people live in the shadow of death, they do. It is no wonder that their story has been described as the most tragic in the history of the NHS … I hope that we shall have a full and good answer from the Minister, but whatever he says, unless he agrees to our request, the campaign will go on and we shall not go away.”—[Official Report, Commons, 13/11/89; cols. 153-55.]

Patrick, we shall go on. May you rest in peace.

https://www.theyworkforyou.com/lords/?id=2024-02-26a.821.0&s=jonathan+evans+MP

The text of the letter to Sir Christopher Wormald (dated 20th November, 2017) can be read below,

For the urgent attention of Sir Chris Wormald, KCB, Permanent Secretary at the Department of Health  

Contaminated blood, Self Sufficiency report 2006 not to be used, my research vindicated

Dear Sir Chris Wormald,

It has come to my attention from a reliable source that due to serious omissions and inaccuracies in the 2006 report “Self-Sufficiency in blood products in England and Wales: A chronology from 1973 to 1991” you have advised in a letter dated 30th August 2017 that “the department should not refer to this document in any future correspondence or for briefing Ministers”. I have viewed this letter.

I commend your decision to finally act on this and do the right thing as both Labour and Conservatives at the highest level have repeatedly blocked and deceived us with this document which is far from an accurate timelines of events with crucial documents excluded. However the government must now address the serious damage that has been done to haemophiliacs and their families since the release of this report from unnamed authors. It is important to note that this report was published as a DIRECT RESPONSE to a dossier of documents submitted to government by the Newcastle Journal and I in our award winning “Bad Blood” campaign. This can be read in back copies of the publication.

As a victim of the “worst medical treatment disaster in the history of the NHS” (as stated by Lord Winston) I critiqued the Self Sufficiency report for my ESRC Michael Young award winning dissertation in 2006, an award presented to me by Sir Peter Bottomley who coincidently happens to be Chair of the APPG for Haemophilia and Contaminated Blood. I also received the COTT Action = Life award in Washington DC for “upholding truth and justice and services to haemophiliacs, HIV and hepatitis C” in recognition of my work but for years the government would not act on my research findings. As I wrote, even the title is a joke as the UK FAILED to achieve Self-Sufficiency… The report should have begun with the words “failure to achieve self-sufficiency in blood products” to reflect the tragic reality which resulted in the loss of the lives of so many of the UK haemophilia community given contaminated blood. I was able to trace my husband’s imported factor concentrate treatment directly back to infected donors selling their blood in Arkansas State Penitentiary with the help of our US lawyers using the batch numbers.

I assisted the 2 ladies who came to see you on this issue, a campaigner from Wales and a Baroness as they requested of me in writing and by phone but apparently one had decided they could present my research on the inaccuracies better than the actual author and excluded me from the meeting until I protested by which I was too distressed as a widow to deal with them anymore. I lost 2 of my family to this disaster, my husband and brother in law from HIV and hepatitis C and a third victim my father in law who died of a heart attack due to the stress of losing his youngest son and campaigning for justice. This has severely impacted on our daily lives and after their deaths left me severely traumatized and now suffering chronic health problems myself. I wrote my dissertation in the months immediately following the death of my husband.

My research has been REPEATEDLY BLOCKED by the government for years despite presenting this in a face to face meeting with Anne Milton in 2010 in the presence of fellow campaigner and contaminated blood victim Colette Wintle with Rowena Jecock and others present from the Blood Policy department and asking for a response on the content. All I got was thank-you, well done on your award letter WITHOUT government addressing any of the issues which I had been promised.

I am furious at the way I have been treated as both a victim and a researcher and request a full written apology from the government as a matter of urgency.

Under Freedom of Information I request to be informed of every time the Self Sufficiency Report 2006 was referred to both in parliament and by politicians with regard to decision making as the haemophilia community was REPEATEDLY told also in personal letters that this document has been used to affect major decision making under both Labour and Conservative governments. This includes whether to “compensate on a parity with Eire” for the current financial Consultation and the scrapping of the Trusts that supported the haemophilia community. In fact it is referred to in parliament as the so called “definitive report” when my research showed it is not worth the paper it is written on due to the omissions as key evidence. I have read the omitted documents in detail so am fully aware of the content which shows alleged negligence of public bodies and serious safety violations time and time again. Not surprising then that these documents were not included in the DOH report!

All government decisions affecting haemophiliacs from 2006 must now be reviewed as a matter of urgency due to the fact the government were very keen to emphasize their reliance on this sham of a report. This has had serious consequences for our community.

You should be aware that many of the documents now being released via the National Archives at Kew are those I returned in 2006 via solicitor Paul Saxon of Blackett Pratt and Hart, Newcastle upon Tyne which formed part of my late husband’s legal files in the 1991 HIV litigation. These were documents utilized within my dissertation with their return to parliament recorded in letters, in Hansard in 2006 with questions from Lord Jenkin of Rodin who tried to assist us in obtaining the truth from government and in the Guardian and other media. They are copies of documents that government wrote to me had been “inadvertently destroyed by an over zealous civil servant” along with the records of former Health Minister Lord David Owen who put money aside for the UK to become self-sufficient in blood products and continues to back my research in writing. After he left the Health Department he discovered his commitment had not been followed through and he has stated in the Guardian that if there was ever a Public Inquiry the government wouldn’t have a leg to stand on. He has called for haemophiliacs to be compensated which has never happened to this day.

If I had not returned copies to them in 2006, due to the government’s destruction of their own records there would be hardly any blood policy documents to review in the National Archives at Kew and show the history of blood policy in the UK and how haemophiliacs came to be contaminated. Perhaps that was the idea? All of the above was shared with the 2 women who met with you and is recorded and others they referred to me.

I look forward to your response as a matter of urgency and call on the government to do the right thing finally and compensate haemophiliacs and their families on a parity with Eire as recommended by Lord Archer of Sandwell in his report “on loss and need” on the grounds of “extraordinary suffering”. The Archer Inquiry had no remit to include liability and therefore Lord Archer informed me that he could not include certain documents shared with him that showed alleged liability but he did utilize a lot of my research and echo my recommendations.

This DOH report has made the situation far worse for haemophiliacs and more have died since its publication going to their graves denied justice. This has got to stop now.

A 2010 review won in the High Court that relied on documents acquired by Colette Wintle and I also showed that Lord Warner (Labour) had misled parliament and the public for years giving a false narrative on Eire, a false narrative relied upon and continued by the Tory government. I have repeatedly written asking them to change this and apologize. There are so many things that need urgently rectifying its hard to know where to start. For years campaigners were told it was not in the public interest to hold a Public Inquiry, finally Theresa May overturned this nonsense, blood safety is an issue for all. Now we need to ensure a suitable Chairperson and panel is appointed as soon as possible for the Public Inquiry… government should not delay the proper compensation promised by David Cameron any longer, victims have waited long enough!

I would also like to draw your attention to the fact that the longest standing haemophilia campaign groups Haemophilia Action UK, Manor House Group and independent campaigner Colette Wintle (Women Bleed Too) with the most knowledge and evidence were deliberately left out of meetings on the financial Consultation and from that point on boycotted it in protest. Therefore I and others allege that the Consultation is undemocratic, unethical and allegedly illegal as the original solicitors representing haemophiliacs in the 1991 HIV litigation under Justice Ognal were not informed of changes so were unable to ensure their old clients had relevant legal representation and advice on their rights. We were essentially blackmailed, told if we did not sign to go to the new organisation our money would be stopped in November. This is not “informed consent” as I was unable to obtain answers to my questions about the future impact on widows and whether their money would be reduced or stopped at the time of signing.

Incredibly despite my late husband being told he and his family would have substantial security for life by lawyers and echoed in written Parliamentary statements, there is now the threat of our money being reduced or monthly allowances on which widows have relied for years being scrapped. This is totally unacceptable. The original lawyers in the HIV litigation have been informed and are as shocked as I and remain deeply concerned regarding what happened in 1991 and as they put it alleged culpability of government with incriminating documents kept out of court, documents that I only saw years after my husband signed a waiver now alleged to be illegal not to take legal action for a second infection with hepatitis C.

Hence government divided our community and families between HIV and hepatitis C infection when both should have been argued together in 1991. (A top QC alleged the signing of the waiver could not have been “informed consent” due to the fact my husband was not told he had hepatitis C at the time and his positive test result was withheld for years!) This dividing of our community was exceptionally cruel given that there may be several haemophiliacs in the same family on different levels of support or for years no support. This was a terrible mistake but a government mistake so do not even think of punishing widows that had nothing to do with this decision by removing their money next April.

I look forward to your prompt response and thank-you again for withdrawing the use of this report. The media are copied in to this letter along with supporting politicians.

With thanks

Yours sincerely

Carol Grayson

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 hemophiliacs had the “Hemophilia Holocaust” recognised years ago so why are UK govt and Opposition still in denial over UK litigants that are part of this holocaust?

(Some litigants were also infected and affected partners)

(Image Hemophilia Federation of America)

Open letter to Nick Brown MP (Independent) dated 14th January 2024

Dear Nick, (The right to official recognition of UK victims Infected and Affected due to “dumped treatment” that are part of the US “Hemophilia Holocaust” treatment scandal ..US spelling)

In case you are not aware, I was part of the American 2^nd Generation Litigation cases in relation to the use of US factor concentrate products supplied by 4 US pharmaceutical companies. This was treatment deemed not fit for use in the US on the grounds of safety so it was exported around the world. These cases came to be known as the “dumped treatment” cases.

