Contaminated Blood: Don’t “woke” us too far, haemophiliac women and girls bleed too and in different ways say Grayson and Wintle

Colette Wintle who has spent her entire life managing haemophilia and the misogyny that surrounds it
(Original image, via Colette Wintle)

For decades women whose blood had a clotting deficiency were told even by some care providers that they could not be haemophiliacs. WRONG!

Although most haemophiliacs with the inherited bleeding disorder are men, there are female haemophiliacs too, though only officially recognized more recently.

In November 2018, Mike Makris, Professor of Haemostasis and Thrombosis in Sheffield, UK tweeted,

There are 920 female patients with #haemophilia in the UK (652 A and 268 B). The new ISTH SSC definition recommends that female carriers with FVIII/IX levels of less than 40% should be considered as having #hemophilia

One of which is this author’s campaign colleague of nearly 3 decades, Colette Wintle who is a female haemophiliac infected with hepatitis B and C and exposed to vCJD through her factor concentrate treatment taken to help stop bleeding. Many haemophiliacs were infected during the 1970s and 80s when blood was taken from virally high-risk donors such as drug addicts, gay men and sex workers and plasma products were imported from the US. As well aa the many problems of living with multiple viruses, Wintle has long highlighted the difficulties of being accepted as a haemophiliac in a misogynistic environment where even some male haemophiliacs have been confrontative and denied her medical status.

Regarding female haemophiliacs, Rare Disease Highlighter stated,

Miller and Bean, in their study published in Haemophilia on the genetic causes of hemophilia in women and girls, concur. They wrote, “The dogma that hemophilia affects males and is transmitted through unaffected females has over centuries hampered the recognition that women and girls with hemophilia may bleed as significantly as affected males.”

It was only around the mid-20th century that the medical world began to recognize and discuss cases of female hemophiliacs. 

The Centre for Disease Control state,

Hemophilia can affect women, too

Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of hemophilia. A female carrier can also pass the affected X chromosome on to her children.

Sometimes females with bleeding symptoms are not tested for hemophilia because there is often a misbelief that women can’t have hemophilia but can only be carriers. Thus, women with hemophilia might not get an accurate diagnosis. Although it is rarer for women to have hemophilia when compared to men, women can also have the condition. It is important to raise awareness about this fact to help women with hemophilia receive the care and support they need to live healthy lives.

Wintle who helps inspire others and was instrumental in working with the UK Haemophilia Society over 2 decades ago on their campaign titled “Women Bleed Too” has often highlighted there are some differences in the way female haemophiliacs bleed compared to men sadly often downplayed or forgotten. Here is Wintle’s experience of being a female haemophiliac in her own words.

Life with a bleeding disorder as a woman

In current climes women and girls are having to fight harder than ever before for recognition of their gender and biological sex. So it is now even more important that as girls develop into womanhood, and adapt to the natural evolvement of physiological changes in their bodies, they are supported through their experiences with periods, childbirth and menopause. This is especially important for females who have inherited bleeding disorders such as Haemophilia A, Haemophilia B, Factor X1, and Von Willebrands. All of these bleeding disorders impact on the quality of their lives, and they are particularly vulnerable in the healthcare sector where knowledge and understanding of these conditions has not received the recognition they so deserve in comparison to males with inherited bleeding disorders.

I am a female haemophiliac who was born into a family with a long history of the condition Haemophilia A, commonly known as Factor 8 deficiency. I was diagnosed at the age of three in 1962 at a time when the medical profession only recognised women as carriers of Haemophilia but not symptomatic of the condition! In my family, a well- respected haemophilia consultant researched my family history and discovered evidence covering a 200 year period of female relatives who had bled far more profusely than their male counterparts! Incredibly, it has taken until 2021 for the medical profession to finally accept and write about female haemophilia. Throughout my life I have received poor substandard treatment and suffered unnecessarily due to the ignorance and patriarchal attitude of many haemophilia clinicians, who thought they knew better than I,  living with the condition of Haemophilia. I hope that by speaking out over my lifetime and challenging the medical fraternity it has influenced the thinking and attitude towards women who bleed.

This was my experience of growing up with Haemophilia. When I was a child I was as adventurous and active as any other child and inevitably suffered from accidental cuts and  bruising and I experienced daily nosebleeds of varying severity. Although I was registered with a Haemophilia centre in Glasgow, I was never offered any haemophilia treatment, so I had to deal with small joint bleeds, muscle and tissue bleeds, and on one occasion had substantial bleeding from a dislocated elbow joint without any medical intervention. I spent months out of school with a substantial bleed that rendered my arm useless. I recall it was black from wrist to shoulder and twice the size of my other arm.

When I started menstruating at the age of thirteen, I bled for two weeks out of every month and over three years became severely anaemic. Each of these experiences had an impact not just on my health, but  on my schooling both in primary and secondary education. It alienated me from social interaction with my contemporaries and I struggled with my self- esteem and confidence. At no point was I ever provided with specialist medical support, advice or treatment! It was only after years of persistent problems with tonsillitis that I had my first ever treatment for post operative haemorrhaging.  I was treated with clotting factors (which I discovered 26 years later were imported from the US) and subsequently developed the life changing condition  of chronic Hepatitis. I had been exposed to Hepatitis C!

Further need for blood clotting treatment in 1982 and 1985 resulted in reinfection with hepatitis B and C placing my liver under additional attack and now co- infected with Hepatitis viruses. During the many hospitalisations throughout the 1990’s, I repeatedly pointed out that the level of bleeding I was experiencing was disproportionate to the diagnosis of being a mild haemophiliac, I insisted on the doctors revisiting the genetic diagnosis from 1962 and was found to be carrying a second bleeding disorder—- Factor 11. My instinct had been correct!  I had for many years been undertreated and suffered blood loss that could have been prevented. As a young woman I had to suffer in silence for years and deal with the indifference of the doctors who were charged with my medical care.

Even in childbirth I was neglected by the medical profession.

Throughout my first pregnancy I was abandoned by the local healthcare providers without an assigned midwife because I resided outside of the health authority district in charge of my haemophilia care. At that time, I was registered at a haemophilia unit in London as there was not a local unit. Subsequently, I had very little care or consultation with anyone other than my GP until nearer to my due date. My daughter entered the world three weeks early and I was forced to make a stressful three hour journey to a north London hospital whilst in labour. Due to complications,  I underwent an emergency caesarean. Due to the geographical distance between home and hospital I was separated from the support of my family and husband.

During my two weeks incarceration in the hospital, I received extremely poor and often non- existent nursing care, which resulted in me suffering an internal bleed on top of my caesarean wound. It took a week for the doctors to attend to it, scan and treat me. Because of this appalling lack of care, I was forced to remove my IV line delivering much needed treatment, because there was simply no one to take care of my new baby, who was left in a cot at the side of my bed. What should have been a wonderful experience turned into a miserable one and reduced me to tears. I struggled to recover from this for a long time afterwards, and this was in addition to also suffering the symptoms of an ongoing liver condition!

