Contaminated Blood: Dyfed Powys police failed to investigate allegations made 2 decades ago of experimentation on schoolboys at Treloar College

Haemophiliac Peter Longstaff top row, second from the right was the subject of alleged experimentation at Treloar College in the early 1970s

In the year 2000, Peter Longstaff and his partner Carol Anne Grayson who set up campaign group Haemophilia Action UK made complaints to their local police in Newcastle, northern England, regarding a number of allegations in relation to Pete and his younger brother Stephen becoming infected with HIV and hepatitis viruses. Haemophiliacs are victims of what is now known as the Contaminated Blood scandal, which Lord Winston described as “the worst medical treatment disaster in the history of the NHS.” Some of the allegations related to medical treatment received as part of unethical trials whilst the boys were pupils at Lord Mayor Treloar College in Hampshire, a boarding school for children with disabilities. This scandal is now the subject of the biggest ever public inquiry in the UK known as the Infected Blood Inquiry which commenced in 2017 and is chaired by Sir Brian Langstaff.

Both Pete and Stephen had an inherited condition named haemophilia where the blood does not clot properly. In the early 1970s, whilst a pupil at Treloars, Pete who had previously been prescribed a treatment called cryoprecipitate manufactured using blood collected from a handful of UK volunteer donors was transferred over onto a new so called “miracle” treatment called factor concentrates, much of it imported from the US. However, the parents of children who were put on the first official treatment trials at Treloars in 1973 were never told of the greatly increased risk to their children and that hepatitis infection was almost 100% guaranteed from the first injection of US factor concentrates.

What they didn’t know also in the early1970s, was that the pharmaceutical companies that made the American products from pooled plasma relied heavily on “high-risk” paid donors such as prisoners, prostitutes, gay men and skid-row drug addicts. Plasma was also sourced from the island of Haiti and several Central American countries putting patients at risk from deadly viruses including those not prevalent in the UK. As well as viral risks to haemophiliacs, donors who were often from lower socio-economic groups that sold their blood were over bled thus depleting their health also.

In more recent times, the UK government has admitted to Grayson in a written answer to a Freedom of Information request that no risk assessment was ever carried out prior to importation of US products and the use of factor concentrates in 1973.

In a letter to Mr and Mrs Alice Longstaff dated, 12th April 1973, Consultant Haematologist, Dr Peter Jones, Newcastle wrote encouraging them to agree to Pete being put on the first UK factor concentrate trials at Treloars stating, that the treatment “could do nothing but good for the boys and other patients” but there was no mention of any risks. Old treatment records also show Pete had already received some factor concentrates in 1972 even before official licensing in 1973 possibly on a named patient basis. Grayson has still to obtain and go through records belonging to Stephen to investigate what treatment he received at Treloars.

The first complaint made to Newcastle police by Grayson and Longstaff was not taken seriously. So after a campaign rally in 2001 at Westminster, the couple along with fellow campaigners Colette and Steve Wintle went to the Metropolitan police to lodge a complaint there. The Met referred complainants back to regional constabularies. They then decided to embark on a co-ordinated complaint to regional police across England, Scotland and Wales during approximately the same time period, each taking their own evidence regarding individual cases. Local forces then referred campaigners to Dyfed Powys police in Wales that had a specific remit regarding “corporate manslaughter”. Again part of the complaint was the alleged experimentation on haemophiliacs used as “guinea pigs” at Treloar College and in some haemophilia centres. The issue of experimentation was also the subject of written complaints to the General Medical Council (GMC) AVMA (Action against Medical Accidents) the Department of Health and to human rights organizations including Amnesty International, Human Rights Watch and Liberty.

Years later, Grayson was told Dyfed Powys police investigation under controversial Chief Constable Terrence Grange (who later resigned following a series of allegations) was sat on and the evidence submitted by campaigners meant as a starting point was never followed up or expanded upon. In addition, many key persons, alive at that time (now deceased) that could have assisted with further evidence were never interviewed. The case was closed by the Crown Prosecution Service.

Last year, a virtual police conference took place at Cumberland Lodge which was set up as a form of reconciliation where complainants had been failed by the police in historic cases and included victims of the Contaminated Blood and Hillsborough football stadium scandals among others. Things did not get off to a good start. The first mistake the police made was the failure to identify the original long standing campaigners who had submitted complaints 20 years earlier, instead focusing on a new campaigner Jason Evans (the son of a haemophiliac) who was not involved in any way, shape or form with the original police complaint and only appeared on the campaign scene in 2017.

Grayson did have email contact with Rob Beckley, Assistant Commissioner of Operation Resolve who apologised but after some consideration she declined to participate as for her the issue of experimentation at Treloars is still very much active with the Infected Blood Inquiry. Grayson is requesting via her solicitors Milners of Leeds and Sam Stein QC that they make representation to the Inquiry that both Dyfed Powys police and the GMC are brought before the Inquiry barristers to be questioned on why complaints were not fully acted upon. Colette Wintle did participate and contribute to the conference but was not a pupil at Treloars. A report from this conference is due to be released on 1st February 2022.

Back on the 26th September 2018, the Northern Echo reported the opening statement of Sam Stein QC who represents Grayson (whose husband died in 2005) and the Wintle family highlighting that,

ANYONE who knowingly supplied contaminated blood to a patient who subsequently died is guilty of murder and should be prosecuted, an inquiry has been told.

Sam Stein QC, appearing at the infected blood inquiry on behalf of North-East widow and campaigner Carol Grayson, also said there had been a “systematic attempt to destroy evidence” of the scandal.

In June 2021, the Guardian reported on the case of haemophiliac Gary Webster infected with both HIV and hepatitis C who claims he was not aware of being part of a trial at Treloars stating,

“I honestly don’t remember having any information about going on trials research or anything like that. My parents never were informed of any of it … We always saw we were in some sort of weird experiment because we just couldn’t understand why they were pushing us so much to have all these injections.

It was also reported that “an undated consent form purportedly signed by his mother was shown to the inquiry but Webster said she had no recollection of it.” The paper also highlighted that,

Earlier, the inquiry in central London was shown a document that said Dr Antony Aronstam, the director of the haemophilia centre, “emphasised the necessity for research as the concentration of haemophiliacs found at Treloar’s is unique within Britain”.

On the 20th October, 2021 the BBC reported that Webster “has begun the first legal action by a former pupil against a Hampshire school where boys were given infected blood products” however complaints about unethical experimentation at Treloars to the police preceded Webster’s legal case by 2 decades.

Solicitor Des Collins acting for Webster stated, “There was a total failure to inform and obtain consent on the risks associated with the blood products administered and a deplorable dereliction of duty in the handling of his subsequent diagnosis.”

Old minutes and research papers discovered years ago by Grayson and part of the 1991 HIV Haemophilia litigation showed there that some studies relied on pupils at Treloars to participate in trials and that haematologists in local treatment centres across the UK co operated with doctors at the college and with researchers such as Dr Craske in finding subjects for alleged unethical experimentation. Patients were being quietly observed in treatment trials sometimes for years, in the case of Longstaff from his days at Treloars in the early 1970s right up to the beginning of 1990s without his knowledge or expressed permission and without “informed consent”.

When Grayson raised the general issue of “informed consent” in a letter to Dr Charles Hay (United Kingdom Haemophilia Centre Directors Organization, UKHCDO) in 2003, in an effort to obtain medical records and further information, he wrote back to her directly stating,

“I think it is completely misguided of you to stir up complaints to the General Medical Council. I cannot see this will achieve anything constructive and it can hardly be calculated to encourage support from the medical community for your campaign.”

He added,

Unless you report the history of this tragedy in a balanced and straightforward way, DOH is unlikely to take your campaign seriously and you will not enjoy the support of the medical profession.

After Grayson wrote to Hay about haemophiliacs being tested for hepatitis C without permission following infection via factor concentrates and their positive test results withheld sometimes for years, Hay responded to an email from Charles Lister at the Department of Health, who was inquiring about patients concerns stating,

“Most of the complainants belong to that impossible group of troublemakers, “Haemophilia Action UK” who would have some difficulty recognising the truth if it hit them in the face. They want money. The Haemophilia Society rightly regard them as a liability because their arguements are so unbalanced and they are so ready to lie that they lose all credibility.

Since then many haemophiliacs in addition to Grayson and Longstaff have submitted evidence on testing without permission and withholding of positive test results which are now accepted as fact by the Infected Blood Inquiry.

Grayson went on to win two awards for her research on Contaminated Blood… The ESRC Michael Young Prize and the COTT Action = Life award with her husband for upholding truth and justice.

Returning to Treloars, over 72 former haemophiliac pupils have since died from their infections including both Peter and Stephen Longstaff. Over 3,000 haemophiliacs have died in total with many others harmed by their treatment. It is not only a scandal of how many haemophiliacs were used as guinea pigs and infected with deadly viruses but the appalling way they and their families were treated afterwards in their search for truth and fighting for justice.

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”.

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Contaminated Blood: UK Haemophiliacs were exposed to increased viral risk from multiple US plasma pools that could reach as high as 400,000 donors

Arkansas prison plasma donor the late Bud Tant a known drug user infected with hepatitis C who was allowed to sell his plasma which was put into US pools of up to 400,000 donors

(Image, thanks to Linda Miller)

In the early 1970s when US factor concentrates were first licensed for introduction into the UK, haemophiliacs that have an inherited bleeding disorder where the blood has difficulty clotting, went from receiving cryoprecipitate, a treatment made from a handful of unpaid British donors to imported factor concentrates manufactured from plasma pools in America that over the years could reach as high as hundreds of thousands of paid donors. Many of these US donors were considered “high risk” for transmitting viral infections such as hepatitis B and included prisoners, drug addicts, prostitutes, skid -row donors, gay men and plasma sourced from donors in Haiti and Central American mainland countries.

As well as being high-risk for viruses, US prisoners for example were also the subject of unethical experimentation put on chemical trials with new drugs tested out on them, applied with new topical treatments that could affect the body through the skin, and injected with viruses which were sometimes deliberately mutated. These prisoners were STILL allowed to sell their blood, despite such experimentation resulting in a poorer quality of plasma and often unsafe donations.

Stanford Children’s Health describes plasma as “the largest part of your blood. It, makes up more than half (about 55%) of its overall content. When separated from the rest of the blood, plasma is a light yellow liquid. Plasma carries water, salts and enzymes.” It also contains clotting factors (which were used to treat haemophiliacs) as well as other components such as antibodies and the proteins albumin and fibrinogen. Haemophiliacs could be classed as mild, moderate or severe depending on the ability of their blood to clot.

A Freedom of Information request response recently received by long term campaigner Carol Grayson (Haemophilia Action UK) highlighted that no risk assessment was ever officially carried out by the UK government PRIOR to importing the so called “miracle” factor concentrate” treatment in 1973 This was particularly disturbing as the risks of pooling plasma had been written about for decades in international medical journals. Factor concentrates were small bottles of dried plasma that had to be mixed with sterile water and then injected directly into a vein.

Grayson has long argued that factor concentrates should never have been put on the market in the 1960 without first finding a way to inactivate viruses within the blood, even if this meant delaying the new treatment by several years.