Around 2001, my late husband Pete and I worked very hard to set up contact with a US legal firm called Lieff, Cabraser, Heimann and Bernstein in San Francisco who accepted Pete’s case. We asked if others could join the litigation and the firm agreed to take on around another 300 cases of UK haemophiliacs, infected and bereaved partners that had received US treatment including my campaign colleague Colette Wintle. After extensive scrutiny of medical records and factor concentrate treatment batch numbers by our lawyers and the pharma company lawyers, those who had the RELEVANT EVIDENCE were officially accepted by these 4 companies and an agreement was reached around 2009. In the case of some litigants such as Pete, the plasma collected and pooled to manufacture factor concentrates was traced back to individual infected and named US prison donors with HIV/HCV. It only took one infected donor to infect a plasma pool. UK haemophiliacs went from receiving UK cryoprecipitate made from single or handful of well screened volunteer donors to plasma pools containing donations from as high as 400,000 paid donors. The donors were often classed as “high-risk” donors such as prisoners, prostitutes, homosexuals, drug users and donors living on “skid-row”. See reference to the case here,

Blood Factor Contamination Cases

Although we were LEGALLY ACCEPTED, the case was termed to be “forum non conveniens” (not the right venue) by a US judge when UK haemophiliacs attended the US court. The “first line of duty of care” for UK haemophiliacs was deemed to rest with the UK government who must now pay compensation to victims. We can’t go into detail other than what is publicly known due to a silence clause. The judge ruled no further UK cases could go to the US courts and the cases were officially closed some years ago with an agreement with the pharmas.

The infection of haemophiliacs with US products was not called the contaminated or infected blood scandal in the US but the “Hemophilia Holocaust” by lawyers and litigants. The dumped treatment cases are part of that which is a far more appropriate name reflecting the severity of what was PROVEN to be done to haemophiliacs in this litigation and one that most of the public can easily understand in an instant. The term “holocaust” is defined as “destruction or slaughter on a mass scale”. Colette and I stress the importance of our US cases being referred to under the correct term “Hemophilia Holocaust. We are talking about a finite group of around 300 UK cases that took part in the US litigation. In 2018, UK journalist Ian Birrell wrote,

In the United States they call it ‘the haemophilia holocaust’ after use of tainted blood products wiped out thousands of people with the blood disorder.

It is important to note that key safety measures were ignored in the US and the treatment was introduced BEFORE working on a way to virally inactivate. It was done the wrong way round, profit before safety!  Working on viral inactivation for hepatitis as warned by experts in the 1960s should have come FIRST for safety reasons even if it meant delaying the introduction of factor concentrates by years such was the KNOWN dangers of using pooled plasma for this treatment.

Just to point out that the term “Hemophilia Holocaust” refers to all those who received US products as American haemophiliacs and that is extended to those abroad given the SAME US products! Since the Infected Blood Inquiry began I have instructed my lawyers to obtain the US legal depositions which have been submitted to the Inquiry and were used in US haemophilia cases and our US dumped treatment cases.

Using appropriate terminology is particularly important to victims when it comes to truth, justice and compensation. I fully accept the atrocious Holocaust of the 2^nd World War, I was brought up reading holocaust literature (thanks to my mother) and have visited Auschwitz and other memorial sites across Europe but there are other holocausts that must ALSO be remembered before and after the Holocaust of the 2^nd World War. I have discussed this in previous articles. You can’t cherry pick which holocausts you accept or deny, a holocaust is a holocaust and when it comes to the percentage of any population harmed and killed, our holocaust is very high! I went to Auschwitz to remember all those who were harmed and died in the most horrific ways. I also wanted to learn about the shocking experiments of Dr Mengele as I had come across disturbing experiments on our own haemophiliacs without informed consent and against the Nuremberg Code and wanted to examine the trials in that context.

When we met Anne Milton in 2010, we took evidence asking her to remove the words “inadvertent infection” which she did. This terminology was WRONGLY used by successive governments for decades as their form of “damage limitation” however I obtained copies of incriminating evidence including minutes showing government officials were present at meetings when experimentation on haemophiliacs was discussed. Just to say also not all evidence from the Infected Blood Inquiry is in the public domain, some is only accessible through a website called Relativity which we as “core participants” can view and is password protected.

I attach 2 photos of Committee of Ten Thousand COTT demonstrations highlighting the Hemophilia Holocaust.  I attach also a photo of an award I accepted, the “Action Equals Life” human rights award from COTT in 2009 on behalf of Pete and I on Capitol Hill Washington DC alongside the esteemed Dr Don Francis (former CDC, Centre for Disease Control) and the greatly respected Dr Jay Epstein (Former FDA, Food and Drug Administration).

Our Hemophilia Holocaust has long been denied here, no government officials ever refer to the dumped treatment cases or the Hemophilia Holocaust, it is most disturbing, as if it never happened!

Although there is no specific law in this country that directly refers to “holocaust denial”, cases of denial have been prosecuted under the Malicious Communications Act 1988 and the Communications Act 2023.

In conclusion, I ask you to,

1. Please approach government to ensure that there is official government recognition and public acceptance of UK victims Infected and Affected of the US Hemophilia Holocaust (using this terminology) that had dumped treatment litigation cases legally accepted by the 4 US pharmaceutical companies.
2. Please work with government to ensure that those UK victims Infected and Affected harmed during the Hemophilia Holocaust are included in the UK Holocaust Memorial Bill
3. Please work with government to ensure that UK victims Infected and Affected are included in Holocaust Memorial Day events.

With thanks for your help.

Kind Regards

Carol Grayson

Address and Telephone number supplied

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”.

Al-Rantisi hospital under attack from Israel, photo shows the burning car park

(Quds News Network)

On the 9th November 2023, Israel attacked Al Rantisi, the children’s hospital in Gaza where haemophiliacs are treated. They may now be unable to even reach a hospital due to aerial bombardment and even if they do, there is no guarantee of acessing treatment or safety. The staff are calling out for the international community to protect them! A video posted on Twitter shows flames reaching the hospital building and a car burning fiercely. Quds News reported, “the spokesman of the Health Ministry said the Al Rantisi pediatric hospital was among the ones attacked and that large fires broke out in the basement and other areas of the hospital.“

Back in August 2023, before the current conflict between Israel and Hamas, a photo from Steve Sosebee, Palestine Children’s Relief Fund shows haemophiliacs and staff enjoying a recreational day at Al Rantisi hospital. Haemophilia is a hereditary condition where the blood does not clot properly. Treatment called factor concentrates are required to replace the missing clotting factor and bleeding can be very painful especially in joints such as knees, ankles and elbows and muscles which over the years can lead to arthropathy and restricted movement.

In 2013, Al Qassam, Occupied Palestine website reported,

Jad Taweel, chairman of the board of directors for Palestinian Society for Bleeding Disorders (PSBD) said there are 450 haemophilia patients in Palestine facing severe problems in treatment.”

Taweel pointed in press statement on Saturday to the patients’ inability to afford the high costs of treatment, the high incidence of the condition in the Palestinian territories and the lack of treatment in Palestinian hospitals.

He explained that in case of ordinary bleeding, a patient with haemophilia needs 25 therapeutic units at a cost of up to $2,500 per month.

He added: “Unfortunately, coagulation factors are not available on a regular basis for the treatment of haemophilia patients. There are no specialized care services for these patients, according to international protocols, and this increases the suffering of the patients.”

450 haemophilia patients in Palestine face problems in treatment

Although the situation has improved with help from international donors, this does not cover all haemophiliacs and shortages remain. During periods of conflict, supplies are interrupted and hospitals are under threat from bombing and their ability to function and provide the usul services are severely hampered. The following link gives an account of treatment for haemophiliacs when operating normally,

https://www.alquds.com/en/posts/66804?language=he

Hala Borno describes the difficulties for haemophiliacs living in a conflict zone on the following link,

Blood and conflict: managing bleeding disorders in Gaza

WHO EMRO | Blood and conflict: managing bleeding disorders in Gaza | Volume 23, issue 11 | EMHJ volume 23, 2017

The Al Rantisi hospital provides some specialist care to haemophiliacs. This is now collapsing, the following was tweeted from a doctor in Gaza. (Name withheld as doctors and their families are increasing being targeted and coming under attack.)

Al-Rantisi Hospital, the only children’s hospital in the Gaza Strip that deals with chronic diseases for children, children with heart disease, lung fibrosis, cerebral palsy, blood diseases, cirrhosis of the liver, childhood cancer, people with Down syndrome, and many others. Unfortunately, Al- Rantisi is now burning from the bombing.

It is the only children’s hospital that contains a paediatric gastrointestinal endoscope, a paediatric pulmonoscope, an echo device for imaging children’s hearts, a special blood analysis laboratory for children, and other advanced services, which are only found in Al-Rantisi Hospital, and cases from all of the Gaza Strip are referred to it. It’s all burning now…

The main blood bank in Gaza was also targeted, reportedly putting it out of service!

On International Day for Haemophilia, 17th April 2023, al Quds website reported that,

the Palestinian Ministry of Health stated that the number of hemophilia patients in Palestine reached 562, including 178 patients in the Gaza Strip , and 384 patients in the West Bank.

The theme was,

“Access to Treatment for All – Prevention of Bleeding as a Global Standard of Care”, highlighting patients’ suffering and needs and raising the level of community awareness about hemophilia.

AVAAZ describes Gaza as a “walled kindergarten” that is “being bombed to dust” with children making up 42% of Gaza’s population. Kaitlin Hansen from the organization stated,

When the Israeli government ordered a total siege, this is a siege on kids.

It’s boys and girls who are running from the rockets, hiding anywhere to escape the deadly plumes of phosphorus that would burn them to the bone. There are no bomb shelters in Gaza. Food and water have been cut off, and over a million people have been told to flee.

However, when haemophilac children are experiencing a bleed, they may not be able to run away like other children. If they are mobile at all with an agonising untreated bleed into a joint (as treatment may now be unavailable) they will be limping slowly, possibly on crutches or may be immobile having to rely on someone pushing them in a wheelchair or carrying them to find shelter. Even then, as highlighted, Gaza does not have bunkers in which to escape bombardment like Israel.

I raised the issue of apartheid medical treatment of Palestinian haemophiliacs some time ago with Dame Diana Johnson MP who was given her damehood on the back of her campaigning in the UK regarding haemophiliacs infected with HIV and hepatitis C in the 1970s and 80s. At that time plasma used to make factor concentrates was often imported from the US and sourced from high -risk donors such as homosexuals, prisoners, prostitutes, drug users and “skid-row donors”. (My husband Peter and brother in law Stephen died as a result of the Contaminated Blood scandal and my father in law died of a heart attack campaigning for justice, unable to cope with the stress of losing his youngest son.) As Johnson is vice -Chair of Labour Friends of Israel, I asked her why she did not speak up for those experiencing apartheid medical treatment as highlighted in numerous articles on Palestinian haemophiliacs. I was then falsely accused of “antisemitic conspiracy theories” and banned from the email list of the All Party Parliamentary Group, APPG for Haemophilia and Contaminated Blood.