As time went on my health deteriorated and I was forced into early retirement from my job as a nurse. Many other serious illnesses followed and major surgeries including the loss of an ectopic pregnancy and the loss of a twin pregnancy. At no point was I ever offered counselling or practical help but had to soldier on as I had previously. As my liver disease progressed, I was encouraged to undergo anti- viral chemotherapy treatment to eradicate the Hepatitis virus. I was left to administer the treatment by self- injecting with Interferon and Ribavirin medication. It was a terrible experience physically, mentally and emotionally with no assistance whatsoever from any healthcare workers. The treatment caused extreme physical damage. I was in constant pain, and I also developed other medical conditions. Worst of all, it caused an early onset menopause.

Yet again there was no available access to care, advice, counselling, or medical treatment. I experienced numerous unpleasant symptoms and side effects such as night sweats, itching skin , mood swings, increased fatigue, hair loss and flooding until many years later I was offered a coil insert which controlled blood loss. I had to put up with all these unpleasant symptoms over a period of twenty years.

When I consider my lifetime of living with haemophilia and all that I endured at the hands of health care providers, I realise that it has been a long continual battle to get the level of care I should have received. Much of this caused by the resistance of the many doctors to acknowledge my experiences and who dismissed and ignored my obvious medical needs. As a woman living with haemophilia, I believe even more strongly now that we must remain vigilant in protecting  future generations of women with inherited bleeding disorders, and their right to access the same standard of healthcare available to men. In recent times there has been a shift in attitudes which I am very glad is evident in the research being published and reported in medical literature currently. There is greater awareness of woman with bleeding issues now,  but it is vital that we ensure going forward,  that no one should experience the battle for professional medical care as I did.

Colette Wintle

End

The NHS “Overview” of Haemophilia largely avoids mentioning biological sex in its online information pages other than to say, “Haemophilia is a rare condition that affects the blood’s ability to clot. It’s usually inherited. Most people who have it are male” and advises to “avoid contact sports such as rugby.” However this alone does not help when it comes to those wishing to learn about how women may bleed as in the sections about types of bleeding, it simply ignores periods, childbirth and the menopause. (Also, to make a point, it can be highly uncomfortable indulging in any sports with a headache, painful cramping and heavy menstrual bleeding though that appears to be missed.) See following,

https://www.nhs.uk/conditions/haemophilia/#:~:text=Haemophilia%20is%20a%20rare%20condition,sticky%20and%20form%20a%20clot.

Now after years of misogynistic treatment with regard to female haemophiliacs bleeding, there are attempts to stop referring to the words “girls”, “woman” and “women” in relation to periods even if it did appear in the NHS haemophilia section. Today the Metro published an article on a separate section on menstruation in general with the title, NHS guidance on periods doesn’t mention girls or women once. The Metro states,

An NHS website about periods has triggered a debate for using gender-neutral language instead of the terms ‘girls’, ‘woman’ or ‘women’.

Bloody Brilliant was commissioned by the Welsh government and the NHS last year, costing the taxpayer £84,000.

Is this yet another way to write women out of the equation and lesson their voices? Females identify with these words and its particularly helpful in medical conditions where through biological sex, conditions may present somewhat differently in men and women such as haemophilia.

As Healthline explained…

A woman’s period and hormonal changes are the result of her natural reproductive cycle, sex therapist Janet Brito, PhD, LCSW, CST says. “The hormonal changes she endures are in preparation for possible conception. [Cisgender] men do not experience the cycle of producing ovocytes, nor do they have a uterus that gets thicker to prepare for a fertilized egg. And if conception does not occur, they do not have a uterine lining that will be released from the body as blood through the vagina, which is what is referred to as a period or menstruation,” Brito explains.

“In this definition, men do not have these types of periods.”

Individuals can present as who they wish to be, that is their choice however they can’t simply cancel out biological sex nor should they, nor the fact that women and girls will bleed differently to men through having their period, childbirth and throughout the menopause and the implications and complications that may bring. Female bleeders and service providers need to educate themselves, learn how to manage these times, access and provide support and language is important. So, when so called “woke” crosses the line and starts to verge on the damaging and sometimes dangerous, and biological facts are obliterated, then for the sake of good health, woke is best cancelled out!

Ginger Rogers once said about dancing… “I do everything the man does, only backwards and in high heels!” In terms of haemophilia, women get most of the bleeds men get (bar those related to cock and balls) but in addition add on periods, pregnancy and the menopause, whilst dealing with an often male orientated plan of care and then facing misogyny!

Link, for further Information on women who bleed

How bleeding disorders can affect women (UK Haemophilia Society)

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: Susan Deacon missed an opportunity to view campaigner’s damning evidence in 2000 which should have led to a Public Inquiry.

Susan Deacon who recently gave evidence to the Infected Blood Inquiry
(Image via the Inquiry)

On Friday the 28th July 2022, Susan Deacon gave evidence to the Infected Blood Inquiry chaired by Sir Brian Langstaff which is investigating how haemophiliacs became infected with HIV and hepatitis viruses through their factor concentrate, blood product treatment in the 1970s and 80s. (It is also looking at cases of infection through whole blood transfusions though this is separate to the case of haemophiliacs.) Deacon was the Member of the Scottish Parliament (MSP) for Edinburgh East and Musselburgh from 1999 to 2007 and served as Scotland’s first Cabinet Minister for Health and Community Care following the creation of the Scottish Parliament in 1999.

From the mid 90s/early 2000s there was growing pressure across the UK for a public inquiry as haemophiliacs were finally being told they had been infected with hepatitis C as well as HIV, in many cases, the positive test results only given to them several years after being tested for HCV. This resulted in deep concern and anger from haemophiliacs and pressure to find out more regarding the circumstances of their infections and why results had been withheld.

Over two decades ago, They Work For You reported the following question put to Deacon and her response.

Brian Adan SNP

Question S1W-5627 To ask the Scottish Executive whether it will commission an independent inquiry into hepatitis C and other infections contracted from contaminated blood products in Scotland

Susan Deacon Labour

A fact-finding exercise into specific aspects of this issue has been underway for some months now. I met with the Haemophilia Society in September 1999 to discuss their concerns first hand and thereafter tasked my officials with ascertaining the facts surrounding the heat treatment of blood products for haemophiliacs in the mid-1980s. This will assess whether haemophilia patients in Scotland were exposed to the risks of the hepatitis C virus through blood products longer than they should have been, given the state of knowledge at the time. The outcome of this investigation will allow me to decide whether any further action is warranted.

The Haemophilia Society, the Scottish National Blood Transfusion Service and the Scottish Haemophilia Directors have all been asked to provide information. My officials are currently analysing the information gathered. This is a complex area and it would be premature to comment on possible outcomes until all the facts have been properly examined. I have undertaken to make the findings available to the Health and Community Care Committee and to the public.

https://www.theyworkforyou.com/spwrans/?id=2000-04-11.S1W-5627.h#gS1W-5627.q0

For long standing campaigners that were around at that time, this was instantly problematic and the following gives a broad overview of campaigning between England and Scotland at a time when Scotland had become newly devolved but dealing with infections that had occurred under a UK wide Westminster government.