As Grayson highlighted in a previous article on blood safety, as soon as factor concentrates were released onto the US market place there were outbreaks of hepatitis in the American haemophilia population. Jessica H Lewis wrote in Vox Sanguinus in 1970,

“The widespread therapeutic use of fractions prepared from large pools of plasma has increased the risk of exposure to SH (serum hepatitis) and has produced an apparent sharp increase in the incidence of jaundice (table 1 shown) in a group of 300 haemophiliacs seen in this clinic….”

Grayson’s husband, Peter Longstaff, a haemophiliac with less than 1% clotting factor who was treated with cryoprecipitate during his childhood years did not become infected with hepatitis until given his first US factor concentrates.

The Infected Blood Inquiry set up in 2017 to examine how haemophiliacs came to be infected with blood borne viruses chaired by Sr Brian Langstaff has been asked by campaigners to investigate pool size, historic and current and the associated risk of viral infection. (Those infected by whole blood transfusions are also included in the Inquiry, but they were NOT exposed to high plasma pools, NOT given blood from paid donors and NOT treated with imported blood.)

Haemophiliacs, on the contrary, have long been referred to as the “canaries in the coal mine”. In 2006, an ABC, Nightline article looking at the historic infection of haemophiliacs with HIV and hepatitis viruses had this to say,

Think of them as “canaries in the coal mine.” Like the fragile birds sent down into the mines to detect the first whiffs of toxic gas, hemophiliacs represent a first line of defense against any infectious threat to the nation’s blood supply.

If groups of hemophiliacs suddenly become sick, their misfortune may very well alert the rest of us to the dangers of bad blood.

For hemophiliacs, regular infusions of a blood-clotting agent made from donated plasma have become essential to life. This agent, known as Factor VIII, reduces their blood-clotting time from hours to just minutes. It has been received by hemophiliacs and their families as a miracle drug that permits children to play without fear of uncontrolled bleeding from a simple scrape and allows adults to live twice as long as they might have a generation ago.

But Factor VIII, which was synthesized from the plasma of 20,000 to 100,000 donors, also carried a significant downside: If one of these donors is infected with a blood-born virus, the miraculous factor would also be contaminated. Many hemophiliacs were exposed to the hepatitis virus in the 1970s and to AIDS in the early 1980s — experiences that suggest how a miracle can become a nightmare.

It wasn’t as if haemophiliacs were warned of the increased risks of going from cryoprecipitate to factor concentrates or the paid donors being used in imported treatment. Grayson’s late husband who attended Lord Mayor Treloar College in Hampshire as a child had his first US factor concentrates whilst on treatment trials. The boarding school catered for children with a range of disabilities including bleeding disorders. Peter’s parents received a letter from Newcastle Consultant Dr Peter Jones, who wrote to them on the 12th April 1973, stating,

You will have received a letter from Lord Mayor Treloar asking for your permission for Peter to participate in a special trial of regular factor VIII injections. The …… (referring to another child’s parents, name removed) have also been asked for their permission. I saw the …… last week and explained that I was in complete agreement with the trial and that it could do nothing but good for the boys and other patients.

It is important to note, that without knowing both the positives of taking treatment AND the risks, there is no “informed consent” which was deemed so important in the 1949 Nuremberg Code that produced key principles in terms of medical ethics.

Keeping in mind, some haemophiliacs were on prophylaxis treatment with factor concentrates three times a week to prevent bleeds and then extra treatment if they had breakthrough bleeds, you do the maths regarding how many hundreds of thousands of donors patients were exposed to potentially with each injection. This is why some doctors made efforts to ensure patients had treatment from the same manufacture with batch number in succession to avoid mixing factor concentrates and further increasing donor numbers but this was not always possible.

It is widely accepted that haemophiliacs were infected with hepatitis viruses B and C from their very first shot of imported commercial factor concentrates. Then they were often re-infected with different genotypes. It is also important to note that as haemophilia is an inherited condition there may be several family members born with haemophilia, receiving treatment and living with blood borne viruses.

Many years after the introduction of US factor concentrates to the UK, Corey Dubin, an haemophilia activist from the Committee of Ten Thousand (COTT) in the US highlighted the following regarding pool size that haemophiliacs were exposed to and in a video talk to university students, he said,

For years we were told that those pools were 30,000 donors per pool what we learned in internal industry documents was that those pools were anywhere from 30,000 donors to 300,000 donors which is a very different risk landscape, only the community never understood that.

UK haemophiliacs began to understand and question as they learned of the implications of their own infection with HIV and hepatitis viruses and watched their fellow haemophiliacs die. Acquiring knowledge was not made easy for the haemophilia community who were often tested for these viruses without their knowledge and permission using blood samples taken to check their clotting levels and then positive test results were sometimes withheld for years.

So what efforts were made to reduce pool sizes over the years and limit the spread of blood borne infections? It appears once heat treatment was introduced in the mid 1980s as a form of viral inactivation for factor concentrates, largely as a response to the emerging AIDS epidemic, little emphasis was put on limiting the number of donors per pool as a safety factor. This element was largely put on the back burner for another decade.

In 1996, a study in a September edition of Transfusion stated that, “risk of exposure increases with pool size and the prevalence of the agent in question and accumulates with repeated treatments with material manufactured from different pools.” The study also highlighted that, “reducing pool size would at best decrease this risk in proportion to the reduction in manufacturing scale. However, for individuals requiring repeated or continuous treatments, the risk of exposure to all but the rarest infectious agents would be only minimally affected, even by large reductions in manufacturing scale.

Again this highlights why it was so important to put viral inactivation and safety first with factor concentrates not years later as a reaction to AIDS after the horse had already bolted.

Regarding receiving treatment from different pools… Longstaff’s records showed he had regular treatment from ALL the US plasma companies during the critical period of infection PRIOR to heat treatment and AFTER. It is no coincidence that the Newcastle Haemophilia Centre was noted to have the highest haemophilia death rates in the UK.

As previously mentioned, US pool sizes made with plasma from paid donors were considerably higher than those in the UK that used unpaid donors. Longstaff’s treatment was a mix of the 4 main US plasma company products with a much smaller amount of UK products. Depending on what was in the fridge at the haemophilia centre or at home, he could have different treatments with different products from different US pools even within the same day when on prophylaxis treatment or during an intense treatment period of several days if bleeding. A book written by Simon Garfield “The End of Innocence: Britain in the Time of AIDS” which included a chapter on UK haemophiliacs infected with HIV actually had a chapter titled, “the fridge that day” for that very reason.

Longstaff’s HIV infection was traced back to source with the help of lawyers and a documentary film maker Kelly Duda to an identified US Arkansas prison plasma donor via treatment batch numbers, a fact accepted by the US pharmaceutical companies involved in litigation. This prison plasma programme did not close down until 1991 which was years AFTER the UK stopped collecting blood from inmates, thus prolonging exposure to high-risk donors.

To reiterate, Longstaff had almost everything going in terms of different treatments manufactured from multiple high -risk, large donor number, plasma pools that included plasma collection that went against WHO guidelines with Longstaff receiving the aforementioned paid donations from Haiti, Central American mainland countries, US skid row donors, prisoners, prostitutes, drug users and gay men.

For those severe haemophiliacs that needed regular treatment and higher amounts over longer periods for bleeds it was especially important not to mix different treatments and different pools. Imported treatment from the US that relied on plasma from Central American countries also ran the risk of including viruses other than HIV and hepatitis viruses which were not generally present in UK donors or products. Donors were also over bled compared to the UK putting them at risk and sometimes to the point of collapse, this over bleeding depleted the blood of key elements and was again affecting the quality of the plasma.

Haemophiliacs who relied on only UK products were not exposed to the same level of mixing of different plasma pools as those who had predominately US products from numerous different companies and manufacturers with a far higher number of (remunerated) donors to the plasma pools.

On 31st July 1997, at at time when UK haemophiliacs were still being treated with American factor concentrates, a Congressional Hearing finally took place in the US titled, FDA Oversight: Blood Safety And The Implications Of Pool Sizes In The Manufacture Of Plasma Derivatives. The following is taken from that hearing with an introduction by Mr Christopher Shays, Chairman of the Sub Committee of Human Resources:-

Mr. Shays. I would like to call this hearing to order.

    Welcome to our witnesses and our guests. To minimize the

risk of injury or death in the event of an emergency, the fire

safety laws set a maximum on the number of people allowed in

this room.

    This was not a good way to open.

    Surprisingly, the blood safety laws don’t contain the same

type of common-sense safeguard. There are currently no limits

on the number of blood plasma donations combined into the pools

from which therapeutic proteins are extracted or fractionated.

In the event of an emergency such as the appearance of a new

blood-borne infectious agent, excessively large plasma pools

increase the risk of disease transmission to the users of

plasma-derived products, and make recalls more difficult.

    A user of a single dose of a fractionated product today may

be exposed to plasma from as many as 400,000 donors. Pool sizes

vary widely from company to company, product to product, lot to

lot, dose to dose. There is no standard.

    Patients are not routinely informed of the risks associated

with plasma pool sizes. Last year, in our oversight report on

blood safety, we recommended, among other steps, that plasma

fractionators should limit the size of plasma pools, with pool

sizes determined as much by public health risk factors as by

production economies of scale.

    Today, we ask Federal public health agencies, blood product

consumers, and the plasma industry what progress has been made

bringing safety considerations to bear and setting practical

upper limits on plasma pool sizes. For some products, pooling

is beneficial, even required, to capture a broad range of

antibodies, for example, or to extract a sufficient volume of a

scarce protein. For other products, however, there is an

undeniable and direct relationship between the number of donors

in the plasma pool and the risk of exposure to an undetected

infectious agent.

    Tragedy taught us that lesson. In the early 1980’s, new

hepatitis strains and the human immunodeficiency virus, HIV,

slipped into the blood supply. Thousands died. Hundreds of

thousands were exposed to Hepatitis C, many of whom have never

been told of their possible infection.

    Now other viral agents, and perhaps prion diseases, pose

similar threats to the safety of the blood supply. Yet the

risks presented by pool sizes have not been addressed.

A discussion on the issue of pool size included the following verbal exchange between Mr Shays, and a Ms Zoon, Ph.D, Director , Center for Biologics, Evaluation and Research, Food and Drug Administration

Mr. Shays. Is it fair to say the FDA was thinking that

these pool sizes were more like 10,000 and then learned it was

60,000? But wouldn’t it be pretty surprising for you all to

have learned that it was 400,000 in one instance? I mean, was

that a surprise?

    Ms. Zoon. I think the number of 400,000 was high. I think

at the Blood Products Advisory Committee earlier, I believe a

presentation was made by one of the blood associations, that it

was potentially as high as 100,000. But 400,000, I think was

higher than I would have predicted.

    Mr. Shays. Does that give the FDA a greater interest in

trying to take a look at this issue?

    Ms. Zoon. Well, we are committed to putting a limit on pool

size.

    Mr. Shays. OK.

    Ms. Zoon. And I think as we get additional information and

analyze it and verify that information, we will certainly view

limits on pool size as part of a–our recommendations.