On the 1st November 2023, Human Rights Watch published the following report on the situation for persons with disabilities in a conflict zone (see following link) since then the situation in Gaza has deteriorated dramatically.

Gaza: Israeli Attacks, Blockade Devastating for People with Disabilities

Greater Risks During Strikes, Difficulty Obtaining Necessities, Shelter

https://www.hrw.org/news/2023/11/01/gaza-israeli-attacks-blockade-devastating-people-disabilities

Today, the situation for haemophiliacs in Gaza is dire. The following message was posted on Twitter by a Palestinian doctor on 10th November 2023,

Israel told people inside al-Rantisi children’s hospital to evacuate. They came out waving white flags and then the Israeli military shot at them.

Message from Gaza

Urgent : Tanks are besieging the AL Rantisi Children’s Hospital, trapping medical staff and patients inside. Direct sniping at anyone moving in the area. This is extremely serious

On a video, I could clearly see the children from the hospital waving white flags as they attempted to evacuate, shots could be heard and the youngsters and accompanying staff ran terrified back into the hospital. The woman who shot the video is praying out loud. I don’t know if the evacuation will continue or not. If not, the patients and staff are at risk of being bombed yet again.

The World Federation of Hemophilia had previously released a statement on the 14th October saying it was closely monitoring the situation,

Once we have established that providing help can be done in safety and in an effective manner, the WFH will act quickly. We will work with our national member organizations, with healthcare practitioners, and with other stakeholders from both communities to get help to where it is needed the most. The WFH Humanitarian Aid team is standing by to deliver products as soon as distribution channels open.

https://wfh.org/article/wfh-statement-on-the-israel-palestine-crisis/

It must now be abundanly clear that the situation in Gaza is desperate and without a full ceasefire it will be difficult if not impossible to deliver products. Only limited aid is getting into Gaza and remains at threat of attack with hospitals barely able to function.

Last night other hospitals were attacked and several civilians living in tents in hospital grounds were killed, one man can be seen screaming in a pool of blood with his leg blown off.

Gaza is now in total collapse, there is carpet bombing, hardly any food or water, bakeries bombed, no shelter as many homes are destroyed, the infrastructure is being obliterated. Thousands gather and are now living in hospital corridors as their homes no longer exist but as we have seen, not even a hospital is safe.

There is no fuel either. Dr Mads Gilbert (well known for his past work at Al Shifa hospital during past conflicts) reported that Al -Shifa’s one generator left operating is now running on cooking oil. Medical supplies have run out. There is no oxygen and other treatment facilities without fuel and electricity to keep things going. Children are in agony with 3^rd degree burns from the bombings, they have maggots crawling out of facial wounds, women are having caesareans without pain relief, amputations are carried out without anaesthetic. There are flies all over the hospital as with so many people and lack of water its impossible to keep good hygiene and sterility, operations are carried out on the floor as there are no beds left. Disease is breaking out, patients die thirsty. The families of doctors and journalists speaking out on the horrendous conditions are being targeted and their families killed, ambulances and first line responders are also being bombed. There is no heavy equipment to rescue those buried under the rubble of collapsed buildings.

The doctors and all hospital staff from surgeons to caretakers and first line responders continuing to provide what help they can in horrendous conditions are absolute heroes and I thank them for their humanity and outstanding service to their patients. When he could not use his car through lack of fuel, one doctor bought a bike to cycle to those in need and carried it over his head when chambering through the mountains of debris from bombed buildings to reach those who needed medication at home.

Gaza is experiencing collective punishment, war crimes, ethnic cleansing and genocide!

The situation for haemophiliacs is dire. They are in the midst of a conflict zone once again, they may have lost family members, their home, be suffering from injuries (if not already killed) and will now have very limited treatment or no treatment at all. MSF highted that many patients lost their medication under the rubble of homes targeted by Israel. An injury for a haemophiliac in this situation could be catastrophic without treatment as the bleeding won’t stop. Hospital services are increasingly bombed and it is not even safe to evacuate Al-Rantisi hospital.

Middle -East Eye reports,

Israeli army kills 260 Palestinians in 24 hours, death toll tops 11,000

‘If there is a hell on earth today, it’s name is northern Gaza’, says UN official

The last report from Medicins Sans Frontieres (Doctors Without Borders) stated,

The situation in Gaza continues to deteriorate. Updates from our staff at Al-Shifa hospital

Dr Mohammad Abu Mughaiseb, Deputy Medical Coordinator, shared that “since this morning, many MSF medical staff have stopped working in supported hospitals in #Gaza city because…

“Medical staff were terrified, trying to save their lives and their families. Some of them remain inside the facility, while others are leaving to the South of #Gaza along with displaced people“

Al-Shifa hospital is the main operational health facility in #Gaza city providing emergency and surgical care, with hundreds of patients and civilians inside.

We repeat: Attacks on medical facilities, ambulances, staff and patients MUST STOP!

I am extremely distressed at what I seeing and hearing. The attacks from Israel on hospitals are obscene, horrendous, inhumane and against all international law. The suffering is extreme and there is no time to lose.

“Since the 7th of October,

The World Health Organisation has verified over 250 attacks on health care in Gaza and the West Bank. Last week, WHO documented 5 attacks on 5 hospitals in one day in Gaza.”

In an update on Saturday 11th September, Al Jazeera reported an update on Al Shifa as follows:

‘This is the moment we have been warning the whole world of’

Al Jazeera has spoken to Gaza Deputy Health Minister Dr. Youssef Abu Alreesh, currently inside al-Shifa Hospital as it is takes heavy fire from Israeli forces.

Here are his translated comments:

• This is the moment we have been warning the whole world of, all generators are off, all power sources are out.
• We have 39 newborns in the incubators, those babies are fighting against death.
• No one is able to move around the compound, snipers are stationed all over the place in addition to the drones that target and kill any moving person.
• A few minutes ago one of the engineering team was hit by a sniper, he was hit in the neck and was paralysed and he’s now about to die.
• Part of the hospital was shelled and part of the building caught fire, we fear it will engulf the whole compound.
• A few families tried to leave but they were targeted; now they are lying dead outside the hospital. We cannot get to them.
• We are totally stranded, we are cut off from the outside world, and above all, we are left without any medical resources. We cannot even bury the dead.
• Ferocious gunfire can be heard within the vicinity of the hospital, the intensive care unit received a mortar shell a few minutes ago.
• Blood is everywhere, on the floor, we cannot even clean it.
• In the past, the Israeli killing machine was killing and this was conveyed on TV screens. Now they are perpetrating the same killing but no one is listening, no one is watching, the whole world is standing by.
• We are speaking with whatever is left of my phone battery, after that, we will be silent.

https://www.aljazeera.com/news/liveblog/2023/11/11/israel-hamas-war-live-pleas-for-help-as-israel-bombards-gaza-hospitals

Medecine Sans Frontieres issued the following update on the 11th November 2023,

Gaza: Patients and medical staff trapped in hospitals under fire

Gaza: Patients and medical staff trapped in hospitals under fire

I call on the UK Haemophilia Society to join the many NGOs, human rights groups, doctors, lawyers, journalists and make a public statement calling for a FULL CEASEFIRE NOW to protect the hospitals, staff and patients! I personally have called for a ceasefire since just after the first attacks on civilians. To remain silent is to be complicit with the genocidal actions of an apartheid state. Gazan doctors are calling out for our help and support so they in turn can continue assisting their patients. They are heroes chosing to stay and care for the sick and dying in the most horrendous conditions imagineable and we cannot let them down!

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”.

Peter Longstaff hold up his treatment cards showing what was recorded each time a haemophiliac took factor 8 treatment.

(Image, Grayson Archives)

The infection of Dame Anita Roddick with hepatitis C (who founded the Body Shop championing ethical standards in beauty products) has for many years been reported as a “transfusion” case during childbirth as opposed to infection via treatment with manufactured blood products such as factor concentrates. In the Sussex Express, a tribute from Prime Minister, Gordon Brown referred to Roddick, who died in 2007 of a brain haemorrhage and had cirrhosis of the liver, as “one of this country’s ‘true pioneers'”. He stated, “she campaigned for green issues for many years before it became fashionable to do so and inspired millions to the cause by bringing sustainable products to a mass market.”

Looking into the background of Roddick’s infection, back on the 15th February 2007, the Guardian reported,

Dame Anita Roddick, the founder of the Body Shop, revealed yesterday that she is carrying hepatitis C and has cirrhosis of the liver, one of the condition’s long-term effects. The 64-year-old entrepreneur said she had contracted hepatitis C through a blood transfusion while giving birth to her youngest daughter, Sam, in 1971.

So it was with some surprise that the author of this blog Carol Grayson heard a recent podcast with Caroline Wheeler author of the newly released book, Death in the Blood: The inside story of the NHS infected blood scandal, where it was suddenly alleged Roddick’s infection came from factor 8 concentrates.

The podcast can be heard here,

https://podfollow.com/1649210131/episode/90c07b9e7c62feed8af03d429feaf788bf739479/view

The Evening Standard reported,

Dame Anita contracted the disease from a transfusion of contaminated blood, 20 years before a national blood screening programme for the virus was introduced in 1991.

The article highlights Roddick saying,

“I am not angry, there was no blood screening programme for hepatitis C until 1991, but what bugs me is the Government’s conspicuous absence on this subject, they are not doing anything about it,”

This comment in itself is significant as it indicates Roddick was referring to a whole blood transfusion rather than blood products. She is referring to the date when blood was first tested for hepatitis C to avoid transmission of the virus via whole blood. With regard to those infected through factor concentrate treatment such as haemophiliacs with an inherited blood clotting disorder, they refer to the date when blood products were first heat treated to kill off hepatitis C and HIV and this was 1984. (The date is later in Scotland due to methods used which were not as effective.) Government and medical journal sources and numerous books have confirmed whole blood was never imported. It would have been too impractical to do so and had a much shorter shelf life than concentrates however factor concentrate treatment was imported from the US in large quantities with the first product licences granted in 1973.