The then Haemophilia Society had been slow on the uptake regarding campaigning for hepatitis C. The Manor House Group (Founded by the late Peter Mossman and the late Peter Hughes), Haemophilia North (later known as, Haemophilia Action UK, this author’s group) and Colette Wintle (Independent Campaigner) had all begun campaigning within a week of each other in 1994. It took a further year for the Society to take hepatitis C seriously and then only under pressure from the groups and with great reluctance and resentment.

When Grayson called for “compensation on a parity with Eire” in 1996 writing to the Society on this issue, the Society looked at the Eire scheme then sold out asking government for a “hardship fund” as opposed to full and proper compensation. Haemophiliacs with HIV had already received an ex-gratia payment for their infection in 1991 but had been made to sign a hepatitis Undertaking named the “waiver” by Grayson not to take legal action for hepatitis infections. It was only later in 1994 that Grayson and her late husband Peter Longstaff were told that he was infected with hepatitis C though a test result obtained showed he tested positive in 1992.

Longstaff had been tested without pre test counselling, without his knowledge and permission using blood taken to measure his clotting levels and his positive test result had been withheld. In addition, they then found out that key evidence had been withheld from litigants on the dangers of this HCV virus within the HIV litigation documents which were already known to lawyers way before their clients signed the waiver. The couple then realized that in order to take a case to court for hepatitis infection(s) they must first access legal aid to overturn the waiver showing what had happened and that this couldn’t be deemed “informed consent”. This was the catalyst that sparked their setting up a campaign group in 1994.

When the Society did launch their campaign on hepatitis C in 1995, they then made a dreadful decision to divide the haemophilia community by campaigning only for those that had been infected with HCV but not HIV, this was despite the fact that almost all haemophiliacs infected with HIV were also infected with hepatitis C. At one point when Grayson tried to enter parliament to attend a campaign event, she was confronted by the then CEO who made clear she wasn’t welcome and stated that her husband “had had his money”. What Karen Pappenheim didn’t address, was that HIV positive haemophiliacs that were now under the Macfarlane Trust which provided financial assistance had not received a penny for hepatitis C, nor was it part of the Trust deeds. Jim Cousins, Grayson’s MP at that time came out of his office to escort her into Westminster Hall.

The Society were also refusing to look at key evidence from campaigners on many different aspects of hepatitis C including the delays in bringing in a test, the testing of haemophiliacs without their knowledge and permission and the withholding of positive test results. Despite offers from campaigners to work with the Society and share emerging evidence, this fell on deaf ears by an organization increasingly defensive in its position. There was a great deal of tension between the Society and campaigners at that time, not helped by what campaigners viewed as a “conflict of interest” in that the organisation received funding from the international pharmaceutical companies linked to their infections.

In this hostile environment, Grayson and Wintle decided to form a quiet alliance with Scottish campaigner Phil Dolan who was to become a trustee of the Society and in a sense a “spy in the camp” regarding the Society’s actions and thinking. There were some signs that Scotland might be slightly “softer” than Westminster in investigating the infection of haemophiliacs and providing recompense, so they hatched a plan to release evidence through Scottish media a day after key stories broke in Newcastle where Grayson and Longstaff had just formed the Bad Blood campaign jointly with journalist Louella Houldcroft of the Journal. A decision was taken that Grayson would share her evidence with Scottish journalists that could be used cross border but local Scottish campaigners would do the interviews to provide a picture of their own experiences of infection and the issues around this locally.

The Haemophilia Society at that time was not well informed, was half- hearted in its own campaign stance for fear of potential liability issues and aggressive to campaigners attempting to investigate what went wrong. The Society had actively campaigned to continue importing US factor concentrates against safety advice, even after the advise from Dr Spence Galbraith (Public Health Laboratory Service) was to withdraw this treatment from the shelves immediately in May,1983 to avoid infection of haemophiliacs with the AIDS virus. It was against this background that Deacon was engaging with the Society but we do not know how much of this information regarding the organization’s breakdown of their relationship with many campaigners would have been known to her at that time.

Deacon’s fact- finding exercise was limited in nature and focused mainly on heat treatment. It did not appear to give consideration to those who were very likely infected with hepatitis C through their first shot of imported US factor concentrates that had been used on children at York Hill hospital and any safety violations in that regard. As haemophiliac Colette Wintle discovered, imported treatment was used on her in 1976 whilst a patient at Glasgow Royal Infirmary despite a warning letter being sent to Westminster government official a year earlier warning of the dangers of using US plasma and the increased hepatitis risk due to “high-risk” paid donors being used.

One person who did understand the dangers of US products was Dorothy- Grace Elder, Member of the Scottish Parliament for the Glasgow Region 1999 to 2003 with whom Grayson had made contact and spoken by phone As a former journalist, Dorothy-Grace told this author she had become aware of the differences in the collection of US plasma from paid donors compared to those in the UK, blood taken from better screened, volunteer donors and was determined to raise this issue in relation to those treated in Scotland.

Worried that the Haemophilia Society would only have shared limited concerns with Deacon, and withheld campaigner’s evidence sent to them, Grayson decided to write to the minister offering the opportunity to meet her, with Dorothy-Grace included, to discuss evidence that might help push for a full public inquiry in Scotland.

Grayson has shared this letter to Deacon with the Inquiry and the text can be viewed here:-

02/07/2000.                                                                                  Carol Grayson,

                                                                                                     PO Box 782,

                                                                                                     Newcastle Upon Tyne.

                                                                                                     NE99 2UW.

      Re: Haemophiliacs Infected with Hepatitis C Through NHS Blood Products.

Dear Ms Deacon,

                            I was delighted to read an article in the Scottish Daily Record & Sunday Mail Ltd June 22nd 2000 that you are ordering a report into how people in Scotland contracted hepatitis C through blood transfusions. Yourself and Dorothy –Grace Elder are to be commended for the responsible attitude you are taking with regard to this issue.  My MP Mr Jim Cousins (Newcastle) has supported my partner a haemophiliac infected with HIV, hepatitis B and hepatitis C through NHS blood products for several years now in our fight for a public inquiry and recompense. We lost my partner’s brother, also a haemophiliacs to AIDs in 1986.

     I have enclosed a letter sent to Mr Milburn asking a number of pertinent questions to which I received the extremely unsatisfactory reply enclosed! I would be grateful if you in your capacity as Health Minister for Scotland could stress to Mr Milburn the importance of answering the questions put to him and ordering a public inquiry in England into how people became contaminated with these viruses.

     May I suggest that you look at the Lindsay Tribunal currently taking place in Ireland (Tribunal updates available by e-mailing haemophiliasociety@eircom.net and requesting copies) and also the Krever report (Canada) if you have not already done so. Some of the information with regard to imported human plasma products is relevant to England, Scotland and Wales also. I think it is essential that any report looks at where the plasma was sourced. It is not good enough for the Department Of Health to claim that nothing could be done to avoid infection with HIV and hepatitis C prior to blood tests becoming available. As a qualified Senior Nursing Sister (although now a full time carer) I am appalled that plasma was collected from populations known to be “high risk” such as prisons with hepatitis infection rates 12 times higher than the general population. It was also collected from paid donors in centres in Central Africa (the epicentre of Aids), Central America, (Nicaraguans burnt their centre down it was so bad), skidrow “hotspots” of North America (highlighted in the “World In Action” documentary program “Blood Money” as far back as 1975) and at times from cadavers which is immoral and illegal.