    Mr. Shays. OK.

https://www.govinfo.gov/content/pkg/CHRG-105hhrg45902/html/CHRG-105hhrg45902.htm

In the mid 1990s, the emergence of v CJD in the blood supply in some countries (which is a prion that can’t be killed in the same way as HIV and hepatitis viruses) appears to have been a big motivator for finally looking at limiting pool size following decades of mostly inactivity.

In 2005, pool size and safety continued to appear on the agenda, The Atlantic quoted the following, again highlighting that US plasma pools were significantly higher than those in Europe.

Critics today still question the wisdom of cutting costs by maintaining massive plasma pools. Safer systems operate on a not-for-profit basis, and require only sufficient amounts of plasma to meet domestic needs. A 2005 report published by writers at Ghent University in Belgium says that in Belgium, “approximately 5,000 donations are mixed into such pools. In Germany, pools containing up to 60,000 donations are considered.” In the United States, “some donor pool sizes are in excess of several hundred thousand [donations].”

https://www.theatlantic.com/health/archive/2014/05/blood-money-the-twisted-business-of-donating-plasma/362012/

So far, the Infected Blood Inquiry has only discussed evidence where US pool sizes reached 60,000 and it is important that further research is carried out to include documents detailing the far higher pool sizes that we now know existed and may continue to exist. Fortunately in 2022, most UK haemophiliacs are now on a product called Recombinant, a synthetic clotting treatment to treat bleeds However, this may not be suitable for all, leaving some patients still relying on human plasma products which have continued to be imported due to the risk of variant CJD in the plasma of UK blood donors.

As mentioned at the beginning of this article, for decades the UK has only collected blood from volunteer donors compared to the US that largely relies on the higher risk paid donors. World Health Organization 1975 guidelines highlighted the importance of countries being self-sufficient in their own blood products and not relying on remunerated donors. The UK failed miserable on the self sufficiency aspect but remained committed to not paying donors for their blood. A recent look at the blood.co.uk website which provides information on donation and collection to the general public, states the following,

In some other countries, plasma derived medicinal products are made from plasma donated by donors who are paid. These medicines can be imported to the UK.

It’s illegal to pay blood donors in the UK.

Seeing the world “illegal” came as something as a surprise. Illegal is defined as, “contrary or forbidden by law, especially criminal law”. (What would be the implications and penalties for a company/organization if they were to use blood from paid donors in the UK?)

The Adam Smith Institute blog, titled “Paying The Blood Price Is The Way To End Donor Shortages” (22nd August, 2013) also states,

The real issue is that it is illegal to pay for blood directly from the source but it’s not illegal to buy it from countries that have a surplus. Often this surplus is from paying their citizens to donate – like in the United States for example.

Over the years, the type of language used in publications regarding selling blood in the UK has tended to be along the lines of “against guidelines” “not permitted” “against the rules” “immoral” “high-risk” but not stated as “illegal” I have now written to both the website and the Department of Health and Social Care to ask them to clarify the following:-

Please can you advise,

  1. What year was this ruling first introduced?
  2. Under which part of UK legislation can I find this ruling?
  3. Could you please provide a link.

It will be interesting to see how they respond. The point is however is that there is a great hypocrisy here as haemophiliacs were not allowed to be given blood products manufactured from UK paid donors but this safety point was ignored in terms of them receiving factor concentrates made from the plasma of remunerated US donors. So in essence, haemophiliacs received an inferior product, they were treated as second class citizens when it came to both protecting them from viral infection compared to the rest of the UK population receiving blood. These double standards were a key factor covered in documents within the 1991 HIV Haemophilia litigation but sadly the evidence was never heard in court.

Contaminated Blood victims need to know who was responsible for actions taken which affected the safety of patients, therefore, along with plasma pool size, it is important that the Inquiry looks at the implications of using paid donors as to date there has been no accountability for decisions made that led to harm in haemophiliacs and serious loss of life. In addition to haemophiliacs, some partners and children also became infected and many families were left bereaved and have spent years fighting for truth, justice and financial recompense, as, so far, not a penny in compensation has ever been paid.

Update

Today, 12th January 2022, I received the following response to my questions from Dr Rekha Anand, Consultant in Transfusion Medicine, NHSBT

Dear Carol,

Thank you for your enquiry to NHS Blood and Transplant regarding blood donation.

In 1946, the Ministry of Health set up the National Blood Transfusion Service.  It relied on the commitment and dedication of voluntary donors, as NHS Blood and Transplant does today.  Blood donation has been voluntary since the service was first established in 1946, so there has never been any requirement for us to refer to UK legislation.  The blood service in England has never paid donors to give blood or blood component donations.

If you have any further questions, then please do not hesitate to contact me.

Kind regards,

Rekha.

END

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”.

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Contaminated Blood: How a “journalist” conning the haemophilia community led to an International Emmy for documentary “In Cold Blood”

ORIGINAL WINNERS

Carol Grayson and Peter Longstaff (deceased) who received 2 awards in 2009, for their research, campaigning and document discoveries, the ESRC Michael Young Prize and the COTT Action =Life Award on Capitol Hill, Washington DC

(Image, taken by Grayson)

Jason Evans, the son of a UK haemophiliac who died after being given Contaminated Blood learnt this week that the documentary “In Cold Blood” in which he was featured discussing the scandal had won an International Emmy award for Current Affairs. Evans posted a “publicity” photo of himself taking centre stage advertising the accolade on social media. The image was shared multiple times by haemophilia activists accessing the open Factor 8 group campaign page set up by him and also on Twitter. Evans regularly encourages and gives permission for his posts and photos to be utilized in the fight to hold those that harmed haemophiliacs and their families to account. Indeed, that is the very essence of his page and website.

Haemophiliacs have an inherited condition where their blood does not clot properly. During the 1970s and 1980s, they were treated with a new so called “miracle” treatment called factor concentrates made from large pool plasma often collected from “high-risk” donors including US prisoners who sold their blood for cash and drugs. Former Secretary of State for Health Andy Burnham described the events surrounding the infection of haemophiliacs with deadly viruses and the subsequent government response as “a criminal cover -up on an industrial scale.”

Perversely however, since 2017, Evans who claims to represent haemophiliacs and their families has lied, cheated and conned his way through the Infected Blood Inquiry, set up to investigate the infection of around 4,700 haemophiliacs with HIV and hepatitis viruses (and others infected through whole blood transfusions) by presenting research carried out by long standing campaigners as if it were his own work.

Evans, who refers to himself as an “investigative journalist” set up the campaign group Factor 8 in 2017 which features prominently on social media. He admitted to “following” multi awarded researcher Carol Grayson closely for 2 years, prior to the start of his own campaigning though he did not make himself known to her at the time. This (presumably) online and somewhat sinister “stalking” has clearly paid off as Evans is regularly applauded when he appears on TV and radio using Grayson’s work though always without reference. Grayson set up her own campaign group Haemophilia North, later Haemophilia Action UK way back in the 1990s. Tragically many of her original supporters are now dead.

Grayson lost both her husband Peter Longstaff and brother in law Stephen Longstaff after they received infected factor concentrate treatment. She always intended for her research and documents to be used by others providing they were properly referenced. Evans is having none of that and appears to lap up the media attention and glowing comments from his followers who are oblivious to the fact that they are being conned. One even suggested he should receive a knighthood.

What is also disturbing is Evan’s regular appeals for money for his “research” when much of the time he is simply regurgitating the work carried out by Grayson over a 30 year period. Grayson and her late husband never asked for a penny from vulnerable victims and instead funded their campaign out of their own pockets, often going short of basics to keep their investigations going.

Evan’s “star -struck” followers, often the children of infected haemophiliacs are easy prey. Most only recently actively joined the campaign scene and are naive to the fact that much of the evidence that Evans falsely claims he “discovered” was in fact documents researched and discovered by Grayson and Longstaff over many years. Grayson used this evidence in her Economic and Research Social Council (ERSC) Michael Young Prize dissertation on Contaminated Blood written in 2005/6. Michael Young (Baron Young of Dartington) was a British sociologist, social activist and politician, he lived from 9th August 1915 and died on the 4th January 2002.

The award ceremony was attended by Chris James then CEO of the Haemophilia Society, the late Martin Harvey, CEO of the now defunct Macfarlane Trust set up to provide financial support to haemophiliacs infected with HIV and their families, Sue Watts, former presenter of BBC Newsnight and independent haemophilia campaigner Colette Wintle. Sir Peter Bottomley presented the award in his role with the ESRC. So Grayson has plenty of witnesses regarding the utilization of the documents she discovered.

These papers were sent to the Department of Health (that had systematically destroyed their own copies) with accompanying legal letters on the instructions of Grayson soon after publication of her thesis and were later transferred to the National Archives at Kew. There, other campaigners including Evans have been able to access them through Freedom of Information (FOI) requests. Much of this evidence formed part of the 1991 HIV litigation, documents exchanged between government lawyers and solicitors for haemophiliacs during the “discovery” phase. Solicitors were meant to destroy the documents within 8 weeks of the conclusion of the litigation but for some unknown reason Longstaff’s solicitors did not trash their files.

Despite a commitment given by government to maintain the papers regarding the written letters of transfer of the documents discovered by Grayson back to Department of Health lawyers, they recently admitted in writing to destroying these papers… fortunately Grayson kept her own copies. The failure of NA Kew to reference Grayson as the provider of many documents with an accompanying history page on how they had been used and the awards received has also colluded in helping others to use this evidence without crediting them to her name. Her lawyer Ben Harrison of Milners of Leeds and Sam Stein QC, a top criminal barrister are working hard to ensure the government do not get away with this this and that she is properly accredited.

Grayson also saved several large tranches of additional government documents from being trashed over the years including many on hepatitis and government blood policies including v CJD, these too are kept at the National Archives and can be accessed via FOI.

Evans is represented by Collins Law solicitors whose clients are now deserting the firm in droves for other lawyers due to allegations that they are not receiving a good or adequate service. Victims complain they are hardly hearing from their representatives who are too busy focused on Evans and garnering publicity for themselves to pay attention to those infected and affected. One former client of Collins (who did not wish to be named) expressed his dismay that confidential legal files were allegedly left piled up unattended in a room where other visitors to Collins offices could easily access the contents.

Bell Yard Public Relations company can be seen championing both Collins and Evans on Twitter but blocked Grayson when she highlighted her concern over their collective failing to reference her work. A letter from Grayson’s legal representative on the matter to Collins remains unanswered.

In recognition of the “conflict of interest” that Grayson has with those who plagiarise her work, the Chair of the Infected Blood Inquiry, Sir Brian Langstaff allowed Grayson to be represented separately by Milners solicitors as opposed to the original 4 law firms appointed to the Inquiry. Grayson and her lawyers received the decision in writing not long after the Inquiry began. This was also applied to Grayson’s campaign colleague of many years, Colette Wintle who is an infected female haemophiliac that has long championed the cause of women with a bleeding disorder and the specific difficulties they face. Wintle is a witness to Grayson’s documents as they were often shared with her at the time of release, many years before Evans began his campaign. Both women have been subjected to repeated verbal abuse and misogyny during their years of activism from government and other authorities, the medical profession, some male campaigners and the media.