The date given regarding Roddick’s infection is 1971. There are instances of haemophiliacs being given imported factor concentrates in 1972 including Grayson’s husband Peter Longstaff but this was usually on a “named patient basis” on application and for those on treatment trials. Longstaff attended a special school for children with disabilities named Lord Mayor Treloar College. He was on treatment trials in the early 1970s as his official records show and the college has a treatment centre at the school. Longstaff was infected with HIV, hepatitis B and C and exposed to variant CJD all through his treatment with factor 8 products. Roddick never mentioned having any clotting disorder. It is likely she was treated either at an Accident and Emergency Unit or a maternity hospital or unit. As she was treated for bleeding in relation to childbirth it is highly unlikely there would be time for a named patient basis application.

With regard to treatment with UK factor concentrates, the now disgraced, Department of Health Self Sufficiency Report 2006, deemed a “whitewash” and withdrawn on the evidence of this author, does mention some very early NHS factor concentrates being produced, “in the UK, NHS factor VIII concentrate was being produced as early as 1969, and its production rose steadily, almost doubling between 1976 and 1977” however haemophiliacs that were the biggest users of this treatment mostly remained on cryoprecipitate until 1973 and importation began, unless they were part of UK treatment trials on a named patient basis. The other treatments at that time were Fresh Frozen Plasma (FFP) or Cryoprecipitate from the UK. The 1971 treatment is the only treatment date referred to by Roddick herself when she discusses her infection.

This 1971 date is echoed by her daughter in an interview with BBC Newsnight where again she refers to a blood “transfusion”.

For the last few years, the mixing together of two entirely separate cases haemopohlia and whole blood in the media, and the Infected Blood Inquiry set up in 2018 to investigate how patients were infected have caused much confusion in people. The two groups campaigned separately for years as the Haemophilia Society doesn’t have a legal remit beyond inherited bleeding disorders and the Hepatitis C Trust covers whole blood cases. The circumstances and evidence around haemophilia and whole blood are very different. In some cases more recently the two have campaigned together but the joining together has increased the confusion and in some cases caused great damage due to the mix up of cases where for example people infected through whole blood transfusions have wrongly stated they had received US blood. This is highly distressing for haemophiliacs that actually did have factor concentrates and launched cases in the US in the early 2000s.

In 2017, I read interviews with Roddick’s daughter who appeared to be confusing the two. I did leave messages via the publications publishing her story to try to explain the differences. In one 2017 BBC Newsnight interview she can be heard discussing a blood transfusion responsible for her mother’s infection (not factor concentrate treatment) then when asked who is to blame naming the pharmaceutical companies. If Roddick had a whole blood transfusion, the blame would lay with authorities in the UK such as the National Blood Transfusion Service not pharma companies.

BBC Newsnight interview 31st July 2017

https://www.google.com/search?q=anita+roddick++hepatitis+c&sca_esv=567570395&rlz=1C1CHBF_en-GBGB947GB947&biw=1536&bih=715&tbm=vid&ei=vnYNZY-8FsabhbIP87OIyAo&ved=0ahUKEwiPk4mJi76BAxXGTUEAHfMZAqk4ChDh1QMIDQ&uact=5&oq=anita+roddick++hepatitis+c&gs_lp=Eg1nd3Mtd2l6LXZpZGVvIhphbml0YSByb2RkaWNrICBoZXBhdGl0aXMgYzIFEAAYogQyCBAAGIkFGKIEMgUQABiiBEjIJ1CnCFjvEnAAeACQAQCYAYIBoAGjBqoBAzcuM7gBA8gBAPgBAcICBBAhGAqIBgE&sclient=gws-wiz-video#fpstate=ive&vld=cid:568bf0e9,vid:0ADzQp-7ubo,st:0

If Roddick had factor concentrates that should be recorded in her medical or treatment records, this was necessary in case urgent product recalls needed to be carried out. There are a number of other potential risks related to manufactured treatment such as bacterial contaminant getting into a bottle which occasionally occurred. For haemophiliacs this recording was done on a green card system and included the following,

1. Name and Date of Birth of patient
2. Date and Time treatment is given
3. Name of product such as Hemofil
4. Name of company such as Baxter/Hyland
5. Batch Number plus HT if heat treated
6. Expiry Date of Treatment
7. Site and type of bleed such knee bleed into joint
8. Amount of factor concentrate given
9. Signed by person giving treatment
10. This was in case of an adverse clinical reaction, development of inhibitors, recall by the company

These batch number treatment details appear to have sometimes been kept separate to the medical records. If Roddick has been infected with factor 8 products presumably Wheeler, as an investigative journalist and author will have asked to see records of batch numbers to verify this or medical notes within Roddick’s records that specificly state the use of factor concentrates, what dosage, how many units etc. Concentrates come in small glass bottles containing a white powder (freeze died concentrates) and are mixed with sterile water for injection into a vein. Grayson has been through this process herself when asked to verify her husband’s treatment for journalists covering his story of infection.

Also it is important to state that the notes of a person with a lifelong medical condition such as a blood clotting disorder are usually kept for several years after death. Grayson has included a photo of her late husband displaying a photocopy of one of these treatment cards needed for litigation in the US so his treatment could be traced back to source (such as a US prison). Longstaff’s lawyers confirmed to the couple and the BBC that he had received factor concentrate products where a named HIV infected donor had sold his blood at Arkansas State Penitentiary. Longstaff received the treatment AFTER the prison plasma centre was closed down on the grounds of safety. This treatment was part of the “dumped” treatment second generation litigation. The pharmas accepted Longstaff’s case and others and an agreement was reached with a silence clause some years ago with the bulk of the responsibility put firmly at the feet of the UK government as having first line “duty of care” regarding treatment safety.

Stuart Mclean who became infected with hepatitis C after being wrongly misdiagnosed as a haemophiliac and treated with factor concentrates also wants to understand why it is suddenly being claimed Roddick had factor 8 when there has been no reference to this before. He also pointed to a 2017 video interview with Roddick’s daughter highlighting her mother’s infection via a blood transfusion. McLean noted a publication stating that Roddick’s youngest daughter Sam was born in Rustington in the UK, so she had been in the UK when giving birth (as opposed to being treated abroad.)

Sam Roddick was born on July 1, 1971 in Rustington, Sussex, England, UK

https://www.imdb.com/name/nm3045956/bio/

Mclean had requested confirmation of batch numbers via his wife, pointing out dates of when factor concentrates were first used in the UK which challenged the Wheeler podcast narrative and the statement claiming factor 8 was used. At that point Wheeler made it clear she wished to end the contact without providing any evidence.

Roddick dedicated her time to the Hepatitis C Trust, where she was a Patron and was an inspiration to others that were infected with hepatitis C through blood transfusion whilst pregnant and is mentioned in several statements to the Infected Blood Inquiry.

Roddick struck Grayson as a woman to whom truth and justice was very important on so many issues and felt a strong connection to many of her causes. Grayson was a regular customer at the Bodyshop and still misses the Woody Sandalwood oil which reminded her so much of trips to India. She feels for her daughter Sam and understands the importance of having the correct information and evidence with regard to the death of a loved one. Grayson lost her husband and brother in law and Roddick’s daughter lost her mum. The truth and establishing the correct evidence regarding how Roddick came to be infected with hepatitis C must surely be the goal of the family.

Grayson has questioned Wheeler before by email over her reporting, in one case where Grayson’s old evidence was being presented as “new” .When she made challenges to several publications, in a consortium, the word “new” was removed as incorrect. Evidence that had been published before well known to this author was clearly being rehashed. Grayson and her campaign colleague Colette Wintle were also concerned over recent Sunday feature articles on Contaminated Blood that were confusing and poorly written, An opinion shared by others reading the articles including one lawyer..

Anyone writing a book, article, dissertation must be prepared to be challenged, questioned and defend their work. It is part of the process of learning. Therefore as the Roddick case is in the public domain Grayson challenges Wheeler to provide evidence of her claims that Roddick had factor 8 concentrates. This doesn’t have to be put into the press but can be sent to Grayson privately or her lawyer Milners. Otherwise in the absence of evidence with the only information provided stating Roddick had a blood transfusion then that is all people can state regarding her case.

If Grayson is incorrect and batch numbers of factor 8 are provided as in the case of her own husband, she will hold up her hands and accept this. For Grayson this would mean Roddick’s case is considered with the correct evidence, she herself will have learnt something new and it would also show she was right about her concerns over reporting on contaminated blood in the media which in some cases has been abysmal with regard to the level of accuracy. So Caroline Wheeler are you prepared to accept this challenge and answer the questions of a widow who is part of the Contaminated Blood community and has never waivered from the path of seeking truth and justice…. over to you?

As Grayson writes this, she gets sight of Wheelers new book, Death in the Blood and there on page 25 it highlights, “the origin of the blood Roddick received is unknown”. Wheeler needs to do some explaining on how she came to the conclusion after so many years that Roddick had factor 8 and not a whole blood transfusion or is this another of Wheeler’s stories not properly researched?

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”.

Sir Brian Langstaff, Chair of the Infected Blood Inquiry who will deliver an Autumn Report

(Image via the Chronicle)

Long standing haemophilia campaigners Carol Grayson and Colette Wintle refuse to be side tracked by new books about to be published on the Contaminated Blood scandal. They believe attempts are being made to distract and undermine Sir Brian Langstaff’s forthcoming report to be released in 2024 from the Infected Blood Inquiry which began in 2018. Grayson, founder of Haemophilia Action UK, author of this blog stated, “we call it the Spring Report as opposed to the ‘final’ report as the Chair’s work is not fully complete until Sir Brian can report that his recommendations are actually carried out in full, that is the time to use the word “final”. This is reflected in our lawyers Milners and Sam Stein KC, SUBMISSIONS ON BEHALF OF THE CORE PARTICIPANTS REPRESENTED BY MILNERS SOLICITORS – AUGUST 2023

The campaigning duo are aware of two books about to be released on Contaminated Blood but highlight that their focus is on supporting Sir Brian as he has had full access to a huge array of documents and evidence, much of which was made available to Core Participants of the Inquiry on a website storage facility named Relativity. However, although substantial evidence has being released into the public domain from the Inquiry, lawyers have confirmed Relativity is not available to corporate media journalists which makes it nigh on impossible for them to call their books “definitive” accounts of the scandal and undermines the work of the Inquiry. Grayson and Wintle also note that these journalists are so disengaged from the victims that they write about within their publications that they haven’t even sent a courtesy copy of their books to the national Haemophilia Society to review or to long standing campaign groups.