     I have collected substantial information on “tainted blood” over a number of years and would be happy to meet with yourself and Dorothy Grace -Elder at your convenience to discuss this. I feel much of this information has been suppressed as this information has far –reaching consequences for those involved in the multi-million dollar blood industry and could be very costly for our Department Of Health!

     The pharmaceutical firms manufacturing blood products imported to the UK which should be looked into are Baxter, Hyland Travenol, Alpha Therapeutics, Green Cross Japan, Cutter, and Armour.  Some are now defunct or have been taken over and changed their names. Prisons involved in plasma collection were Arkansas (licences renewed I am told by none other than the former Governor Of Arkansas, Bill Clinton), Angola Prison and Arizona State Prison. I am in touch with campaigners in Arkansas who can provide information from both prisoners who donated to the prison plasma program and people who worked at the plasma centre. I hope I can be of assistance in bringing to light the appalling practices with regard to the lack of safety and lack of checks /quality controls on imported blood bought by the Department Of Health which has resulted in so many needless deaths in the UK as well as the exploitation of poor, sick and vulnerable groups in other countries to provide plasma for the blood industry.

     Canada now has a major criminal investigation into how so many of their haemophiliacs came to be infected with HIV and hepatitis C though imported American plasma. Canada, Italy and Southern Ireland are among those countries that have had public inquiries into their own blood services and imported treatment and provided compensation to infected haemophiliacs and their families, including widows and dependants.

     My partner has just been granted legal aid against the Department Of Health!     Over 1200 haemophiliacs were infected with HIV. 800 are now DEAD.

     95% of those originally infected with HIV are also now CO-INFECTED with hepatitis C (HCV).

     According to Haemophilia Society statistics over 4000 haemophiliacs are infected with hepatitis C alone. (MONO-INFECTED)

     120 haemophiliacs are now DEAD from hepatitis C. The majority of these deaths were from the C0-INFECTED group.

     Hepatitis C has now taken over from AIDs as the biggest killer of haemophiliacs in Europe and the United States.

     Thank-you for taking the time to read this.

                                           Yours sincerely

                                    Carol Grayson (Campaign Co-ordinator Of The 2/2 Campaign, A Second Campaign For A Second Injustice.)

Tragically, Deacon (or those in her office) did not take up Grayson’s offer and an opportunity was missed to view important evidence that should have led to a full public inquiry, evidence now being used by the Inquiry to question key witnesses.

Dorothy-Grace continued to raise her concerns over blood safety highlighted during the Health and Community Care Committee meeting on the 25th Oct 2000 attended by Susan Deacon where the following exchange took place,

Dorothy-Grace Elder:I lived through the 1980s—

The Convener:I think we all did—even Duncan Hamilton.

Dorothy-Grace Elder: I clearly remember being involved with the people who were clamouring for a heat treatment centre in Scotland. The concern was HIV, not hep C, which, as the minister correctly says, was not recognised until 1989. However, people realised that they had something exceedingly dangerous on their hands and that, often, another virus was involved. I also remember that the sums of money involved came to only a few hundred thousand pounds and that Scots pleaded with the Conservative Government to give them that to conduct the heat treatment. How can the Government today body swerve the tragedy that has occurred due to hep C subsequent to the HIV tragedy? Will the minister at least consider ex gratia payments to the families?

The Convener:Would those be technical ex gratia payments, Dorothy-Grace? I really do not think that that was a technical question. Other people are waiting to ask non-technical questions.

Dorothy-Grace Elder:People are suffering, Margaret.

The Convener:I know. The minister may answer the question.

Susan Deacon:Do you want me to answer Dorothy-Grace Elder’s question now, convener?

The Convener:Yes.

Susan Deacon:Members are asking a range of technical questions, many of which, I hope, are addressed in the report. If the committee wants to take it up, the offer remains for one of our medical advisers or perhaps the deputy chief medical officer, who was involved in the report, to come along to discuss the matter further.

Dorothy-Grace Elder referred to ex gratia payments. Compensation has been discussed quite fully. Let me differentiate between negligent and non-negligent harm. The essence of the report was to investigate whether there had been negligence during the period in question, which would require the NHS to pay compensation on the ground of harm having resulted as a consequence of negligence.

Having examined the information carefully, we have found no evidence to suggest that there was negligence, for the reasons that we have outlined and, as Richard Simpson indicated, because of the chronology of events and when medical and scientific knowledge advanced.

There is also the question of non-negligent harm. The NHS not paying compensation for non-negligent harm has been a generally held principle. That was revisited in these cases, two years ago by the UK Government, by previous Conservative Governments and now by the Scottish Executive.

Having examined the issue we do not see there being a case to change that principle in this instance. I am bound to say that all medical treatment carries a degree of risk. The issue is about the balance of risk and how we deal with it.

Dorothy-Grace Elder:We are not talking about treatment.

The Convener:Let the minister finish.

Susan Deacon:I am happy to take a further point from Dorothy-Grace Elder.

The Convener:But I am not. Nicola Sturgeon also has points to make on this issue.

By the 1st February 2001, a significant event had already taken place over the border……….a small step on the road to justice for at least one haemophiliac given US factor concentrates in Scotland.

One New Zealand child visiting his relatives in Scotland and infected with HIV in 1980 at York Hill hospital after bleeding whilst on holiday had received a settlement direct from a US pharmaceutical company. The father of the boy, Ian Reddie, had come to England and approached Grayson for advice on tracing medical records from York Hill and a search was put in place. Subsequently armed with the evidence he needed (and keeping in mind his son had never received factor concentrates before his visit to Scotland), he flew to the US to confront the company and they paid up for the boy’s infection for both HIV and hepatitis C, albeit a low amount.

On 14th March 2001 Dorothy- Grace again tried to highlight her numerous concerns regarding safety of both Scottish and US products at the Health and Community Care Committee. The following are excepts from her and other participants as follows:-

Dorothy-Grace Elder: I dare say that you have
read the written statements of the Haemophilia
Society. Can you comment on the fact that
approximately 400 haemophiliacs in Scotland
depend on the safe factor VIII? Could it not have
been considered the duty of the Scottish National
Blood Transfusion Service to adopt the tested
heat-treatment methodology that was used in
England?


Angus Macmillan Douglas: I shall ask Peter
Foster to answer that in detail in a moment. Let
me first clarify your question, which I did not hear
properly as the door opened and closed in the
middle of it. Are you asking why Scotland was not
able to introduce the hepatitis C-safe factor VIII
product in autumn 1985, although it had been
introduced for a minority of patients in England?


Dorothy-Grace Elder: Yes.