Evans has been involved in several documentaries now spouting the discoveries of Grayson, subject by subject, minus any acknowledgement, the latest being as part of “In Cold Blood”. A several times awarded documentary maker, that has worked with Grayson over many years, reacted to the news of the Emmy saying she was “gutted”. She e-mailed Grayson stating,

“you must be totally pissed off that that lying git who claimed to find all that info himself when actually the film you made, already released that evidence years before, because you actually found it doing the work.”

She added,

“They (the documentary team) just let him act as though he did the work…. So annoying… Makes me sick.”

The film-maker then highlighted her own experience of misogyny saying that if she complained directly to the relevant media bodies,

“they will simply say its me being jealous of the Emmy. Also I am treated like shit as a female director.”

She then advised Grayson to make official complaints herself to International Emmy Awards, ITV and Head of ITV stating,

“the director lied in the film making it look as though Jason had discovered all the files which suited the narrative but that was false information.”

The director in this case is Grierson award winning and BAFTA nominated documentary maker Marcus Plowright. He clearly has no interest in showing an accurate Timeline of events as evidence was actually discovered and giving credit to a widow whose work exposing the scandal and highlighting themes (now echoed by the film years later) led to several previous awards for Grayson. Female haemophiliacs have been written out of the documentary narrative, where is the representation that women have been at the forefront of haemophilia campaigning over decades and historically led the way on exposing what has been covered -up and in getting increased payments for those infected and affected?

Appalled by the arrogant, abusive and misogynistic behaviour of Evans and Plowright, who think they have the right to steal the work of others, Grayson has approached the national Haemophilia Society for support with regard to the misuse of her research. She stated that, “although there were numerous difficulties in the past with the Society, Colette and I draw a distinction between past history and the current organization manned by new staff.” The women worked with staff member, Jeff Courtney to produce the first written apology from the charity for past failings and describe recent interactions with current CEO Kate Burt and trustee Clive Smith as “positive”. All recognize that it is vital that a true and accurate Timeline of events, discoveries and research is utilized so infected and affected members of the haemophilia community can achieve the truth, justice and the substantial compensation they deserve. Evans appears oblivious to the harm he is causing those that have suffered so much.

Grayson said,

“a false Timeline such as Evans claiming he discovered key documents in 2017 when they were in fact discovered by myself 20 years ago and presented in face to face meetings with ministers only serves to undermine the campaign and allows people to get away with murder. Listening to Evans on camera, as well as my documents, he stole my language, my terminology, the very essence of who I am. I am hearing my words and discoveries coming out of a male mouth. I want to highlight that women are abused all the time in this way in their day to day lives as researchers, activists and campaigners. We want men to stand with us…not take over our identities but if they are too weak and cowardly to do so, and can only cheat us to satisfy their own egos, then we will make sure we stand up for ourselves!”

She added,

“if Collins and their client threaten to take legal action against me, they can go ahead. Its an ideal opportunity to show my documents and when they were first discovered and placed in the public domain, and how stories initially appeared in the press and most importantly its a chance to educate new haemophilia campaigners that have never learnt the real history.”

As part of Grayson’s research, she traced the treatment used by her late husband who died back in 2005 to an HIV infected Arkansas prison donor through US lawyers and American documentary film maker Kelly Duda whose documentary, “Factor 8: The Arkansas Prison scandal” and accompanying documents are with the Inquiry. The depositions collected by American legal teams were accessed via Leiff Cabraser Heimann and Bernstein on the instructions of Grayson and are currently appearing as evidence on the livestream channel at what is now the UK’s biggest ever public inquiry and expected to report next year.

The “In Cold Blood” documentary team have been able to get away with conning the haemophilia community as many of the original media links where key stories on Contaminated Blood were FIRST broken by Grayson and Longstaff (long before Evans arrived on the scene) no longer exist online as websites change and new ones take their place. However Grayson has produced a detailed document of historic media links of some 136 pages and growing for the Infected Blood Inquiry and that is just listing the headings and dates. In addition she has sent scanned articles in old hardcopy newspapers from their awarded Newcastle Journal “Bad Blood” campaign set up jointly with journalist Louella Houldcroft to Inquiry investigators along with other media.

To summarise, there must be zero tolerance of misogynists that abuse women in any form. It starts off with a sexist comment at the office, failing to promote women to key jobs, men claiming women’s research as their own, groping female employees at Christmas parties… then before you know it has progressed to something far more terrible, a respected member of the community, a policeman thinking he has to right to kidnap, rape and murder a bright, articulate and much loved young woman.

Meanwhile, the Infected Blood Inquiry focuses this week on the international pharmaceutical companies that produced factor concentrates with proof now being seen by the public of the allegations made by Grayson over decades as her documents are shown on the Inquiry livestream link. It is to be expected that Evans will appear again on TV screens before long claiming the next bunch of documents highlighted by Grayson were also found by him. One wonders if Mr Evans is now so far lost in cloud cuckoo land he has begun to believe his own string of lies. He has certainly invested a great deal in recent years in the art of deceiving the haemophilia community and conning journalists too lazy to carry out their own checking before publication and releasing their somewhat flawed Contaminated Blood documentaries!

Finally in an attempt to silence Grayson, Evans made a complaint to WordPress about her using the very “publicity” shot for “In Cold Blood” that he posted on an open Facebook page where so many regularly share his photos and posts (including this one) as part of campaigning on their own Facebook pages. To Grayson’s knowledge, no other objections have ever been raised to this on the page since it began. Grayson credited Jason, part of the documentary team, with putting the photo of “In Cold Blood” on his Facebook site, ironically most other campaigners did not. So it will be interesting to see if dozens of other activists will now be subject to Evan’s complaints also? Grayson, one of the UK’s most outspoken activists on Contaminated Blood over several decades said,

“those who think that bullying me will stop me from standing up for truth and justice, should think again, after decades of campaigning this only serves to make me fight even harder!”

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”.

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Contaminated Blood: Biological terrorism… what is a haemophiliac’s life worth? A comparison with victims of 9/11

More UK haemophiliacs have died from Contaminated Blood than the number of victims that died on 9/11

There is much discussion in the media this week about the film “Worth” which can currently be viewed on Netflix. The movie deals with the very real issue of how do you value and calculate a life in financial terms after an individual and their family are seriously harmed? In this case the harm comes as a result of the September 11th 2001 terrorist attacks in the US. Worth features Michael Keaton as a lawyer and Stanley Tucci who has lost his wife and their collective dilemma over the ethics involved in putting a figure on what a person is worth… hence the title of the drama. 

See trailer below…

and read,

“A Film About the Impossible Job of Valuating Lives” (The Atlantic, September 4th 2021)

Worth, a Netflix movie about the September 11th Victim Compensation Fund, reminds us that tragedies can’t be neatly quantified.

https://www.theatlantic.com/culture/archive/2021/09/netflix-worth-how-to-value-life-september-11/619979/

Here, I will look at some facts and figures comparing UK haemophiliacs in the Contaminated Blood scandal that were often treated with US plasma products for an inherited bleeding disorder where their blood does not clot properly to the victims of 9/11.

On August 29th, CNN reported that,

“a total of 2,996 people were killed in the 9/11 attacks, including the 19 terrorist hijackers aboard the four airplanes. Citizens of 78 countries died in New York, Washington, D.C., and Pennsylvania” ( cited in, September 11 Victim Aid and Compensation Fast Facts)

(This does not include First Responders after 9/11 that became ill as a result of participating in clean up operations.)

NOTE:- The number of deceased in the 9/11 attacks is actually LESS than the now over 3,000 Contaminated Blood haemophilia deaths in the UK alone that all belong to what the British government terms “a unique patient group” who were infected with HIV and hepatitis viruses during the 1970s and 80s by the very treatment meant to improve their lives.

What is particularly tragic, is that haemophiliacs often knew each other “from the cradle to the grave”, through familial links with haemophilia running through families, by attending special schools together such as Lord Mayor Treloar College, holidaying with each other through Haemophilia Society ventures, going to AGMs and conferences to learn more about their condition and treatment, spending time on the same hospital wards and attending each others weddings and funerals. The impact on the haemophilia community has been and continues to be devastating!

This disaster was called “the worst medical treatment disaster in the history of the NHS” by Lord Winston (in his role as vice chairman of the Haemophilia Society) and is a phrase which does not include those infected through whole blood transfusions whose death figures are entirely separate.

This destruction of life was truly a “Haemophilia Holocaust” (the term used by US lawyers) where another 10,000 American haemophiliacs were infected through bad blood, plasma collected from the highest risk donors in society, drug addicts, gay men, prisoners and prostitutes who sold their blood. Many more haemophiliacs were infected in Canada. The plasma from each person went to make up donor pools of up to 300,000 donors which was then manufactured into factor concentrates by US pharmaceutical companies. The lack of care in the collection of plasma often compromised donor safety as well as recipients of this so called “miracle” treatment. There was cross contamination, over bleeding and poor standards of care especially in the prison environment. If there any miracles that could be argued throughout this whole tragedy, it was that some haemophiliacs managed to survive against all odds, living through their contamination with multiple deadly viruses.

The UK also produced its own treatment products but with with much tighter collection guidelines using unpaid, volunteer donors and much smaller plasma pools. However, after the government failed to invest adequately to achieve self-sufficiency in producing factor concentrates, the government then relied heavily on importation.

As well as dealing with the actual infections, haemophiliacs have had to face the fact that key evidence on the safety of factor concentrates was kept from them. They discovered long afterwards that they were subjected to years of often unethical experimentation and treatment trials without their knowledge and informed consent. In addition, they learnt that many were tested for HIV and hepatitis viruses again without informed consent and positive test results were often withheld (sometimes for years) leading to infection of some partners and even children. In a nutshell, haemophiliacs were betrayed over and over again by many of those who were meant to protect them from harm and in some cases were failed even by their own lawyers, though all now have new legal teams working hard for justice.

As with 9/11, the global Contaminated Blood scandal included victims from many countries. In the case of haemophilia victims, this was wherever the pharmaceutical companies exported to and “dumped” their dangerous products. US lawyers have represented victims from around the world including victims from the UK.

One haemophilia lawsuit filed in the US which appeared on the Centre for Disease Control information network, highlighted the following in 2003:-

According to the lawsuit:

  • The contaminated blood products had infected at least 5,000 hemophiliacs in Europe with HIV by 1992.
  • Nearly all infections of hemophiliacs in Japan have been traced to contaminated U.S. blood products.
  • At least 700 HIV cases in Latin America are linked to the use of contaminated blood products by hemophiliacs.

The case is Domenico Gullone et al. v. Bayer Corp. et al., C032572.

https://www.thebodypro.com/article/lawsuit-alleges-companies-sold-contaminated-blood-overseas

However, all UK cases were then returned to the UK for British courts to deliver justice on the grounds of “forum non conveniens” (not the right venue) and UK authorities were deemed to be the first line of “duty of care” for UK haemophiliacs. There was some progress in that for those that traced back infected treatment batch numbers to source, the US pharmaceutical companies did go as far as officially recognising these victims as a token gesture and a miniscule payment that wouldn’t in many cases have reached the equivalent of an average salary for one single year. Then then promptly sealed the case with a silence clause. It was only through the determination of Hartlepool born haemophiliac Peter Longstaff in initiating the US litigation for UK haemophiliacs through finding and approaching San Francisco law firm Leiff, Cabraser, Heimann and Bernstein with the support of US and Canadian campaigners that this small result was achieved.