Therefore, rather than be distracted by books from corporate media journalists that rehash old stories and have already displayed innaccuracies, ignorance and bias, Grayson and Wintle will also continue to focus on and support their lawyers August 2023 submission. Milners solicitors have provided an important and useful reference to the Bichard Inquiry child protection procedures following the murder of Jessica Chapman and Holly Wells which will hopefully be applied to the Infected Blood Inquiry.

The earlier Bichard report recognized the need for ONGOING monitoring PAST the release date on an Inquiry report. This can be applied to the Infected Blood Inquiry to ensure government is fully committed to acting SWIFTLY and EFFECTIVELY on the implementation of ALL the recommendations so carefully considered by Sir Brian Langstaff. The Chair has spent much time preparing what he believes is best for those at the heart of the Inquiry, haemophiliacs infected with HIV and hepatitis viruses after receiving factor concentrate blood products to treat their clotting disorder, their infected and affected partners and other family members. Much of the treatment used on haemophiliacs was imported from the US from “high risk” sources such as prisoners, sex workers, gay men, drug addicts and “skid-row donors”. Many haemophiliacs have since died and are still dying, one every 4 days. Milners are intent on working for the best possible outcome for their clients and recognize how aspects of the Bichard Inquiry would be valuable for the Infected Blood Inquiry. They state the following in their submission,

13. On 14 June 2004, the Bichard Inquiry reported to the Home Secretary. The published
    report contained, in its opening pages, a letter from Sir Michael Bichard to the Home
    Secretary submitting his report. In that letter he said: which, for ease of reference, is
    cited in full below:
    “…I am pleased to submit my report to you.
    I am grateful for the assurance you have given me that the report will be quickly
    published.
    I look forward to the Government’s response to my findings and to the
    recommendations which I make. As you know, I aim to reconvene my inquiry in six
    months’ time to assess progress on those recommendations which the Government
    chooses to accept. I am confident, as I acknowledge in my report, of the spirit in which
    my recommendations will be received and taken forward.”
14. Sir Michael was sent a progress report by the Government on 22 December 2004 and
    then provided an update report on 15 March 2005, in which he noted “…the progress
    made to date owes a great deal to the effectiveness of the programme management
    arrangements that were put in place, and I believe that it is essential that these are
    maintained for at least the next 12 months. I am also clear that the fact that this public
    review was known to be taking place has concentrated minds…”

Grayson and Wintle back their lawyers in calling for a similar progress report from government once Sir Brian has released his Spring Report. They feels its important and vital that he then follows up with an update related to the implementation of his Recommendations and that similar arrangements to Bichard can continue for at least 12 months following his report as an ongoing monitoring provision.

Grayson and Wintle reflect on their dismay at how the recommendations of a previous inquiry were blocked by government where there was no official ongoing monitoring past the release date. They spoke jointly stating the following,

We both gave evidence at the earlier Archer Inquiry in 2007 and witnessed 2 years later how the minds of government officials were certainly not concentrated on supporting victims. Government ignored the key recommendations of Lord Archer in his report. Ministers blatently told lies to ensure “compensation on a parity with Eire” was not paid to haemophilia victims by claiming the Eire case was different as the government there had accepted legal liability. This was completely untrue. Haemophiliacs in Eire were paid out on the grounds of “extraordinary suffering” WITHOUT government accepting legal liability and without going to court. Despite us both submitting key evidence to support a Judicial Review into how government came to this wrongful decision (which was WON), the Archer Inquiry by then was over, the Chair had officially stepped down and there was no further official monitoring. Haemophiliacs and their families were once again failed by the state. We recognize the importance of the Bichard Report in continuing to monitor after the Spring Report is presented to ensure the state does not try to wriggle out of its responsibilities yet again and abides by Sir Brian’s full recommendations.

Grayson and Wintle say they have little time to focus on the new books on the Contaminated Blood scandal but may carry out textual analysis at a later date in case of inaccuracies or defamation. They claim the authors have shown no genuine interest in working with the longest standing campaigners and appear somewhat intimidated by strong women that can’t be manipulated or dominated to suit the agenda of the authors rather than an accurate history and narrative of a scandal.

They pair said,

We have seen “taster articles” in Sunday newspapers in advance of the publication of these two new books and spotted inaccuracies immediately which gives us cause for concern. We have previously complained over recent years that these two authors have rehashed the work of long standing campaigners without referencing claiming old evidence is new, left out decades of campaigner history in a podcast and promoted a plagiarist.

We are not impressed by the quality or accuracy of reporting and have seen far better from regional journalists who take time to listen and understand important themes and really study the evidence so this does not bode well for the books. Some journalists appear intent on putting themselves at the heart of the investigation into the scandal and in doing so insult and betray those harmed by contaminated blood. These books are not our focus because if we so wished we are more than capable of writing our own, they forget, we ARE the experts with the decades of lived experience and despite everything we have suffered, we still managed to research, make documentaries with trusted media and receive awards for our work… we led the way, others sinply follow.

We feel its important to highlight the terrible decline in mainstream media ethics and standards. As campaigners, we are appalled at how some journalists now use their power to cancel people out or attack them. We have experienced this ourselves. We have also watched as innocent activists and members of political parties have been set up and defamed by the media, for example by the press promoting the weaponization of antisemitism to silence voices in support of Palestinian rights. How could we possibly trust or work with any journalist engaging in such dirty and unethical behaviour which is the opposite of everything we stand for.

We don’t even feel the need to name the new books as our loyalty is to Sir Brian’s work which is so much more relevant and important to us. It was very hard to trust at first but we have grown to respect Sir Brian. He has a well measured and empathetic approach and great insight into what he is studying in terms of evidence and a very astute mind. We feel he actually cares about those infected and affected and this is not something we have had from some of the corporate media that came into our lives. The Report from Sir Brian which was originally intended to be published in Autumn 2023 has been delayed by several months but this is in the interest of thoroughness and fairness to the many people criticised as they must have time to respond and we understand this.

However we give credit and thanks to some very committed national mainstream media journalists that regularly reported on our campaign efforts in the past such as James Meikle. We also thank the excellent regional journalists that engaged with us where we jointly run campaigns including the Northern Echo in the 1980s and the awarded Bad Blood campaign with the Newcastle Journal and Chronicle and other north-east based media. We also appreciate the ongoing collaboration with Sam Volpe. We value the work we did with Mags Gavan and BBC Newsnight team at the time of the Archer Inquiry nominated for a Royal Television Society award. Thanks also go to Meridian that made the Blood Brothers documentary instigated by Colette featuring her and husband and boys from Lord Mayor Treloar College which again was given an award. In addition regional media in Kent and Worcester that worked with Colette.

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 Peter Longstaff (deceased) who received regular monthly payments from the Macfarlane Trust and wife Carol Anne Grayson who now receives regular monthly payments as a bereaved widow from EIBSS.

(Image Grayson /Journal Archives)

The following Freedom of Information request has been submitted today (25th August, 2023) to the Department of Health and Social Care

To whom it may concern

Contaminated Blood/Haemophilia HIV monthly payments “for life”

I am writing with regard to haemophiliacs infected with HIV through contaminated blood products, their infected partners and infected and affected bereaved partners who were registered with the Macfarlane Trust. For many years they have received regular monthly payments. These are now paid through the English Infected Blood Support Scheme (EIBSS) since the Macfarlane Trust was scrapped.

Some years ago, as a committed member of the Macfarlane Trust Joint Partnership Group, following a meeting with the Dept of Health, myself and other beneficiaries were informed in person at one of these meetings that,

“the regular monthly payments will continue until the last infected and affected person remains alive.”

This gave huge reassurance to concerned registrants that had feared they might stop and I conveyed this to my legal team of that time.

As part of an MFT newsletter sent to registrants, (which I have in my files at home, also submitted to my current lawyers) the following was stated by Martin Harvey, CEO,

“Part of the restructuring process arising from the Long Term Review includes addressing the current rigid system that surrounds regular payments. From the outset I want to make sure the following message gets through, regarding the rumour suggesting the Trust is going to cut or cut out regular payments. This information is incorrect and just not true, so I hope that is now clear.”

The commitment to regular monthly payments “for life” was repeated over the years to registrants on the schemes both infected and affected.

The scrapping of the Macfarlane Trust and transfer to EIBSS in 2018 has caused huge anxiety in that registrants, many in poor physical health and suffering from depression and PTSD fear they might be betrayed once again by government and this commitment given to those with HIV, their infected partners and infected and affected bereaved partners that monthly payments would continue “for life” would be reneged upon. What did not help matters was that the most committed registrants that had given so much time and energy to contributing to the Joint Partnership Group were deliberately left out of the meeting with Gerard Hennessy, the government appointed mediator to discuss registrants concerns over the scrapping of Macfarlane and 4 other trusts. Nor were they sent questionnaires to elicit their opinions on the move until AFTER the closing date for submissions. This flew in the face of government statements that all registrants, relevant persons had been consulted and caused great hurt and distress to those haemophiliacs and their families that were cancelled out.

1. Under Freedom of Information, I ask the government what discussions and action has been taken by government officials regarding ensuring regular monthly payments for infected and affected formerly under the Macfarlane Trust now EIBSS continue “for life”?

2. What action does the government intend to take to write to former Macfarlane Trust registrants through EIBBS as a matter of urgency to reassure sick and dying haemophiliacs, infected partners and infected and affected bereaved partners that this commitment will be fully upheld as promised?