Further on she attempts to raise questions on the use of US blood products in Scotland as follows:-

Dorothy-Grace Elder: Convener, may I ask—
The Convener: No.
Dorothy-Grace Elder: —about American blood
imports—
The Convener: No.
Dorothy-Grace Elder: —of skid row blood—
The Convener: I said no, Dorothy-Grace

Dolan also contributed,

Philip Dolan: First and foremost, we believe
that an independent inquiry would examine all the
issues that have arisen in the contamination of
blood products.

(Phil Dolan would later be awarded an MBE for his services to haemophilia.)

Another old friend of this author also spoke out, the late Patricia McAughey who shared information from the Haemophilia Society on so called campaign updates as a Scottish representative (another “spy in the camp”). Pat’s husband, John (also now deceased) was to later share some of his recombinant treatment with Grayson’s husband which was kept in the event of an emergency bleed when the Newcastle Health Authority refused to supply this on the grounds of cost resulting in Longstaff taking his case to the High Court in London. (The Judicial Review was lost on the grounds that it would open the floodgates for other treatments beyond haemophilia if the case was allowed to go through and a precedent set.) Grayson would catch a train up to Scotland to receive this treatment when Longstaff was on treatment strike refusing human plasma products highlighting the need for ALL haemophiliacs to be given recombinant not just a select few through post code lottery. Here is McAughey’s comment,

Patricia McAughey (Haemophilia Society):
My husband has severe haemophilia A and
hepatitis C. His treatment was changed in 1980
from cryoprecipitate to factor VIII. We were given
absolutely no warning that that product could
transmit any viruses. Had he been given a
warning, he would not have taken the treatment. It
is false to say that all bleeds in haemophiliacs are
life-threatening—they are not. They are
uncomfortable, painful and troublesome, but not all
are life-threatening. Haemophiliacs can usually
distinguish between what will be a troublesome
bleed and what will be a serious bleeding episode.
I can speak only for my husband and me, but had
we been warned of the risks, we would not have
taken the factor VIII.

Dorothy- Grace was not one to give up and continued her questioning, with Dolan chipping in to support.

Dorothy-Grace Elder: That is one of the points
that I wanted to close in on. The submission says
that the original remit of Susan Deacon’s internal
inquiry was far too narrow, because it focused
almost exclusively on the SNBTS. The word
negligence has been used. Do you want the
inquiry to be widened into a public inquiry,
involving bodies such as the Scottish Office—as it
was at the time—the Department of Health in
London, clinicians and political decision makers of
the time? Nodding your heads is good, but will you
answer ―yes‖ for the Official Report?
Philip Dolan: The answer is yes. We asked for
that when we met the minister on 14 September
1999.
Dorothy-Grace Elder: What input did you have
to the remit? Who decided the narrowness of the
remit? Did you request of the minister that bodies

such as those that I mentioned should be
involved?
Philip Dolan: Initially we asked for a public
inquiry. We had no further discussion with the
minister after we asked for that. The minister said
that the new Scottish Executive and Parliament
would be transparent and that everything would be
out in the open. However, the inquiry was not
transparent. We did not get the opportunity for a
public inquiry. To this day, I still do not know who
the author of the report was. We can only
speculate on that.
The Convener: Another point has not been
dealt with. The report was significantly delayed. It
did not come back when we expected it to.
Dorothy-Grace Elder: I want to ask a quick
question. As has been mentioned, Mr McKissock
is too ill to be here. He intended to deal with the
matter of compensation.
The Convener: I am sorry, Dorothy-Grace. One
of your colleagues will deal with compensation;
Shona Robison will come to it in a second. John
McAllion will ask the next question.

The full discussion can be read here,

https://www.parliament.scot/api/sitecore/CustomMedia/OfficialReport?meetingId=1728

This week, Katie Scott QC at the Infected Blood Inquiry did ask a question filed through Grayson’s legal team and probably others, regarding whether Susan Deacon regretted not meeting more campaigners when she was in office. Deacon indicated that she did.

It is one of the great myths surrounding the Contaminated Blood scandal that key evidence was not available until a new campaigner Jason Evans emerged in 2017 to “discover” incriminating documents, Far from it! Certainly from 1994, campaigners were beginning to build up a mass of documents including accessing the evidence on government decision making, policy and practice from the HIV litigation. They had important papers from the 1996 settlement in Eire and key evidence from legal cases won in the US and Canada. In addition they had acquired some UKHCDO minutes, evidence of experimentation on haemophiliacs and information was being gathered from medical records and international journals. Then there was Douglas Starr’s book, Blood: An Epic History of Medicine and Commerce published in 1999. Grayson’s mother had read a review when it first came out and sent it to her which again helped to open her eyes especially on the practices of the US pharma companies.

What is also disturbing is how so many within the media have reported badly rehashed stories minus any proper referencing and ignoring the dates the original evidence was presented by long standing campaigners to government ministers. They have rewritten history in a way that has helped those responsible for the scandal and for the most part failed to deal with written complaints for media corrections from members of the haemophilia community. This is by design not accident as editors have repeatedly been shown evidence of the correct and far earlier dates of discovery that they do not want to acknowledge or publish.

It wasn’t a question of having nothing with which to tackle ministers, doctors, UK authorities and pharma companies from the 1990s onwards but that papers were either not passed to politicians, were sat on by civil servants and not addressed, or were deliberately blocked. To repeat the words of Andy Burnham, former health secretary, “this is a criminal cover-up on an industrial scale.”

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: Hazel Blears inadvertently drew attention to alleged negligence during her evidence to the Infected Blood Inquiry

Hazel Blears giving evidence to the Infected Blood Inquiry where her “line to take” re compensation with government inadvertently highlights comparisons in safety violations between US and Canada that affected and infected UK haemophiliacs
(Image, via Infected Blood Inquiry)

The author of this post Carol Grayson (Haemophilia Action UK) and her colleague Colette Wintle (Independent campaigner) both of whom have fought for decades for the victims of what Lord Winston called “the worst medical treatment disaster in the history of the NHS” were travelling by train on Friday 21st July 2022 when Hazel Blears gave her evidence to the Infected Blood Inquiry. Blears was a former Parliamentary Under – Secretary (Department of Health between 11th June 2001 and 13th June 2003. It was only after Blears gave evidence that the two were able to review the content of her testimony.

During the questioning by Katie Scott QC, a report was flagged up from the Hepatitis C Working Party which was set up by the Haemophilia Society in Sept 2001 and came up with proposals that the UK government should provide recompense for haemophiliacs infected with hepatitis C through their treatment with factor concentrates during the 1970s and 80s based on a Canadian model. Haemophiliacs infected with HIV through blood products used to treat their hereditary disorder where the blood does not clot sufficiently had already received “ex-gratia” payments in 1991 in an out of court settlement and also received ongoing monthly payments from the Macfarlane Trust. It is important to note that 99% of haemophiliacs with HIV were also coinfected with HCV but no money for this was included in the litigation agreement which contained a controversial hepatitis undertaking known as the “waiver” not to take action for infection with hepatitis viruses.