The number of the 10,000 American haemophiliacs infected does not include their affected family members and is without taking into consideration the thousands of haemophiliacs that received infected US factor concentrates throughout the rest of the world, again these are figures far beyond those killed in 9/11 even adding in first responders harmed after that date. This damage on a colossal scale was attributed largely to the deeply flawed blood policies of governments combined with the actions (or inaction) of international pharmaceutical companies that often put profit before safety. This was followed by dubious decisions on the part of some treating doctors and ineffectiveness of national haemophilia organizations meant to be representing the interests of those with bleeding disorders.

In the UK, haemophiliacs were given a “Special Status” by government that recognized in parliament and documented in Hansard, that they were ALREADY disadvantaged from birth through their hereditary condition and as a result suffered in education, employment and denial of life insurance. In addition, there could be several haemophiliacs living within the same family, each infected with multiple viruses. This was their situation before considering the need for compensation for viral infections. Government stated,

“haemophiliacs were an exceptional and specific group who merited exceptional treatment. The Government remain convinced that their case is exceptional.”

In the US, “the average compensation award to a victim of 9/11 was $2, 082,128 and went as high as $7.1 million”. The victims of 9/11 were visible and in contrast to haemophiliacs had a huge amount of very public support from the beginning of their fight for justice whereas haemophiliacs had decades of extreme discrimination and abuse now being documented as part of the Infected Blood Inquiry chaired by Sir Brian Langstaff. The Inquiry is the largest ever held in the UK and commenced in 2017.

Unlike 9/11, no war was launched against those that killed the world’s haemophiliacs. It has been a huge uphill battle for victims themselves to get any recognition of the damage done by the state. To date, UK haemophiliacs and their families have only ever received “ex -gratia” payments and have yet to receive a penny in actual compensation..

The 9/11 attacks were visual and graphic on our TV screens and had a huge impact on the public conscience, whereas, Contaminated Blood victims were largely hidden, unheard and died in pain and distress often unseen except by loved ones, traumatized by what they experienced. The victims of 9/11 from different countries were attacked on US soil in full view of the world making it impossible to wriggle out of seriously addressing their damages, losses and needs. UK haemophiliacs were infected with US products but on their own home soil so lawyers acting for pharma companies were able to shift the blame onto the UK due to the fact that it was argued that UK authorities were aware of the risks and sourcing (as highlighted in documents campaigners researched and discovered) but failed to take action or alert the haemophilia community to dangers.

In the UK there was the problem of “conflict of interest” including regarding the national Haemophilia Society (haemophiliacs’ representative body) that received most of its funding from government and pharmaceutical companies. This translated to an unwillingness to upset both and a continuation of importation no matter what the safety risks. This resulted in a great deal of tension between campaigners and the Society.

By the time haemophiliacs and families attended a meeting in 2001 with the Haemophilia Society in London on the very day of the 9/11 attacks to discuss what needed to be done to improve relations, find mutual ground and what tactics to try next to achieve a public inquiry and long awaited truth and justice, they had ALREADY been campaigning for almost 2 decades. For years, victims infected and affected had been suffering and dying from a wide range of symptoms and physical damage from multiple viruses, experiencing ill health due to the impact of long term caring 24/7 and were living with psychological damage as a result of depression, anxiety, grief and PTSD. As with 9/11 victims, there is not an area of haemophiliacs’ lives that are not affected!

On 23rd August 2011, ABC News reported developments for 9/11 victims in the US as follows,

“The September 11th Victim Compensation Fund of 2001, created by Congress, distributed $7 billion to survivors and victims’ families. There have been 2,983 families of those who died and received an average of just over $2 million tax-free per claim, according to Kenneth Feinberg, former pro bono administrator of the fund.”

On July 29th, 2019, after much delay, Vox reported that 9/11 first responders would finally have a permanent victim compensation fund. The publication stated,

“A day after, the House Judiciary Committee unanimously voted to pass the Never Forget the Heroes Act, which would extend the fund through 2090. The entire House of Representatives passed the bill 402-12 on July 12, putting the pressure on Senate Republicans. Despite some protest from Sens. Rand Paul (R-KY) and Mike Lee (R-UT) due to budget concerns, the Senate overwhelmingly approved the bill 97-2 last week.

With the bill now signed into law, the financial pressures on the fund will be alleviated, and first responders and their families won’t have to worry about slashed benefits or whether they’d be compensated for the harm they suffered while serving the country.”

Twenty years after 9/11 and the meeting of haemophiliacs and the Haemophilia Society in London on that fateful day, they. unlike 9/11 victims have STILL not been compensated. For those that survived and bereaved families, their treatment by the state, post infection, has been almost as distressing as living (and dying) with multiple deadly viruses and relatives adjusting to their loss and grief.

In 2007, an attempt was made by Lord Archer of Sandwell to hold an inquiry into how haemophiliacs came to be given Contaminated Blood. Although well meaning, the Inquiry was privately funded and had no legal clout. Archer did however deliver very positive recommendations in 2009 including “compensation on a parity with Eire” that had the best compensation deal for haemophiliacs announced way back in 1996. This was however blocked on lies told by the British government falsely claiming Eire had paid out on the grounds of liability. This was completely false and letters already obtained by long standing campaigners Carol Grayson and Colette Wintle in 2004 when the lies began, showed that the Eire settlement was in fact a “no liability” scheme paid out on the grounds of “extraordinary suffering”. It was paid out at court levels without haemophiliacs having to go to court as the Eire government decided it would be wrong to retraumatise people who were suffering so much.

The letters which were written from the Eire government, Irish lawyers, Malcomson Law and the the Irish haemophilia Society were later used to win a Judicial Review in the name of haemophiliac Andrew March in 2010 and backed the fact that the governments decision not to compensate and the arguement used was “infected with error” due to the lies told to victims and in parliament to avoid paying out compensation.

The UK government also tried to say that no liability was found by Archer when they should have emphasised this was due to the fact that establishing liability was not in the Terms of Reference and any evidence showing this had to be returned to witnesses. Had the TORs been able to include this, many would argue, Archer would indeed have concluded that there was alleged negligence in many directions.

In 2021, decades after haemophiliacs and some of their partners and children became infected through Contaminated Blood, Sir Robert Francis QC has now been appointed by the Paymaster General and “has launched a consultation on the terms of reference for his independent study looking at options for a framework for compensation for the victims of the infected blood tragedy”.

https://www.gov.uk/government/news/infected-blood-compensation-framework-study-consultation-on-terms-of-reference

This runs at the same time as the work of Sir Brian Langstaff who is looking at amongst other things, the day to day impact on victims and will come up with his own recommendations in his final report.

Haemophiliacs have lost their physical and psychological health and sometimes their partners and children through infection. In many cases, they also lost their livelihood, hard fought for educational opportunities at universities and colleges, wages, pensions, insurance, ability to obtain a mortgage and life insurance if they could get it in the first place. Many lost the right to a family life being unable to find a partner due to the stigma of HIV and hepatitis C and being exposed to new variant CJD. They also had to come to terms with not having children if they did marry, in case of passing on infection. Partners and sometimes other family members have had to give up good careers to become full time carers and also suffered physical and psychological trauma. In addition the treatment given to haemophiliacs often violated the Nuremberg Code set up in 1949 as a set of good guidelines for practise and clinical trials. They were used as guinea pigs in unethical trials and on top of all this, were subjected to extreme prejudice and discrimination and even had their organs stolen after death.

It is important to note that in addition to HIV and hepatitis viruses, haemophiliacs were also exposed to new variant CJD (this time through UK plasma) with a longer potential incubation period than first thought. Lord Archer who presided over a privately funded inquiry into Contaminated Blood that reported in 2009 said haemophilia victims must be compensated for each virus and in this case exposure to a prion disease in addition.

One widow of a man who developed CJD through growth hormone treatment was paid out £1.4 million in compensation and this did not include any additional viruses. On the 9th September 1999, the Guardian reported,

“Neil Kreibich contracted Creutzfeld- Jacob disease as a youngster with human growth hormone taken from the pituitary glands of contaminated corpses. He died in July 1997 at the age of 37. Mr Justice Morland said the department of Health should pay the record figure to his widow Elizabeth, 37, from Newcastle upon Tyne, and the couple’s three children all under seven.”

Back to 9/11, as the film Worth highlights, it is important that those calculating compensation claims of victims, “step out of the boardroom and meet people face to face” so that they can “understand each individual loss”.

Lawyers representing haemophiliacs have admitted to their clients that they have not dealt with a situation previously that reflects the same extent of damage as that caused to haemophiliacs and their families and that the current system of compensation within the UK would not adequately address harm on such an extensive scale.

To sum up, the impact of Contaminated Blood although hidden and played down for years as government went into “damage limitation” mode amounts to “extraordinary suffering” on a whole new level and remedies must fully acknowledge this fact. The lives of haemophiliacs and their families are worth no less than the victims of 9/11 and their tragedy, loss and suffering has in fact gone on for far longer. Haemophiliacs now wait to finally receive the “substantial compensation” that the UK government has committed to awarding the infected and affected whose lives have been damaged forever! It is also important that attitudes change and the practice of leaving the longest standing haemophilia campaigners out of key meetings to discuss compensation because they know their subject too well and will no longer be fobbed off with a pittance of a payment by government must end now.

It is important to note that the word “inadvertent” infection was quietly removed by government following a meeting of campaigners Carol Grayson and Colette Wintle with health minister Anne Milton in 2010. She rightly concluded the word was inappropriate and offensive to victims.

Since its launch in 2017, those attending the Infected Blood Inquiry in London or watching the proceedings livestream has been listening to harrowing stories from witnesses and it would be almost impossible not to conclude that what happened to them was as a result of alleged negligence. It is time therefore that government deliver the long awaited justice that so many have not lived to see and the level of compensation must adequately reflect the extraordinary level of harm, loss and financial need.

Anne Milton highlighted back in 2010 that a unique patient group required a unique solution and its time for government and lawyers to think “outside the box”. They may even need to include some legislative changes to expand financial help, protect benefits wherever a UK victim is living in the world (as not everyone wants to reside in the UK) and to avoid further double and triple punishment that has already been experienced by haemophiliacs. The infection of those with bleeding disorders has had a knock on effect in many areas of day to day life and the resulting consequences can affect benefits (depending on location) pensions and even family inheritance as victims become too ill to work and are forced to rely on the state. It is not only compensation that needs addressing but ensuring wider issues are not ignored. We know that any legislative changes can be pushed through very quickly when government so desires and improving the circumstances of haemophiliacs must include goodwill and be without delay.

The UK is very good at following the lead of the US (even when disastrous). As the US government has now demonstrated in extraordinary, and exceptional circumstances with a unique group of people such as 9/11 victims, if the law is not adequate to cover victims and there is fear of bankrupting companies (as was stated to haemophiliacs with the US plasma companies)… then change the law.