3. Will government ensure that this commitment is also equally extended to haemophiliacs, their infected partners and infected and affected bereaved partners receiving monthly payments for hepatitis C through EIBSS after receiving contaminated blood products and that they also receive written notification to reassure them monthly payments are for life?

A copy of this letter will be sent to Sir Brian Langstaff, Chair of the Infected Blood Inquiry, who is very much aware of the importance of keeping these monthly payments “for life” as part of lawyers submissions representing core participants and which he was urged to adopt as one of his recommendations. Further copies will be sent to the Haemophilia Society who also fully support this, my legal team, fellow campaigners and my MP Nick Brown.

I look forward to your response.

With thanks

Yours sincerely

Carol Anne Grayson

Contact details supplied

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 and her husband Peter Longstaff who was killed by the state after receiving contaminated blood. Grayson alleges Terrence Higgins Trust are “haemophobic” presenting a very selective narrative of haemophilia history

(Image Grayson archives)

As a result of haemophiliacs infected with HIV and hepatitis viruses during the 1970s and 80s initiating a legal case against the Department of Health and other authorities, in what was to end in an out of court settlement in 1991, the Macfarlane Trust was set up to provide financial support to haemophiliacs infected with HIV and their families. Haemophiliacs are a distinct patient group recognised as having an inherited bleeding disorder. They became infected through the use of factor concentrate treatment used to help their blood clot. This was often imported from the US where “high- risk” donors such as homosexuals, prisoners, drug addicts, sex workers and “skid row donors” were targeted for their plasma which was sold to international pharmaceutical companies. It only took one infected donor in a plasma pool to cause an infection in a haemophiliac recipient and it is now known that plasma pool sizes were far higher in the US and could reach as high as 400,000 donors.

Haemophiliacs were never compensated in 1991, incriminating documents only seen years later were kept out of court and litigants received an “ex- gratia” payment which differed in amount depending if a haemophiliac was married or single. To add insult to injury, haemophiliacs were made to sign a controversial Undertaking, nicknamed the “waiver” which meant most haemophiliacs signed away their rights not knowing they were infected with hepatitis C as test results were withheld until after they signed. Sometimes patients would not be notified until years later as was the case of this author Carol Anne Grayson’s husband, Peter Longstaff, a severe haemophiliac with less than 1% clotting factor infected with HIV and hepatitis viruses. In a legal opinion sought by Longstaff from the then Head of the Bar Association, Matt Kelly QC, he commented on evidence submitted by the couple direct from the 1991 litigation papers stating,

At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”

Kelly concludes,

I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.

Haemophiliacs engaging with the Macfarlane Trust have experienced many challenges over the years and there were concerns at how registrants were viewed and treated by those running the organization. It was sometimes a fraught relationship for beneficiaries and rarely easy. Haemophiliacs fought for improvements in both financial and other support but what they didn’t expect was that a Trust they were assured by their lawyers decades ago was set up “for life” would one day be scrapped. This came to a head in 2018 when Macfarlane was closed down and monies from the Trust were transferred to the UK’s biggest sexual health charity, the Terrence Higgins Trust (THT). This was accomplished by deliberately excluding the longest standing campaigners from a meeting with a government mediator to discuss any concerns and some haemophiliacs and families did not receive questionnaires to elicit their views until AFTER the closing date. This transfer far from being seen as an improvement is now regarded by those infected known as “primary beneficiaries” and directly affected partners as an absolute disaster. THT website reflects their lack of understanding and selective approach to the haemophilia community. They state,

What is haemophilia?

Put simply, people with haemophilia bleed for longer if they get a cut. It’s an inherited (genetic) condition which mainly affects men, although women can be carriers (meaning they can pass it on to their sons) and can have a mild form of the condition.

THT website definition of haemophilia continues a decades long misogynistic attitude which fails to recognize that women diagnosed as haemophiliacs, can sometimes bleed severely and can bleed in different ways to men due to their biological identity. Also that many of the most problematic bleeds for haemophiliacs are internal causing joint damage, THT state,

Here is how THT represent the infection of haemophiliacs with HIV,

How are haemophilia and HIV connected?

During the late 1970s and early 1980s, haemophilia treatments were made from donated blood. Some of this blood came from people who had HIV or other blood-borne viruses, such as hepatitis C, so thousands of people with haemophilia (or who needed transfusions for other reasons) were infected. This is often referred to as ‘the blood scandal’.

Blood is now screened and factors are heat treated.

There is no mention of “high-risk donors” being used in the manufacture of factor concentrates.

THT continues,

Many haemophiliacs did not know that they had been infected until years later – this led to many partners and children also becoming infected. A long battle began with the UK government in a bid to secure compensation.

https://www.tht.org.uk/hiv-and-sexual-health/living-hiv-long-term/haemophilia-and-hiv#:~:text=In%20the%201970s%20and%201980s%20around%205%2C000%20people%20with%20haemophilia,than%20250%20are%20still%20alive.

There is no mention of that fact that positive HIV/HCV test results were deliberately withheld from haemophiliacs sometimes for years. This is why haemophiliacs that were subjected to experimentation and suffered violations regarding the Nuremberg Code highlight the importance of pre and post test HIV and HCV counselling. Haemophiliacs question whether THT has now abandoned this in their emphasis on opt out counselling through A and E departments? Nor is their mention that lawyers were alleging gross negligence and government failures regarding “duty of care”. There is no mention either of the long fight for improved health care, passporting regarding disability benefits for those infected by the state or the need for specialist counselling as well as compensation by counsellors that understand the needs of a very specific patient group and know their history.

Initially, some haemophiliacs tried to work with THT but soon found staff were often unwilling to listen and appreciate their life experience and viewpoint and their history which was different to that of many in the gay community that THT were initially set up to represent. The Achilles heel for haemophiliacs in their obtaining the full backing of THT was what appeared to be an underlying resentment of the fact that haemophiliacs had been infected BY the state supplying infected blood products and not through sexual practice or sharing needles. This was translated into what some viewed as haemophiliacs been seen as an “innocent” party to their infection whilst in their eyes others were judged regarding routes of infection. The fact of how haemophiliacs acquired their multiple infections is quite simply a fact and one on which litigation has been based plus the setting up of a public inquiry to investigate what went wrong. The Inquiry includes looking at whole blood cases and thalassaemia also infected through blood transmission. This author alleges that it is the route of infection for haemophiliacs that has created a “conflict of interest” for THT and long held resentments which have now descended into toxic “punishment” of those infected and directly affected within the Macfarlane haemophilia community.

Grayson argues that this negative attitude is a form of “haemophobia”. The definition of haemophobia is “an extreme irrational fear of blood”. In the case of THT this is not necessarily the fear of blood in the physical form but rather the narrative of blood infection as it relates to haemophiliacs that must be controlled, ignored and cancelled out.

In the history of how haemophiliacs came to be infected is the harsh reality of how the blood of gay men was sold to pharmaceutical companies to be used in the manufacture of factor concentrates. In fact, US legal depositions obtained through the instruction of Grayson to her UK lawyers, Milners, shows that gay men were actively targeted for their “hepatitis rich blood” used in vaccine and other research and the surplus was added to the factor concentrate pools. Plasma wagons would be parked outside the gay bath houses of San Francisco as AIDS was emerging. Gay men were reluctant to stop donating as this was viewed as a sign of equal rights with straight donors. In addition, some closet gay men used the selling of their blood as a sign as “proof” to their families that they were “straight” so selling their blood had another useful purpose and overcame the need for safety first.

In the early 2000s, Grayson had contact with journalist Paul Cunningham of RTE who covered the Lindsay Tribunal and was awarded for his reporting on how haemophiliacs in Eire came to be infected through contaminated blood products. During this period, Grayson had been sent a collection of gay donor advertisements from a friend in Canada an advocate for infected haemophiliacs. Cunningham was interested to checking this out further in the making of his documentary titled, Bad Blood and once concluded, he received an Irish Film and Television Award.

As part of his investigations, Cunningham travelled to the US to investigate plasma collection at Louisiana State Penitentiary where male prisoners often practised unprotected sex with other inmates, some gay or bisexual and some due to the absence of female sexual partners. Grayson wrote to Inquiry investigators highlighting the importance of Cunningham giving evidence and he was duly contacted officially to provide a testimony. Under the heading Targeting Gay Men As Donors, Cunningham states,

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.

He added,

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”.

Since THT have taken over the Macfarlane monies this is a part of haemophiliacs’ history which THT do not discuss. Instead, the current CEO Richard Angell has promoted gay men donating today but without any public acknowledgement of how gay men donating in the past led to many deaths within the haemophilia community and the trauma experienced by those still living now having to go to THT for money for counselling. Ironically changes to UK blood donation were made recently to include gay donors invited to discussion groups on how this should happen were carried out without any discussion with infected haemophiliacs to debate this openly and allay any fears they may have had, it was all about promotion of gay rights, haemophiliacs were not even a consideration regarding any potential safety concerns.

Once THT took over the Macfarlane Trust monies, they increasingly failed to listen to those infected and began to talk for them without understanding their history, specific needs and their complicated and hugely traumatising life experience. A letter was sent in 2021 from the Haemophilia Society and several campaign groups to request that they stop acting as the voice of the haemophilia community but to no avail. Grayson alleges this form of haemophobia from THT is about power and control and reducing the narrative of the Contaminated Blood scandal with its dark history of experimentation and human rights abuses.

Since then THT have announced their funding of Jason Evans, Factor 8 Group, the son of a haemophiliac who died from HIV who appeared for the first time in the media around 2017 promoting FAKE timelines of discovery of documents and distorting haemophilia history. This goes against the principle of fighting for truth and justice and plays down long standing haemophilia campaigners suffering of having incriminating evidence blocked from the 1990s onwards, ignored by government officials and “inadvertently trashed by junior civil servants”.