Grayson and her late husband Peter Longstaff were the first to access legal aid in the 1990s in an attempt to overcome this waiver in the hope of going to court to hold government to account for hepatitis C (and B if possible) using the HIV litigation documents that were never shown in court. Many of these documents held vital evidence not only on HIV but the dangers of hepatitis in pooled plasma known from at least the 1940s as documented in medical journals. (Though what was known by government and professionals differed considerably to what was known by haemophiliacs and their families.)

Grayson and Longstaff had a direct connection to the Hepatitis Working Party Report in that the Chairman was none other than Matt Kelly QC (Former head of the Bar Association) who was the barrister who had been approached for a legal opinion by the couple’s solicitor Denis Whalley on whether or not the waiver would stand legally and if “informed consent” was sought by Peter’s lawyers in 1991.

Grayson and Longstaff were alleging negligence by the UK government regarding his multiple viral infections and in addition unethical behaviour by the HIV lawyers in that key evidence on the dangers of both HIV and hepatitis were withheld from haemophiliacs at the time of the signing the waiver. They alleged that Peter had not been told he was hepatitis C positive so could not give “informed consent”. His medical records show he was not tested until 1992 and the result was withheld until 1994 when he was notified he was positive in the presence of Grayson (and without pre test counselling having taken place.)

Kelly had been notified that the couple were in conflict with the Haemophilia Society at that time whom they regarded as their enemy. Grayson and Longstaff made an initial visit to Chambers with Whalley where they had arranged for Kelly to receive and examine documents from the HIV litigation to back up their case. These included the Dr J Garrott Allen 1975 letter, the Oxford 1982, Rizza and Bloom “Cheaper than Chimps” letter and the 1983 Dr Spence Galbraith letter among others which the HIV litigation lawyers had never shown to clients regarding hepatitis risk and the later HIV risk and they highlighted that one of the lawyers had written in a note found by the couple in legal offices in Newcastle that “I can no longer lie to my clients”.

By the time they returned to Chambers on a second visit to hear Kelly’s legal opinion, much to their shock they learnt he was working with the Haemophilia Society that had argued to keep dangerous US products on the shelves when they should have been immediately withdrawn on the grounds of safety in May 1983. Grayson and Longstaff were horrified by Kelly’s actions and felt totally betrayed! Their expert witness Professor Eric Preston had also joined the Hepatitis C Working Party.

The subsequent report for financial assistance headed up by Kelly appears to have been a compromise to stop Longstaff from going to court as Kelly had concluded that the waiver could not have been “informed consent” and everyone but Pete knew of the dangers of hepatitis C when he signed the Undertaking.

On the first visit before Kelly had examined the HIV litigation evidence, he suggested Grayson might be mistaken as how could their lawyers behave as they did withholding key evidence regarding knowledge of risk especially when it was known to them back then that 99% of haemophiliacs infected with HIV were coinfected with HCV. On the 2nd visit to Kelly he had read the evidence and concluded Grayson was in fact correct though he did not appear too happy at what the couple had discovered.

Grayson and Longstaff knew if they were able to overturn the waiver they could then fight for compensation for hepatitis C using the original HIV litigation documents. They were concerned that Kelly was in fact engaged in “damage limitation” to protect the original HIV lawyers who were responsible for the waiver and in their own words lied to their clients! Kelly once said to the couple, did they realize that if they went to court they would be challenging 4 main medico- legal firms of that time… and what effect would that have regarding confidence in the system?

Grayson was so angry with Kelly that she sought legal advice with the then Office of Supervision of Solicitors (OSS) and was advised they had grounds for a complaint against Kelly through the relevant body that deals with barristers but Grayson was concerned as to who would believe her and Peter against the then Head of the Bar Association.

Grayson believed from the file of HIV litigation evidence shown to Kelly that it would have been difficult not to conclude that there had been alleged negligence on the part of government re infection with HIV/HCV and unethical behaviour on the part of their lawyers which may have influenced his decision to agree to head up the Hepatitis Working Party to gain some recompense for haemophiliacs? The last legal opinion from the HIV lawyers just before that case was settled in 1991 was never shown to their clients. The lawyers stated in writing between themselves that the chances of winning for those that had received US blood products had significantly increased as certain evidence not previously considered was examined, the problem was, time had almost run out. When the Hepatitis Working Party came to report in 2002, government were continuing their mantra that they wouldn’t pay compensation unless there was legal liability.

When questioned by Katie Scott QC on the Hepatitis C Working Party Report, Hazel Blear’s reluctance to consider recommendations for compensation made by Kelly and others was that it was based on the Canadian model where negligence had been found. Blears may have assumed Kelly had not seen anything that showed alleged negligence by authorities here, this author begs to differ.

Perhaps Blears was not then aware that UK haemophiliacs such as Longstaff had received some of the same Arkansas prison blood factor concentrates used on Canadian haemophiliacs. In 1998, Suzy Parker reported the following in Salon,

In a year when Arkansas scandals dating back to his governorship have returned to haunt Clinton, this one nearly toppled the government — of Canada. Arkansas’ prison-blood business created a health crisis in Canada that nearly brought down the Liberal Party government last spring. At least 42,000 Canadians have been infected with hepatitis C, and thousands more with the HIV virus, thanks to poorly screened plasma. Some of it has been traced back to the Cummins prison in Arkansas. More than 7,000 Canadians are expected to die as a result of the blood scandal.

and

More than 20,000 tainted-blood victims with hepatitis C filed a class-action suit against the Canadian government, alleging that sloppy screening protocols allowed tainted blood products from Arkansas prisons and elsewhere to make their way into Canada. 

It was Mike McCarthy (a key campaigner in Canada) who assisted Grayson sometime in the late 1990s /early 2000s regarding evidence including sending her gay donor posters where the pharmaceutical companies were targeting homosexuals for their “hepatitis rich” plasma and then used the surplus to top up the plasma pools for factor concentrates. UK haemophiliacs were on the receiving end of this plasma collected from gay men coming out of the bath houses in the Tenderloin district of San Francisco when it was known AIDS had emerged and hepatitis B was a marker for AIDS in homosexual communities? Treatment unfit for US consumption proven via batch numbers was “dumped” on the UK. Longstaff was documented as receiving US prison blood AFTER the plasma centre at Arkansas State Penitentiary was closed down on the grounds of safety, the treatment was never recalled in the UK. The US pharma companies didn’t accept Peter and Colette’s legal cases and settle without good reason.

To return to the comments made by Blears at the Inquiry, she was certainly correct regarding negligence in Canada. The BBC highlighted on 20th April 2001 that,

Canada’s Supreme Court has found the Canadian Red Cross guilty of negligence for failing to screen blood donors effectively for HIV infection.

The court upheld a decision by the Ontario Court of Appeal that the organisation did not exercise a proper standard of care in collecting blood in 1983-85.

Three suits were brought against the Red Cross by people who received tainted blood. Two of them subsequently died of Aids and the third is HIV positive.