In the UK, government has finally agreed to compensate but it must be at the right level and changes may be needed to the law as in America. Exposing haemophiliacs to an almost 100% risk of hepatitis infection without FIRST researching a way to virally inactivate against the very high risks of using large plasma pools from paid donors could be argued as an act of “biological terrorism” against haemophiliacs in violation of the Nuremberg Code. This was set up in 1949 with guidelines to avoid unethical treatment trials such as those conducted by the Nazis at Auschwitz concentration camp. Haemophilia trials violated ever point of this code. According to UKHCDO records, Peter Longstaff was being studied by the now infamous Dr Craske from his first years at Treloar College as a boy on the first UK factor concentrate treatment trials right up until 1990 and was completely unaware of this fact.

No money will ever compensate for what has been inflicted on the haemophilia community which has devastated lives but it can help to make those lives a little easier by at least removing financial worries and reflecting the damage and apology (though very late in the day) given by the UK government to those infected and affected through Contaminated Blood. .

END

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”.

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Contaminated Blood: Widow has still not received years of back payment owed following government Trust “cock-up”

Widow and campaigner Carol Grayson still fighting for back pay pictured with late husband Peter Longstaff who died after receiving contaminated blood products as part of his NHS treatment (Image, Newcastle Chronicle)

Open letter from Carol Grayson to Brian Williams at the Cabinet Office

Dear Brian,

Money owed through the Macfarlane Trust wrongly assessing me for years has still not been paid

I would be most grateful if you could raise the following issue as a matter of urgency with the Cabinet Office.

Earlier this year I received a back payment of several thousand pounds related to my monthly payments as a widow registered with EIBBS (English Infected Blood Support Scheme) as the new scheme had inherited my claim as a registrant of the Macfarlane Trust. The back payment was made due to a serious mistake in means testing the disability part of my ESA Support Rate payment which was WRONG, NOT ALLOWED and should never have happened in the first place. This left me in an extremely vulnerable position and because I was mistakenly paid thousands of pounds less a year than I should have been, I could not afford to make ends meet and ended up having to use a credit card for basic necessities because those assessing me had not assessed me correctly. This caused enormous upset and unnecessary distress.

I was happy that EIBBS listened to my complaint, realized the mistake and that back pay plus interest was sorted out at least back to April 2018 when they took over from the disbanded Macfarlane Trust.

HOWEVER…. the mistake was originally made by the Macfarlane Trust at the time when I was transferred over to ESA around 2011 and over the years I REPEATEDLY wrote to the Trust (and even a Trustee also at one point) stating I believed I was being wrongly assessed (which turned out to be correct) and asking them to look again at my claim but it was never sorted or put right by the Trust.

Fortunately once the Infected Blood Inquiry started I then had a legal team to help me work out what had gone wrong.

EIBBS apologised to me and identified that the mistake occurred long before they took over and paid me back to when they first set up as mentioned in 2018. My lawyer and I now need to know who is liable for paying me back to 2011 with interest now that the Macfarlane Trust no longer exists, shut down by excluding the longest standing campaigners from a key meeting to discuss this move.

Can you clarify very simply to me, who my lawyer and I must approach for this back money (from 2011 to 2018) to be paid. Is it the Terrence Higgins Trust that took over the Macfarlane monies? I am STILL suffering financial losses of thousands of pounds due to the incompetence of certain person(s) who did not do their job properly regarding assessing me. I am prepared to forgive that gross error and not take the matter further PROVIDING the rest of my back money to 2011 is sorted!

I am copying this to the Infected Blood Inquiry who are aware of my long and ongoing struggle for justice in the matter of back pay and of course my legal team.

Thanks for your assistance.

Please confirm receipt of this email and I look forward to your prompt reply.

Kind Regards

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”.

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Contaminated Blood: Victims are being denied the promised backdated “parity” payments from government

Independent campaigner Colette Wintle challenges the government on back pay (Image, Ham and High)

Open letter from Colette Wintle to Brian Williams at the Cabinet Office

Dear Brian

It has been a considerable period of time since we met when I attended a meeting with 27 other campaigners in January 2019 to meet with the then Cabinet Minister Oliver Dowden, Nadine Dorries Minister for Suicide and Mental Health, and other senior civil servants at the Cabinet Office. As you will recall , one of the main topics of discussion and a contentious one, was the appalling disparity of  ex gratia support payments across the devolved nations of the UK. The background history was that the contaminated blood disaster took place over decades under a Westminster government, well in advance of the subsequent devolvement of Scotland and Wales. Key to this, is the fact that people registered with the schemes which were set up from the late 1980’s and 2004 ( Skipton Fund) were being unfairly treated in the amounts they were receiving and further disparities occurred with individual nations paying differing and divisive amounts for the same infections.

I believed that after several years of battling to correct this unfair system, and that after what was unnecessary prevarication on governments part, the announcement made in March this year by Penny Morduant, laid out clearly governments intention to rectify but not totally level up the payments across the UK. I would like to point out this announcement does still not offer parity as Teresa May stated should happen in parliament prior to leaving office as Prime Minister. Parity should be backdated to 2016 when Scotland were paying at higher levels, rather than 2019. As a reminder of what Penny Morduant confirmed government would do see below and in particular paragraph two under the heading Parity.

https://questions-statements.parliament.uk/written-statements/detail/2021-03-25/hcws895

I write as a matter of urgency to draw your attention to the information I was given yesterday by one of the administrators of the English Infected Blood Support Scheme. I telephoned EIBSS to inquire as to when I could expect to receive the backdated monies I am due from the annual payments which were backdated to 2019. To my utter disbelief, and despite the clear intent of the announcement Penny Morduant made, I was told categorically that the DHSC had not instructed EIBSS to pay this money, but focus purely on the four categories of uplift listed further down in the announcement! This is an absolute disgrace because it is not what the Minister instructed and is in direct conflict to what was written under the heading PARITY. “I am pleased to confirm that the following changes are planned to the four separate schemes to bring them into broader parity. Increases in annual payments will be backdated to April 2019.”

Perhaps you could look in to this as a matter of urgency because there is clearly a communication problem between the Cabinet Office and DHSC. As a female Haemophiliac and long standing campaigner with severe health problems, I am disgusted that I have had to discover this latest skullguggery from the Department of Health who frankly have behaved with contempt over many years towards the haemophilia community. I should know as I have met with several Ministers and civil servants since 2001! The cabinet office Minister is well aware of how ill victims of the contaminated blood disaster are, so it is pretty disgraceful to let down people harmed by the state who are dependent on this money. Can you confirm receipt of this email and investigate this as a matter of urgency? I look forward to hearing from you. I will also be in touch with the Chair of the Infected Blood Inquiry of this latest situation, as well as contacting the DOH.

Yours Sincerely

Colette Wintle

Independent campaigner for The Haemophilia Community

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”.

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Contaminated Blood: Ken Clarke week at the Infected Blood Inquiry, saved documents, and who may come under “alleged liability”?

Ken Clarke who was Minister of State for Health as AIDS emerged and Health Secretary between 1988 and 1990 (Image via Yorkshire Post)

A long awaited week at the Infected Blood Inquiry finally arrives this Tuesday regarding the questioning of witness Kenneth Harry Clarke, Baron Clarke of Nottingham CH, PC, QC better known to many simply as (Conservative politician) Ken Clarke who served as Minister of State for Health (5th March 1982- 2nd September 1985) as AIDS was emerging and was Health Secretary between 25th July 1988 and 2nd November 1990. The advising forces behind ministers, the civil servants, must also come under closer scrutiny as well as the known “face at the front”.

The Inquiry is an independent public statutory inquiry set up under Chair Sir Brian Langstaff “into the use of infected blood”. Haemophiliacs (the focus of this article) are a distinct patient group with a hereditary bleeding disorder which affects clotting. Many were infected with HIV and hepatitis viruses in the 1970s and 80s through their use of factor concentrate blood product treatment (often imported from the US) given to help their blood clot. Plasma was collected from the highest risk donors for viral infections including paid prisoners, gay men, sex workers, drug addicts, also from skid-row clinics in Central America and Haiti. Some plasma was even reported to come from South Africa. Haemophiliacs were later exposed to new variant CJD through UK blood products.

The 1991 HIV Haemophilia litigation solicitors recorded the following details which occurred just a few months AFTER Clarke became Minister of State for Health, though other non haemophilia AIDS cases preceded this:-

July 6th 1982, American reports of pneumocystis pneumonia in a haemophiliac: evidence of cellular immune deficiency: possible transference through blood: public health service advisory committee formed (First haemophiliac victim of AIDS.)

December 1982, Report of an occurrence with AIDS after a blood transfusion

January 13th 1983, A number of articles in the New England Journal of Medicine on Haemophiliac and AIDS. Lederman reports widespread immunity abnormalities, possibly linked to AIDS. Menitova states that AIDS has a 40% mortality and reports widespread cell abnormalities. Desforges recommends cryoprecipitate rather than concentrates because of the risks of AIDS.

Jan 15th 1983 Dr Jones (UK) reports in the Lancet common cell immunity in haemophiliacs, which is possibly linked to AIDS

March 23rd 1983 FDA requirements on blood donation introduced

July 13th Biological Subcommittee of CSM recommends very little is done about the threat of AIDS to haemophiliacs.

August 1983 First UK haemophiliac dies of AIDS from US factor VIII concentrate administered in December 1981.

September 1st 1983 DHSS publish first blood donor leaflet

The key points on which the UK government are allegedly liable with regard to AIDS including dates are included in the document. In terms of alleged liability the litigation papers also highlight the serious failings by government to act on hepatitis infection known about many years before HIV arrived on the scene. The importance of tracing back of haemophiliacs treatment batch numbers to source was expressed as a key tool to assist in establishing liability.

On the 14th November 1983 Hansard records the following question from Edwina Currie:-

Mrs. Currie

asked the Secretary of State for Social Services what advice has been given to hospitals concerning the use of imported factor VIII in the light of recent concern about its possible contamination with the causative agent of acquired immune deficiency syndrome.

Mr. Kenneth Clarke

“There is no conclusive evidence that acquired immune deficiency syndrome (AIDS) is transmitted by blood products. The use of factor VIII concentrates is confined almost exclusively to designated haemophilia centres whose directors and staff are expert in this field. Professional advice has been made available to all such centres in relation to the possible risks of AIDS from this material.”

On January 17th 1984 Ken Clarke states as recorded in Hansard,

“Three cases (of AIDS) have occurred in patients with haemophilia who had been treated with blood products. No cases have resulted from blood transfusion itself.”

What most victims want from a public inquiry is “truth and justice” and there should be no compromise on that. In order to achieve this, ALL relevant evidence on what was highlighted BY CAMPAIGNERS in the 1980s to be a “unique tragedy” for haemophiliacs and their families must be considered as opposed to being “cherry picked” to suit certain agendas or to carry out “damage limitation” and protect involved parties. It was this campaigning on the unique circumstances of haemophiliacs, later accepted by government, that led to the granting of the Special Status on which an ex-gratia payment was made in 1991. I pray this Inquiry will do its job thoroughly and leave no stone unturned. Haemophiliacs have been let down so badly on so many occasions, by so many people, they no longer know who to trust!

Much of the focus from the Inquiry and from campaigners has been on what government and other official bodies knew about the dangers of blood products and what they did or didn’t do about it. It is certainly crucial to look at Treasury and Department of Health documents from relevant time periods when action could and should have been taken and also the later government legal opinions on liability surrounding the 1991 HIV haemophilia litigation which ended in an out of court “ex-gratia” payment. Compensation based on “loss and need” was NEVER awarded.