The question is, why would THT want a FALSE history presented, that would cause yet more trauma to victims, what is in it for them and why would they wish to SUPPRESS the truth? Is this haemophobia raising its ugly head and ensuring the TRUE history is not presented by THT. Evans who briefly highlighted the gay donor ads 2 decades AFTER Grayson first received hers is now silent on their significance and fails to acknowledge that campaigners highlighted this reality all those years ago. Instead, he places himself at the centre of the blood narrative in the media promoting LIES which are then published by unethical journalists whether by accident or design.

Questions to THT from beneficiaries of the scrapped Macfarlane Trust are delayed or totally ignored. This includes how THT are spending the transferred Macfarlane monies, the Tender process for research funding, how much Evans is being funded and what research he is carrying out. The only thing THT will provide money for is counselling which some beneficiaries can get for free anyway, yet THT will provide counselling or nothing. Attempts to seek funding for anything else is swiftly declined.

There is now a battle for the truth on social media. Haemophiliac Andrew Evans infected with HIV as a young boy has begun a daily tweet repeating the same questions each day, with Grayson joining him with her own questions. Evans tweeted,

Dear @THTorguk and @Factor8Campaign, Please explain in detail your financial relationship. Also,

@JasonEvansF8 please explain in detail how you are spending money given to you from the former MFT via @THTorguk and private donations. Thank you.

Followed by,

Day 17. No further along. No acknowledgement, certainly no response. No respect. No dignity. No accountability. Just contempt.

Postive- WomenOrg Frankie, an anonymous account from a woman infected via her haemophiliac partner tweeted,

Contempt, disrespectful clone of MFT. You continue to cause further damage by denying our right to understand how the MFT money is spent and what exactly are you giving funds to

@Factor8Campaign for. Appalling behaviour from both of you

@bloodinquiry

Another account by the name of Positive Woman drew attention to issues over failure to minute meetings and how funds are being spent.

Primary beneficiaries in first User Group insisted minutes were taken as had been the case for Partnership Group of former Macfarlane Trust. We were closed down. Cancelled out. Why?

and

We are beneficiaries of a restricted fund. Primary Beneficiary term for infected which

@THTorguk refuse to recognise. They push use of the term Service User to invalidate our right as all beneficiaries to restricted funds.

@bloodinquiry

Mark Anthony Ward, another haemophiliac infected as a child also known as Haemosexual presenting the rights of gay men as a gay man himself tweeted,

The UK’s biggest #HIV charity

@THTorguk has continued to ignore legitimate concerns from a small vulnerable group of HIV+ people which they ignored for 40+ years Is that compassion or abuse?

Grayson draws attention to the failure of THT to pay her the back money she is owed due to a historic mistake to her monthly widow’s allowance where they wrongly means tested the disability part of her state benefits. She has received an apology and acknowledgement from the English Infected Blood Support Scheme (EIBSS) set up in 2018 who paid her some back money from that date. However, they were unable to pay any before 2018 and the Cabinet Office referred Grayson to THT for the money owed before that date. Grayson said,

I allege THT are practising a haemophobic agenda against myself and others. Their attitude towards me is cruel, callous and comtemptuous. If they can afford to fund a non- infected, non- haemophiliac plagiarist they can surely afford to pay back money owed to the widow of a Primary Beneficiary who was an infected haemophiliac. They are punishing me by withholding what I am owed through a mistake where I am the injured party after all I have suffered already. I am aware they have helped other partners/widows of haemophiliacs, writing off loans so why am I being denied help? I was left in a very vulnerable financial position for years forced into debt due to a mistake by an official body meant to support me. This caused immense stress and made my depression and PTSD worsen. Although THT write to government claiming to speak for the rights of the haemophilia community and calling for compensation, their actions towards myself and others, cancelling out, blocking and silencing infected and affected and withholding back money do not match their words.

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”.

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.

https://www.independent.co.uk/news/world/europe/french-ministers-cover-their-tracks-on-infected-blood-1535267.html

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

https://global.oup.com/academic/product/the-social-production-of-crisis-9780197682487?cc=gb&lang=en&

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 Grayson was awarded the ESRC Michael Young Prize for her research dissertation on Contaminated Blood written in 2005/6

(Image Grayson Archives)

The following email dated 17th January, 2023 was sent to Ian Green (then) CEO of the Terrence Higgins Trust regarding the announcement that the sexual health charity was funding Jason Evans, Factor 8 Group in a research capacity. Monies from the Macfarlane Trust set up by government to provide financial and other support to haemophiliac beneficiaries and partners infected with HIV, affected partners and bereaved families were transferred to THT when the Trust was closed down in 2018. This was done however without consulting all registrants and the longest standing campaigners, some that had been part of the Joint Partnership Group were deliberately kept out of a meeting with a government mediator to elicit their thoughts and opinions. A questionnaire produced for the same purpose was not received by some registrants until AFTER the closing date of submission. This caused huge distress and anger within the infected and affected haemophilia community.

Richard Angell, (current) CEO was allegedly overheard by a person within the Haemophilia Society some time back before he entered this role to have stated, that THT had “found a way to fund Jason”. This raised questions as to what was the Tender process and whether other candidates were given equal consideration for funding? This was particularly concerning given Evans had repeatedly appeared in the media claiming he had discovered documents from 2017 onwards that were discovered and presented by the author of this blog Carol Anne Grayson to government 2 decades ago. Such claims distort the Timeline of who knew what and when which is key to achieving truth and justice. Numerous stories that Grayson and her late husband Peter (a haemophiliac infected with HIV and hepatitis viruses who died in 2005) had initiated with the press based on their research that were published years ago and were exclusive to the couple were also plagiarised and rehashed.

To date, the Tender Process has not been sent to campaigners, there has been no explanation of what research is being carried out or how much Jason Evans and Factor 8 Group are being funded and the questions below remain unanswered.

Dear Ian,

In relation to Terrence Higgins Trust funding of Jason Evans to carry out research or campaigning on Haemophilia/Contaminated Blood, I would be grateful if you could assist me with the following, please provide :-

1. Any published and peer reviewed research on Contaminated Blood carried out by Jason Evans prior to 1^st January 2015

2. Any published research on Contaminated Blood by Jason Evans that has passed an ethics committee prior to January 1^st 2015

3. Any published research on Contaminated Blood by Jason Evans that have won awards prior to January 1^st 2015

4. Any questionnaires on Contaminated Blood devised by Jason Evans that have passed an ethics committee prior to January 1^st 2015

5. Any press articles where Jason Evans is interviewed as a campaigner on Contaminated Blood prior to January 1^st 2015

6. Any awarded media campaigns on Contaminated Blood where Jason Evans  was a joint partner prior to January 1^st 2015

7. Any awarded documentaries on Contaminated Blood where Jason Evans participated as a researcher prior to January 1^st 2015

8. Any dissertations published on Contaminated Blood by Jason Evans prior to January 1^st 2015

9. Any petitions on Contaminated Blood raised by Jason Evans prior to January 1^st 2015

10. Any Hansard publication on Contaminated Blood where Jason Evans is mentioned prior to January 1^st 2015

11. Any printed or digitalized book on Contaminated Blood where Jason Evans is mentioned prior to January 1^st 2015

12. Any campaign group on Contaminated Blood that Jason Evans set up prior to January 1^st 2015

13. Any award related to any aspect of Contaminated Blood won by Jason Evans prior to January 1^st 2015

14. Any TV or radio interview on Contaminated Blood which features or is presented by Jason Evans prior to January 1^st 2015

15. Any podcast on Contaminated Blood featuring or presented by Jason Evans prior to January 1^st 2015

I would be grateful if you could reply within the 20 days stated in THT earlier email.

With thanks

Yours sincerely

Carol Grayson

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”.

Peter Longstaff and his younger brother Stephen as children rescuing birds from an oil slick on the beach. Both went on to die as a result of receiving contaminated blood

(Image via Hartlepool Mail)

Over the years author of this blog, haemophilia campaigner, Carol Anne Grayson, sent a number of letters and emails on the Contaminated Blood scandal to Jeremy Hunt when he was Secretary of State for Health. Grayson’s husband Pete and brother in law Stephen were infected with HIV and hepatitis viruses during the 1970s and 80s through imported US factor concentrate treatment for their inherited bleeding disorder, haemophilia. Much of this treatment came from high risk donors such as prisonersm gay men, drug addicts, sex workers and skid row donors with plasma pools reaching as high as 400,000 donors far higher than was originally thought.

The boys attended Lord Mayor Treloars College for children with disabilities as boarders at different periods and were part of experimental treatment trials. Both have since died as a result of receiving contaminated blood, Stephen in 1986 and Pete in 2005.

After Lord Hunt received the following letter dated 26th January 2016 via Grayson’s MP Nick Brown, Grayson noticed a distinct change in attitude from Hunt who had for some time been resistant to considering a public inquiry. Documents later released at the request of Hunt to Grayson showed that he went on to write to Theresa May to call for a public inquiry after discussing it with his department. On the 11th July, 2017, May announced that government was finally willing to to hold a public inquiry which has become the Infected Blood Inquiry chaired by Sir Brian Langstaff and which commenced in 2018.

RE: Haemophilia Holocaust… a Nazi- style system which abused haemophiliacs from the cradle to the grave

Dear Jeremy Hunt,

I am writing to you with some specific and important questions to which I require answers. You may or may not be aware that as well as a widow I am also a researcher and critiqued the government’s report “Self-Sufficiency in Blood Products in England and Wales A Chronology from 1973 to 1991” for which I received the Economic and Social Research Council (ESRC award) in the name of Sir Michael Young. The DOH report (from unknown authors) was alleged to be the definitive report, yet it is greatly lacking with much evidence missing or excluded from the research. I was fortunately able to obtain copies of some of the so called missing or shredded documents to challenge some of the findings. Link to report below,

http://webarchive.nationalarchives.gov.uk/20070402085944/dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4130917

My attention is drawn to the fact that although the report chronology begins in 1973 there is nothing of significance on the first treatment trials carried out on the “captive” boys at Lord Mayor Treloar School, Alton in Hampshire (a so called centre of excellence) in the 1970s who were put on initial trials of the newly imported US factor concentrates. My late husband was one of those boys.