The article goes on to highlight that because there was no blood test for AIDS at that time, the Red Cross were reliant on screening of donors as the most effective way of preventing infection. The BBC piece continues as follows,

The court concluded after comparisons with US Red Cross pamphlets on screening that the equivalent Canadian pamphlets were not as clear or effective in deterring high-risk donors.

An American Red Cross pamphlet issued in March 1983 warned sexually active gay men against giving blood because they were in a high-risk group for contracting HIV infection.

It said that people might be carrying the virus even if they felt in good health.

The Canadian pamphlet, however, merely focused on whether the donor felt healthy.

http://news.bbc.co.uk/1/hi/world/americas/1286705.stm

In a twist of irony, Blears vehement rejection of any UK government negligence and liability and focus on Canada has in fact inadvertently drawn Grayson’s attention to a fundamental flaw with US screening. in terms of the collection of plasma linked to the pharma companies (as opposed to the Red Cross) that relied on prison blood at Arkansas State Penitentiary right up to 1992. This flaw affected UK haemophiliacs.

Grayson acknowledges the albeit delayed attempt of the pharmas and the CDC to screen out gay donors in 1983 in the US as highlighted in the Red Cross pamphlet. She notes the action taken in the UK to end the use of prison blood collected here and stop gay men from donating due to the risk of AIDS.

HOWEVER, one aspect was overlooked that the pharmas and CDC, FDA and other bodies had not fully considered regarding US prisons that seriously compromised safety and no doubt led to the continued infection of haemophiliacs AFTER a ban on gays donating. The ban did not take into account specific prison culture and therefore had limited effectiveness with regard to improving safety.

Grayson’s own professional work as a Senior Nurse Therapist in the 1980s included teaching prison and probation officers regarding AIDS prevention and she visited prisons to educate on safety and safe sexual practise. The regional unit where Grayson worked provided assessment of prisoners, court reports and support for those leaving the penal system.

As Grayson learnt from her own experience of visiting prisons, although some inmates openly admitted to being homosexual, other male prisoners would also have unprotected sex with other men, including known drug users, even rape them but they would never in a million years self-identify as being “gay”.

The so called “straight” guys in US prisons would resort to furtive sex in the showers or behind locked cell doors, seeing other men merely as a temporary fix, out of necessity, a convenient orifice in which to plant their penis or accommodate another man’s erection in the absence of a female partner. They were never going to self exclude from selling their plasma because that would label these macho guys as “queer” and also selling their blood for a few dollars secured the odd luxury item. So as long as prison plasma collection continued and the UK allowed factor concentrates made from US prison plasma to be imported, the risk of AIDS from men who had sex with men continued.

As Grayson understood having a qualification in Health Education… the language used in safe sex campaigns must be be straightforward language and terminology (explicit if required) which could be understood by the target audience. Although the Red Cross looked at gay donor behaviour, there were no warnings in prison leaflets for men who didn’t identify as gay but still participated in sex with men, no warnings for those who may be bisexual. It wasn’t just about excluding gay men but excluding ALL men who had sex with other men because of the HIV and hepatitis risk. There was also no consideration of the high level of male rape in US prisons which could spread deadly viruses.

In addition, even when heat treatment was introduced with factor concentrates, UK haemophiliacs were told to use up un heat- treated products including those manufactured with plasma from US prisons which could have a shelf life of up to 2 years before they would be given heat-treated products. So those haemophiliacs with factor concentrates in their home fridges could have injected themselves beyond 1985 leading to infection or reinfection with HIV and hepatitis C.

This article in the Washington Post (September 21st, 1980) highlights Arkansas State Penitentiary including torture and past sexual offences within Arkansas State Penitentiary in the late 1960s,

In the barracks, “convicts known as ‘creepers’ would slip from their beds to crawl along the floor, stalking sleeping enemies. In one 18-month period,” Stevens wrote, “there were 17 stabbings, all but one occurring in the barracks.

“homosexual rape was so common and uncontrolled that some potential victims dared not sleep; instead they would leave their beds and spend the night clinging to the bars nearest the guards’ station.”

https://www.washingtonpost.com/archive/politics/1980/09/21/arkansas-lets-the-light-into-brubakers-dark-ages-prison/b59ac713-dd24-4bdf-a511-5e90195b35d1/

Again Parker pointed out in Salon that,

the plasma program wasn’t the only source of scandal within the Arkansas prison system. In 1985 inmates began complaining loudly about prison medical care and rights abuses, including rape. That year Arkansas prisons had the highest number of inmate complaints of any state in the country. State Rep. Bobby Glover, a Democrat, became a champion for prisoners with stories of abuse. His office collected a raft of allegations, ranging from rape and other forms of abuse to bid rigging, theft of state property and the use of state property for private work and gambling.

Angola State Penitentiary was no different to Arkansas, the prison also collected plasma from prisoners for factor concentrates as highlighted in an Irish documentary made by journalist Paul Cunningham of RTE and as the Free Library highlighted, the prison magazine also documented rapes as mentioned below,

Another important positive event in the 1970s was the reorganization of The Angolite, the inmate published magazine of the penitentiary. Originally written and published by an all-white staff, its importance grew dramatically when Wilbert Rideau and Billy Wayne Sinclair became editors in the late 1970s. (258) Under their leadership the magazine became “a must read for corrections officials and prisoners’ rights groups across the world,” in the words of the New York Times. (259) The Angolite published exposes on prison rape, murders, executions, and the conditions inside the prison. In 1978, they won the American Bar Association Silver Gavel Award and the Robert F. Kennedy Journalism Award. (260) In 1979, Rideau and Sinclair received the George Polk Award in Journalism for Special Interest Reporting. (261) This publication, more than any other, exposed what life was like inside the penitentiary.

https://www.thefreelibrary.com/LOUISIANA+ANGOLA+PENITENTIARY%3A+PAST+TIME+TO+CLOSE.-a0568839707

The document, Plasmapheresis Centers in Correctional Institutions, An Information Booklet (November 1984) which Grayson acquired recognizes that, “using prison blood is controversial within the plasma industry itself” but makes no specific mention of how prisons would deal with the issue of men who have sex with men (that may not identify as “gay”) the high levels of rape in prison and how that would be dealt with in terms of both plasma donor safety and safety of the plasma recipient.

It is extremely difficult to prohibit or monitor high-risk sexual activity in prison and no guarantee a prisoner will make a complaint if raped and self exclude from selling his plasma. What he buys with his blood for money fee might be the only small pleasure he gets and some prisoners were allegedly paid in drugs. Even with a physical examination to determine health it would be unlikely to include an anal examination and if an anal examination was included it might only indicate recent sexual activity not that of the past, prisoners might also lie to conceal rape.

One prisoner Bryson Martel (who also used the name Kendal Spruce) did testify to the National Prison Rape Elimination Commission, he was raped by 27 inmates in an Arkansas prison after being sentenced in 1991, this began a year before the Arkansas prison plasma programme ended and within 2 weeks of being detained,

Rewire News Group provided an update on Bryson in 2010 as follows,

Bryson, convicted of check fraud, was repeatedly raped and beaten in an Arkansas prison. As a result of those attacks, he walked out of prison with a death sentence — not handed down by a judge or jury, but by the corrections staff who failed to keep him safe; Bryson contracted HIV because of the rapes.