HOWEVER in terms of the ensuing litigation, these historical government documents cannot be viewed in isolation from what government evidence was also exchanged and held BY solicitors in the legal “discovery” process that were acting FOR haemophiliacs, what legal teams knew and how they acted on this key material to assist their clients in achieving truth and justice (or not). To date, very little attention has been paid to this aspect by the Inquiry and hopefully this will change as the months go by.

I am one of the few haemophilia campaigners that has had the advantage of reading many government documents through large amounts of the “discovery” material exchanged between government and haemophiliacs legal representatives during the HIV litigation. This was some years AFTER my late husband Pete, a severe haemophilia signed a controversial Undertaking (which I called the “waiver”) which was part of the HIV settlement that ended in 1991. The waiver was a clause ensuring haemophiliacs could not take legal action for a further virus, hepatitis C, previously known as non- A, non- B hepatitis. Pete signed this without knowing he was infected with hepatitis C and as a later legal opinion highlighted, without “informed consent” as he was not told of the risks from this infection, nor were haemophiliacs shown key government documents at the time of the litigation showing alleged government negligence. I set up the campaign group Haemophilia North in 1994 which later became Haemophilia Action UK to fight for a public inquiry so all relevant documents could be considered. My husband was the first haemophiliac to obtain legal aid to challenge the hepatitis waiver legally.

It is important to note that solicitor Anthony Mallen of Deas, Mallen, Souter, Newcastle wrote a letter dated 29th June 1989 within the context of the HIV litigation to another solicitor attaching extracts from articles in which he highlighted that he “enclosed a list of 570 articles which deal with hepatitis as a consequence of blood products, particularly factor VIII being used”.

He goes on to say,

“The articles clearly show the risks in any of the hepatitis viruses being passed by Factor VIII. Obviously my own researches, which had a different slant, are reflected in the extracts. However examination of the articles simply by title may assist you with the assessment of the consequences of liver damage.

The list of articles was extracted from Index Medicus, a publication which lists virtually all medical articles throughout the world. I cannot, frankly, remember the number of articles that there were published regarding the hepatitis risk but I am not exaggerating in saying that it literally runs into thousands. The initial examination (which also covered such subjects as AIDS) totalled about 80,000 articles and an initial scan of the titles reduced that to about 1,500 which were of importance to me. From that 1,500 articles a more detailed trawl was made so as to exclude various foreign publications of which it could possibly be said that an averahe haematologist would not be familiar with.”

Over the years I have managed to save both solicitors documents and large tranches of government documents during several different time periods and fought for the government papers to be released into the public domain. Some were then published onto a Department of Health website and when this was taken down were later transferred to the National Archives at Kew following my writing of an awarded dissertation on Contaminated blood in 2006 referring to these papers. They are now available to the Infected Blood Inquiry, and through Freedom of Information Requests (FOIs) to all campaigners and other interested parties, though the failure to correctly reference to myself in terms of discovery and how they came to be saved may turn into yet another legal battle and forms part of the continuing “cover-up” where I am (conveniently for many) written out of Contaminated Blood history. A forthcoming documentary will address these concerns.

Over the past years since the Inquiry was set up in 2017, many of these saved documents have been used by the Inquiry QC’s to question witnesses and by haemophiliacs using FOI and their lawyers appointed to represent them at the Inquiry. It is important to note that government admitted on numerous occasions over the years in writing to myself and others to destroying many of these important documents but are now able to produce so many for the Inquiry only because I saved and returned them back to government, some directly to their legal department. However, government then went against the commitment given to my solicitor and I not to trash further papers by destroyed the accompanying letters from solicitor Paul Saxon where I had instructed him in relation to the return of certain papers. Fortunately I maintained copies of the letters for my own records. Other large tranches of paper evidence only survived because I fought for release of these documents from the 1990s including those that were used in the writing of the “Department of Health, Self Sufficiency in Blood Products in England and Wales Report: A Chronology from 1973 to 1991”. Other tranches were saved over the years with the help of the late Sir Patrick Jenkin who fought alongside myself for no further government documents pertaining to blood and blood products to be “inadvertently” destroyed. The surviving papers were later used in both the Archer and Penrose Inquiry Reports.

These saved documents have been well utilized by other haemophilia campaign groups including Tainted Blood to produce their Timeline as highlighted by the late Haydn Lewis who was quite open with me about acquiring this evidence through FOI after I had returned the papers to government. However since his death, all acknowledgement to Pete and I for our work to release these documents (which we ourselves had previously used for some years) into the public domain to help others has mysteriously disappeared and information about the TB Timeline has been retrospectively changed for the new updated website.

It is one thing for a document only to be available to a minority behind closed doors or under confidentiality arrangements and quite another for them to be freely available to anyone who applies under FOI. Where the Inquiry is at a disadvantage, is that it may not necessarily know when documents were FIRST available for public viewing which is very important. This knowledge is of course well known to campaigners like myself who were responsible for many of these documents first being released into the public domain. Also, when the Inquiry shows key documents on screen to witnesses during questioning there is no connection being made so far as to which of these documents were held by our lawyers in the 1991 litigation which is so important. Again this is often known to myself having viewed and copied key evidence from the officers of solicitors to inform the writing of my dissertation research and releasing them as highlighted in our BBC Newsnight film which was transmitted on April 17th 2007. Documentary film maker Mags Gavan (who worked on Newsnight alongside Sue Watts and I) continues to film my journey with the documents for a future film production examining the ongoing cover-up and continued attempts to block my evidence and rewrite history.

So regarding these documents, there are 2 key areas that are very important:-

  1. Who knew what and when of the risks of factor concentrate treatment in government and what was done by government and other bodies to protect haemophiliacs prior to their infection, what warnings were given and if infected to prevent further reinfection and what was done to educate and support haemophiliacs post infection. In addition, what evidence was shared by government with lawyers of haemophiliacs during the discovery process of the HIV litigation.
  2. What government evidence was held by lawyers for haemophiliacs regarding their infection in the process of discovery during the HIV litigation and what did legal teams do to bring forward ALL the key evidence and inform haemophiliacs of the FINAL legal opinion stating their chances of winning and what key evidence was WITHHELD from litigants (as I later discovered).

Some solicitors representing haemophiliacs in this Inquiry may be at a significant disadvantage having never fully seen ALL the evidence, that is from both government and that held by the HIV litigation lawyers. After the 1991 HIV litigation concluded, both sides agreed to destroy key documents within 8 weeks and the hepatitis waiver was put in place to prevent further litigation for HCV. One firm (for whatever reason) did not follow these instructions which led to my discovery that these documents STILL existed in that firm’s offices at least! So when I am watching evidence live streamed by video directly from the Inquiry, time after time I am confronted with documents that I KNOW were held by lawyers for haemophiliacs in 1991 and should have gone to court at that time. This connection is not yet being discussed by the Inquiry.

The very last legal opinion I saw before haemophiliac signed the controversial hepatitis waiver was an opinion that haemophiliacs’ chances of winning for those that had received US blood products had “significantly increased” and that crucial evidence highlighting the risks (known to be held by government, indeed ADMITTED BY GOVERNMENT in the discovery phase) had not been seen and considered by all lawyers acting for haemophiliacs and that basically it was now too late to legally address this issue. This was never shared with clients. A very concerning note from one lawyer read, “I can no longer lie to my clients”.

Truth can be inconvenient and disturbing. It may not always be as we imagine. Liability has to be carefully considered depending on what an individual or bodies may be liable for and during different time periods. Liability may sometimes be shared and include some unlikely partners.

So I would urge caution in jumping to conclusions as to alleged liability, who is responsible and over what and in which particular time period. I have for many years as a campaigner alleged government negligence but I believe there is a shared negligence in some areas. Going to court now may not be quite so straightforward as some legal firms might believe in terms of the currently “stayed” case in the High Court however other potential litigation on Contaminated Blood is a different story as it is separate to the original HIV litigation as new evidence from the US came to light through further litigation initiated by my husband in the following years.

Regarding the stayed case, I ask 2 key questions…

1) Have solicitors viewed and presented ALL evidence to the High Court, including what evidence was known and held by solicitors FOR haemophiliacs who litigated against government in 1991?

2) Have these lawyers been honest about actual FIRST dates of discovery of evidence and when evidence was FIRST put into the public domain as opposed to rehashed stories being put into the media by some irresponsible persons years AFTER the original discovery dates?

To come to evidence for this week, I note the campaign group Factor 8 has released some documents pertaining to discussions over the HIV litigation in the late 1980s/early 1990s which Jason Evans a new campaigner obtained through FOI. For me, there is nothing particularly startling there regarding government discussions/advice over means testing of victims, chances of haemophiliacs winning their case, and the hepatitis waiver but that is because I have also read our lawyers responses to these very same issues during the same time period and have known what documents they held for years!

I will be viewing Ken Clarke’s evidence with great interest this week, it will also be considered by myself in relation to what evidence our own lawyers acquired from and about government decisions and actions which they held and pondered over at the time of the HIV litigation which I understand began around 1987. In August 1990, New Scientist reported the following,

There are, according to the Haemophilia Society, about 5000 haemophiliacs
in Britain. Of these, 1200 are now contaminated with HIV, after being treated
with the clotting agent Factor VIII which was subsequently found to be infected
with the virus. At the end of July, 207 of these had developed full-blown
AIDS, and 137 had died.

In May, Margaret Thatcher rejected an appeal from the Labour MP Alf
Morris that compensation should be decided through a negotiated settlement.
Last week, it was reported that the same request had been made by Sir Donald
Acheson, the government’s chief medical officer, but was being opposed by
the Treasury – and health secretary Kenneth Clarke – on the grounds that
the government might escape legal liability.

The 1991 litigation concluded in a far from satisfactory result for my husband and the estate of his brother Stephen who died of AIDS in 1986 even before litigation began.

Years later on the 3rd March 2018 the Guardian reported,

In 2007, after a freedom of information request, Tainted Blood received hundreds of documents relating to the scandal. In one, dated 22 January 1985, Clarke had written: “Before we all panic further, it is presumably the case that the ending of the collection of blood from homosexuals greatly reduces the risk from blood collected in this country. Also, as only haemophiliacs have died and they may have had factor VIII from American blood, is it the case that we have not had one Aids fatality from blood donated in this country yet? Do we need this and heat treatment of the blood?” The suggestion seemed to be that heat treatment may be one expensive precaution too many. Not surprisingly, the discovery of this letter many years later caused great hurt in the haemophilia community. Gorman spits out the phrase: “Only haemophiliacs.”

Between 1988 and 1990, Clarke was secretary of state for health. In 1990, he was advised by the then chief medical officer, Sir Donald Acheson, to settle claims with those affected out of court, to prevent the government being forced to hand over sensitive documents. It was reported at the time that Clarke was reluctant to settle, insisting haemophiliacs had to prove their case in court.

These were part of the same documents I had saved, following the writing of my dissertation and released into the public domain, making them available through FOI.