Again you may or may not be aware that the 70s was a dark period for the school with a culture of extreme bullying of children with disabilities or “cripples” as they were called back then. Not only this, there was a culture of physical and sexual abuse. This was confirmed when my husband received a letter not long after we first got together from a man linked to the school on his deathbed who wrote to my husband (letter was forwarded to him) saying how sorry he was for not speaking up at the time. (Speaking up by some resulted in changes for the better by the 1980s but it was too late for some). Within this setting the factor concentrate treatment trials took place, the boys were the guinea pigs for the Department of Health whose policies introduced the treatment, the pharmaceutical companies who provided the treatment and the doctors who carried out the trials.

I would remind you that US factor concentrates were sourced from tortured US prisoners at Arkansas, Louisiana and other state prisons, who were often known drug users, practising unsafe anal sex and high risk for viral infections. In addition there were multiple other safety violations recorded. Treatment batch numbers were traced back by lawyers to infected donors. The first hepatitis outbreaks soon hit the school as pupils/patients were used to cryoprecipitate from a handful of unpaid donors not large plasma pools of paid prisoners of up to 50,000 which included gay donors from the San Francisco “bath houses” where they also used to collect plasma.

Please tell me the name of the medico-ethics committee that allowed treatment trials at the school (and any other places in the UK that participated in early trials) and release the documentation which of course is essential and a legal requirement for treatment trials.

Please inform me point by point how the DOH, doctors, pharmaceutical companies ensured all 10 points of the Nuremberg were strictly adhered to and release the relevant paperwork from that era. The code dates back to 1948.

Who passed the treatment trials, followed up the boys and took action and notification when serious hepatitis outbreaks occurred at the school?

How many boys were on the trials, who was responsible for consent forms, what were parents and boys told?

This is essential given your previous letter detailing the paternalistic culture of the day. A paternalistic culture is very different to rules and regulations adhering to the Nuremberg Code. I would remind you I went to Auschwitz as part of my research to compare experiments.

Please refer to Nuremberg Code by name in your letter as the last one avoided doing so. I hope this was an oversight rather than deliberate. Please also read the following article on treatment at Lord Mayor Treloar.

“Justice fight for pupils of Treloar College who were killed by tainted blood”

http://www.express.co.uk/news/uk/592179/blood-hiv-treloar-college-scam-nhs-medicine-positive-hiv

Here is a comment from a public thread on the school I have removed the name of the persons,

Boy 1

“Yes it was disgusting what went on down there. I can give you plenty of instances where they had no regard for pupils feelings. The art teacher who pointed out to all my “classmates” that I had a harelip and therefore was “uneven” much to their laughter. The female member of staf who grabbed me by the throat and slammed my head against a wall over a second hand account of an arguement I’d had with another boy. The housemaster who did not inform my parents that another boy had attacked me so viciously that my glasses cut my ear and then went round telling everyone else I hadnt told my Father. The science teacher who just turned his nose up at all the boys with some sarcastic remark.. The teacher who mimicked a minor speech defect I had untill half the school was doing it..I could go on but I think you get the picture.

Also, when I started at LMTC although the haemophiliacs were the largest single group this was also the time that the kids affected by thalidomide were at secondary school age and some of them went through the school in my year. Some had artificial legs, others were in wheelchairs. In those days artificial limbs were not nearly as sophisticated or strong. I recall one lad  “K” as being in my class . He had the flipper type arms and legs which were commonly associated with their tragedy. 

One day in class..(french to be precise), the eccentric teacher of the time hit  “K” around the head.(jokingly as I recall) with an ancient and heavy book called a larousse. What this was i don’t know but when the blow landed “K” seemed to stagger slightly and then with a snap and a crash, one of his artificial legs broke and he ended up sat there on the floor with legs and trousers disconnected and sat there scratching his head with one of his two fingers and wearing a most bemused expression on his face. He took it in good heart however and someone took him back to the house in a wheelchair for him to put a spare leg on.”

They had obviously not learnt any lessons from the 1975/76 outbreak of hep b when they didnt tell us anything then either. Just made all affected boys walk up to the canteen staff and hand over their own plates with a red spot on them..the plates that is.

I do recall one of my few friends there..A…… ..waking up jaundiced and ill in the bed next to me one morning with that..the day of one of those degrading school medicals.

Andrew died in 1996..

Boy 2

“Hi I am finding your stories whilst at Treloar’s very smiliar to my own having gone to a day school for people with disabilities.  Some of the things that happened were horrendous and as for bullying, well unfortunately I was the main target.  Once I was shuffed in one of those half moon metal waste bins that used to be fixed on the walls.  It was mainly the toilet was, bum would go in first and arms and legs folded up.  I remember sitting there patiently waiting for someone to find me all during assembly – I was a quiet kid and was intimidated alot, so if someone said don’t make a noise, you will get it worse, I would be quiet as a mouse.  My nickname at school was penquin because of the way I walked.”

Boy 3

“But yes your completely right about the bulying that went on Treloars & yes it was still happening through my school days there. Sometimes it’s eats you up but in balance were away from there now & I have (as I hope you may have) made some amazing friendships (that I’ll treasure forever) from there that continue to this day. 

In all the wrongs & rights of Treloars in General (which is a vast & complicated subject) I whole heartedly agree that they should have recognised the bullying problem and dealt with (esp  by some of  the staff  as well as the pupils). There was pretty messed up guys at that place & that also made life quite difficult looking back.

 An acknowledgement that Treloars handled that side of things very badly should also presented but I doubt  this will ever happen.I’m also aware that the bullying when you were there was far more serious & quite soul destroying, as I knew some guys who were there pre 82′.”

Boy 4

“So many sad sad stories where peoples lives have been destroyed, This is disgusting and should not have happened but the fact of the matter is that it has, innocent people have died through no fault of their own, those people being my friends and yours and it is just not acceptable, it really does make me so agitated. While at treloars i developed Hep C along with other haemos, again innocent people suffering through no fault of their own.”

Boy 5

“Dear All,

              can only assure you of my own particular case which was as follows.

              I had never seen or heard of FactorV111 let alone used it before Lord Mayor Treloar College. My parents did not know of it and were certainly never asked for consent.”

(Writes poem about his experience)

Is it just me or am i mistaken,

               words seem to lose meaning or get lost in translation.

               Take the word ”concentrate,” is it the same as ”concentration?”

               ”college” or ”camp,” ”experiments,” ”non consent” or ”legislation.”

               Call it a ”camp” or call it a ”college,”

               experiments WERE done without our knowledge.

I note Andy Burnham former Secretary of State for Health referred to “negligence” earlier this year in parliament in relation to contamination of haemophiliacs with HIV/HCV and Andrew Gwynn also referred to “negligence of public bodies” in the House of Commons last week, both on video. Prior to this at the time of Archer privately funded Inquiry whose recommendations you largely ignored, I was approached by a key advisor to the government admitting his “negligence” with respect to decisions over US treatment. Lawyers used to tell us, “negligence means compensation” not an increase in an ex-gratia payment.

You now have an opportunity to do the right thing and compensate properly as Eire did… except they never used the word negligence so politicians here have actually gone one step further. I also have a document written by a lawyer for haemophiliacs saying the chances of winning for those who had taken US factor concentrates had significantly improved (this was just prior HIV settlement) and was never shown to haemophiliacs who were signing the next day … and this was before we started working on the Nuremberg Code. The lawyers said he could no longer lie to his clients and it appeared some deal was being done to keep the government out of court!

Regarding payments…tell me what would an average pay –out be for vaccine damage for example? I will check it out. I will tell this you, a widow whose husband was infected with vCJD and later died received £3.2 million in compensation… I don’t understand why haemophiliacs and their families are given so minute a payment compared to this?

If you really don’t know what has gone on with regard to the history of contamination in our community (as Andy Burnham said he didn’t when he took office in health due to position of civil servants) then I suggest you meet with someone who has researched this issue in great detail …me perhaps with a campaign colleague and the Chair of the Haemophilia Society so we can discuss the matters arising.

Violating the Nuremberg Code on not one but 10 points is a very serious issue for a government or did the UK abandon both its promise to uphold this and all human rights for haemophiliacs simply because they thought they would get away with it… that vulnerable people would never fight back?

Could you refer me to the specific part of the Nuremberg Code that said it was OK to bleed, sick dying, virally infected and even tortured prisoners because we have evidence of this due to the support of prisoner’s families in the US. To collude and profit from torture is surely a criminal offence!

Let’s face it, “the worst medical treatment in the history of the NHS” and no public inquiry from government when far lesser matters have warranted a full investigation… quite bizarre!

I look forward to your response. I want to hear about the legal and ethical aspects of the first trials in the UK not about “paternalistic cultures” which actually DON’T feature in the Nuremberg Code guidelines!

Yours sincerely

Carol Anne Grayson

The article on the release of documents at the request of Hunt to Grayson can be read on the following link from the Newcastle Chronicle by Sam Volpe dated 30th March, 2022,

Government changed its mind on Infected Blood Inquiry ‘because of pressure from campaigners’

Documents released to a Jesmond campaigner show why the Infected Blood Inquiry was announced on July 11 2017 – and explain the reasons which saw the Government change its mind

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-inquiry-documents-revealed-23536730

Hunt later went on to give evidence to the Inquiry as highlighted in this BBC article from 27th July, 2022

Jeremy Hunt calls contaminated-blood scandal a huge failing of democracy

https://www.bbc.co.uk/news/health-62325578

Today, 28th July 2023, Hunt will again be called to the Inquiry in his role as Chancellor with haemophilia campaigners calling for Hunt to implement the full recomendations on compensation as written by Sir Brian Langstaff.

Infected blood inquiry: Jeremy Hunt to be questioned in worst treatment disaster in history of NHS

He will be quizzed over much-delayed compensation scheme for thousands of victims

https://www.independent.co.uk/news/uk/politics/jeremy-hunt-nhs-infected-blood-inquiry-b2383447.html

Haemophiliacs and their families await to hear whether Hunt will respond in an empathetic way to what Lord Winston described as “the worst medical treatment disaster in the history of the NHS” now considered a major scandal and finally deliver.

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”.