In this Inquiry, we need the truth, the whole truth (as far as it is available after all these years)… and nothing but the truth however strange and concerning that truth may turn out to be! Alleged liability may not only lay with government and related bodies but with lawyers representing haemophiliacs who sat on the very documents showing alleged liability that they failed to consider and act upon, (some of which I submitted and are now being used by the Inquiry) failing to obtain “informed consent” in relation to the hepatitis waiver and on their own admission, lying to their clients! When government settled with an ex gratia payment, haemophiliacs were only weeks away from hearing these allegedly incriminating documents being produced to a court, some very damning indeed. Much delayed and “SUBSTANTIAL” compensation must now be paid to haemophiliacs and their loved ones although this comes decades too late for many haemophiliacs already deceased. As Health Minister Anne Milton stated to fellow campaigner Colette Wintle and I during a meeting at Westminster in 2010, “haemophiliacs are a unique patient group requiring a unique solution.” We wait to see what is finally delivered!

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”.

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Notice by Health Commission of Islamic Emirate of Afghanistan concerning dereliction by some health contract NGOs

Post via Islamic Emirate of Afghanistan March 20th 2021

Our people are facing a host of difficulties in the country, and health related problems is an issue that has constantly plagued our compatriots and which requires the special efforts and extra attention and coordination among staff members. But despite such immense challenges, we must unfortunately say that some contract NGOs that have assured all health-related organs and acquired adequate funding by assuming full responsibility for certain proposals, have still failed in discharging their obligations as required, are neglectful in their duties and when summoned to a meeting, conjure various excuses to evade responsibility. This dereliction and evasion of duty then becomes a source and lays the groundwork for embezzlement and administrative corruption, which in turn is an even greater tragedy that destroys all values of a society. Therefore, the Health Commission cannot remain silent any longer and will not allow anyone to lay the groundwork for embezzlement or administrative corruption, hence it notifies all NGOs to take into account the following shortcomings and continue their activities only after addressing them:

1 – To fully staff all health and service personnel as per the contract and proposal.

2 – To deliver medicine, medical kits and necessary equipment to all relevant clinics on time for which it has taken on responsibility and received funds as per the contract and proposal.

3 – The quality and quantity of medicine has not met the standards stipulated in the proposal therefore it is necessary they accept responsibility and meet the quality and quantity standards of medicine because the use of substandard medicine exposes patients to high risks and worsens their condition.

4 – Commitments in referring patients have not been met, hence referral systems must be activated and patients that meet criteria must be referred to clinics where treatment is possible.

5 – Salaries have not been paid to doctors, nurses, caterers and other staff employed in clinics and health centers on time which has resulted in these workers not executing their jobs properly and clinics facing paralysis.

6 – Responsibilities outlined in contracts related to repair work of clinics and health centers have not been properly met as repair work has been delayed for protracted periods. If proper inspection and care is not taken, majority clinics will face serious deterioration issues in which case they will need to be completely rebuilt from the ground up.

7 – In conclusion, the allotted budgets have not been used on the specified objectives despite the fact that they have taken on commitments at the top of the contract and have gained permission on the basis of these commitments to operate in areas under the control of the Islamic Emirate.

 8 – As multiple meetings have taken place with some contract NGOs with regards to addressing the above shortcomings and they have still failed to meet their obligations despite repeated promises to do so, therefore the Health Commission of the Islamic Emirate will wait for all contract NGOs to honor their commitments and address their shortcomings until mid-April 2021.

If they realize their responsibilities by the deadline, change their attitudes, act on their commitments and discern problems faced by people in health sector, then they may continue their activities and we shall cooperate with them in every aspect. But if they do not alter their attitudes and persist in infractions and negligence, then the Health Commission will make a final decision regarding such NGOs after thorough investigation and comprehensive evaluation. And if God forbid, any NGO fails in accountability, then it is possible their activities will be suspended and their chiefs introduced to judicial organs of the Islamic Emirate.

Health Commission of the Islamic Emirate of Afghanistan

06/08/1442 Hijri Lunar

30/12/1399 Hijri Solar       20/03/2021 Gregorian

END

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”.

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Contaminated Blood: Amnesty International film hypocrisy after failing victims for over 3 decades

Amnesty International failed founding member Lord Archer whose report on Contaminated Blood was published in 2009 as well as campaigners who fought for justice for over 3 decades

Longstanding contaminated blood campaigners first wrote to the so called human rights group Amnesty International asking staff to take up their cause and investigate abuses against haemophiliacs in 2000 but to no avail. Carol Grayson was left astounded when she was told that there weren’t any human rights violations in the UK and their focus was on cases abroad.

Year later in 2015 she wrote again alongside fellow campaigner Colette Wintle who sent a separate e-mail detailing her concerns but Amnesty refused to engage on this issue despite Lord Archer of Sandwell, a founding member of Amnesty, residing over the privately funded Archer Inquiry to investigate the infection of haemophiliacs with HIV and hepatitis C and the impact on them and their families. Finally after years of cover-up, the Infected Blood Inquiry (the UK’s biggest ever Inquiry) was set up in 2017 and is presided over by Sir Brian Langstaff.

On the 15th June 2012, Amnesty published an obituary to Lord Archer containing the following words:-

Amnesty International paid tribute today to Labour politician and barrister Lord Archer of Sandwell QC, who died on 14 June 2012 aged 85. He was one of the human rights organization’s founding members.

Though not directly involved in the actual launch of Amnesty International in May 1961, Peter Archer was a founding member of the original Amnesty International Committee along with Peter Benenson, Louis Blom-Cooper, Eric James and Peggy Crane, and was the movement’s Chair for a period in the early 60’s.

He remained a steadfast supporter of Amnesty International for the rest of his life.

Kate Allen, UK Director of Amnesty International, who met and spoke with Peter Archer on several occasions, said:

“Peter Archer supported Amnesty throughout our 50 years of existence and always made time to give me and my colleagues the advice and support we needed. He worked hard supporting our Capital Appeal for the creation of the first ever Human Rights Action Centre, which opened in Shoreditch early in 2005.

“Peter’s commitment to human rights and to Amnesty International over such a long period are something the Amnesty movement will miss and for which we will always be grateful.”

https://www.amnesty.org.uk/press-releases/obituary-lord-archer-sandwell

Amnesty was so grateful, they couldn’t even be bothered to support Lord Archer to bring justice to the haemophilia community, failing him at every turn.

Recently Amnesty International was sent a Rule 9 request asking staff to account for their actions (or lack of them) in relation to Contaminated Blood when they have spoken out and written statements in support of the following causes, prisoners with hepatitis C in Egypt, HIV/AIDS globally (except where UK haemophiliacs were concerned) Windrush, Grenfell, Hillsbrough, Coronavirus and LGBTI rights. It seems everyone but the haemophilia community had rights

It is up to the Inquiry Chair whether he makes the Rule 9 response public but campaigners already know Amnesty took no action whatsover.

Campaigners wanted Amnesty to be asked the following:-

  1. What written representation did Amnesty International receive over the past 20 years from Carol Grayson and Colette Wintle on alleged human rights abuses regarding Contaminated Blood and the Haemophilia Community.
  1. What has Amnesty International actively done to investigate alleged human rights abuses on Contaminated Blood regarding the haemophilia community and support sick and dying victims in the UK.  

Now in an act of extraordinary hypocrisy, Amnesty International has suddenly nominated a documentary “In Cold Blood” on the Contaminated Blood scandal for one of its own media awards. Ironically, the film itself is under scrutiny and has attracted criticism due to new campaigners rehashing old evidence presenting this as if newly found and the failure to reference the correct timeline of discovery. This does the campaign no favours when documents featured in the film were in fact presented in face to face meetings with government ministers years earlier who chose to ignore evidence and block research to avoid accountability.

Today, (March 21st 2021, the Sunday Times has run an article titled,

“Compensation at last for lives ruined by NHS contaminated blood scandal”

After four decades the government accepts liability for the worst treatment disaster in the health service’s history

https://www.thetimes.co.uk/article/compensation-at-last-for-lives-ruined-by-nhs-contaminated-blood-scandal-27gb6fjmx

The Times contains the usual frustrating inaccuracies by journalist Caroline Wheeler. Campaigners will wait to see more before making further comment… as the saying goes, “the devil is in the details”!

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”.

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Contaminated Blood: Gross double standards by police in relation to two poisoning cases

Poison: Any substance that can cause severe organ damage or death if ingested, breathed in, injected into the body or absorbed through the skin. Many substances that normally cause no problems, including water and most vitamins, can be poisonous if taken in excessive quantity. Poison treatment depends on the ‘substance.

Medicine.net

In 2010 it was reported in the media that a number of police officers that had eaten contaminated chicken and tuna sandwiches ordered from a café in Birmingham, England became very ill with food poisoning. There was a criminal investigation immediately though the poisoning is described as being “inadvertent”.

Some officers end up in hospital though “none was admitted overnight” according to the Express newspaper. The police were described as “mentally scarred and even feared they would die” through this incident which was judged to have been “avoidable”. Fortunately, no-one does die, HOWEVER the pensioner who made the sandwiches which the police ate, faced 4 charges of breaching food hygiene regulations and received a 4 month suspended sentence, a fine (which she could not pay) so instead was electronically tagged with an overnight curfew. The woman was also ordered to pay costs. The point being, this incident was taken seriously, was investigated by the police and there were consequences for the woman’s actions! (See following link)

Police were ‘poisoned’ by food from filthy café (Express, Dec 8th 2010)

“A CAFE owner inadvertently poisoned 47 police”

https://www.express.co.uk/news/uk/216110/Police-were-poisoned-by-food-from-filthy-cafe

In an incident years earlier, around 4,500 UK haemophiliacs were given contaminated blood in the 1970s and 80s in the form of factor concentrates made from pooled plasma to treat a condition where their blood does not clot properly. This so called “miracle” treatment allegedly violated all kinds of safety rules, breached by both governments and pharmaceutical companies. The blood of haemophiliacs became poisoned with HIV and hepatitis viruses plus they were later exposed to new variant CJD.

Over 3,000 haemophiliacs died in the most horrific way, the rest survive but remain extremely traumatized and in very poor health which affects them not only for a few days but for the rest of their lives and has a long-term impact on their families also. HOWEVER with this incident, unlike the later police poisoning case, despite haemophiliacs and their families going to the police to report an alleged crime, there are no proper criminal investigations, no prosecutions of any kind and not even suspended sentences!

The UK Contaminated Blood scandal was initially seen as an “inadvertent” infection by government HOWEVER Health Minister, Anne Milton, later removed this word admitting it was incorrect and agreed it could no longer be used. In fact, Secretary of State for Health, Jeremy Hunt had to apologize to the widow of a haemophiliac for using the word in a letter to her written on this tragedy.

The question is….Did the first incident only get investigated because it affected the police? Don’t the lives of disabled persons matter? The complacency over what happened to the haemophilia community is deeply disturbing. How can two cases be treated so differently? It smacks of gross double standards and a complete lack of accountability regarding the devastation inflicted upon a vulnerable population through a case of mass poisoning which affected a large percentage of a distinct and now severely depleted patient group. Ironically this could have been largely prevented had the plasma companies and governments here and abroad adhered to strict safety measures regarding the collection of blood and held off introducing factor concentrates onto the market until a way could be found to virally inactivate hepatitis!

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”.

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