Last June, he died of AIDS-related illness. “I know I had to pay the price for what I did, but I’ve paid double the price,” said Bryson before his death. “That check I wrote cost me my life.”

It wasn’t until September 4th, 2003 that President George W Bush signed into law the Prison Rape Elimination Act (PREA). As Florida Department of Corrections stated,

It was created to eliminate sexual abuse in confinement facilities including adult prisons and jails, lockups, community confinement facilities and juvenile facilities.  PREA includes forty-three (43) standards that define three clear goals, to prevent, detect and respond to sexual abuse.

As this 1st March, 2014 Independent article highlights even today little has changed regarding sex and rape in US prisons,

Sex in men’s prisons: ‘The US system cultivates rape. If you treat people like animals, they behave like it’

Human Rights Watch estimated in 2010 that 140,000 US inmates have been raped. Shaun Attwood has written three books on life inside and his latest, Prison Time, details the sex – consensual or otherwise – the prostitution, the pimping and the equal, loving relationships behind bars

https://www.independent.co.uk/news/world/americas/sex-in-men-s-prisons-the-us-system-cultivates-rape-if-you-treat-people-like-animals-they-behave-like-it-9155241.html

So we should thanks Hazel Blears for adamantly highlighting the UK government’s “line to take! regarding compensation and inadvertently reminding this author of the Canadian comparisons and the flawed US pharma company plasma screening and collection which continued to compromise the safety of UK haemophiliacs just as happened in Canada. The Red Cross had leaflets for deterring donors outside of prisons but Blears made no mention of plasma collection within prisons that was used to make factor concentrates and exported to the UK. Even if there had been leaflets designed to warn against the viral risks of men having sex with men distributed in prisons…it is highly unlikely the rapes would have stopped. The words which fit here for allowing such dangerous products to be given to UK haemophiliacs including children are NEGLIGENCE and LIABILITY. It was not only US authorities than continued to allow Arkansas prison blood to be collected until 1992 but UK authorities were responsible for allowing imported factor concentrates to continue to be used on UK haemophiliacs long after Dr Spence Galbraith called for US blood products to be taken off the shelves as a matter of urgency due to the risk of AIDS in May 1983!

There were gross double standards by the British government as they stopped the use of prison blood here, banned gay men from donating reducing the viral risk but continued to allow those receiving US factor concentrates to be exposed to US prison blood where men continued to have sex with men and raped and were subject to brutal rape sometimes by multiple males thus increasing the risk of infection with AIDS and hepatitis viruses. Doctors also failed to withdraw old un heat treated products extending the period of possible exposure and infection. There is a certain irony that US prisoners were able to take legal cases for rape and infection with HIV, and the states failure to protect inmates from harm yet it was so much more difficult for haemophiliacs that received their infected blood.

During the early 2000s, Grayson and Longstaff made contact with US lawyers with the help of Canadian and US campaigners which led to their participation in the “dumped” treatment 2nd generation litigation where UK cases were included providing they could supply the relevant batch numbers which could then be traced to source. Longstaff was identified as having the blood of many prisoners including at least one inmate recorded as being HIV positive. The venue for the cases deemed however that the US courts were “forum non conveniens” (not the right place for the cases to be heard) with the UK authorities viewed as the first line of defence regarding “duty of care” for haemophiliacs. The case concluded with a token settlement agreement with 4 US plasma companies highlighting that UK haemophiliacs and their families could have their cases heard in British courts.

Way back in April 1966, Dr J Garrott Allen highlighted in California Medicine,

The risk of serum hepatitis from transfusions derived from prison and Skid Row populations is at least 10 times that from the use of volunteer donors. For every 100 patients receiving a single transfusion, the attack rate is 0.3 per cent when the donor is of the family or volunteer type and 3.2 per cent when the donor is from a prison or Skid Row population.

The most practical methods of reducing the hazard of serum hepatitis from blood are to limit the use of blood by giving one transfusion instead of two, two instead of three, etc., and especially by excluding, if possible, all prison and Skid Row donors.

It is urged that state and federal control of the quality of blood used for blood transfusions be studied with the possibility that measures may be taken to increase its safety. If it is necessary that blood from prison and Skid Row donors be used to meet the demands, such blood should be labeled as carrying a significantly increased hazard of transmitting serum hepatitis in order that the physician prescribing blood may take the necessary precautions.

Garrott Allen was quick to realize that putting factor concentrates onto the market made from pooled plasma without first finding a way to virally inactivate hepatitis was a recipe for disaster for the haemophilia community.

The British government cannot claim not to have been informed regarding the dangers of US prison blood. Dr J Garrot Allen wrote to Sir William Maycock on the 6th January 1975 warning of the increased risk of hepatitis in paid and prison donors which appears to have fallen on deaf ears.

To return to the so called “treatment” taken by Longstaff, a letter from documentary maker Kelly Duda to Stephen Grime QC who acted for Longstaff in his Judicial Review, High Court case where he fought for the right to be given recombinant synthetic treatment as opposed to human plasma, highlighted that in one batch alone he had received the plasma of “297 inmates from Arkansas and an undetermined number of convicts from Avon Park, Florida.” When Longstaff was on prophylaxis, he would take factor concentrates 3 times a week with additional treatment if he bled. Investigative journalist, Mara Leveritt wrote in her Arkansas Times (August 7th, 2007) article with Grayson which highlighted Longstaff tracing back treatment batch numbers to Arkansas prison, that,

In 1992, the year after the plasma program closed, Peter Longstaff tested positive for Hepatitis C. In March of that same year, as Clinton was running for president, his former chief of staff, Betsey Wright, sent a memo titled “prison positives.” That memo, a copy of which is in Roberts’ files, mentioned four points, including, “education into prison by bc.” But the first point Wright listed was: “Run cheapest system in country.”

In 1994, Longstaff and Grayson began their campaign to expose how tainted blood had been able to make its way into their country.

On 26th July 2002, Grayson submitted the following questions under Freedom of Information to the Department of Health and Social Care (with name and address supplied) as follows:

1) Under Freedom of Information what information, leaflets, safety advice, was given to UK haemophiliacs in the 1970s and 80s that received US factor concentrates manufactured from pooled prison plasma warning them of the high risks of taking these products?

2) When importing factor concentrates manufactured from US prison plasma what consideration was given to the high level of men who have unprotected sex with men in prison (who may not necessarily self identify as “gay”) and the high number of male rapes in prisons which may not necessarily be reported but could affect plasma safety if they donated?

3) What consideration was given to the potentially high risk of AIDS in US prisons when the government decided not to take Dr Spence Galbraith’s advice to withdraw US treatment from UK shelves in May 1983 and again given the high number of men who have sex with men often unprotected and the documentation of the high number of male rapes in US prisons which could affect plasma safety, bearing in mind also that some of these rapes would go unreported?

Longstanding campaigners often hear about the “moral” arguement for compensation in the Infected Blood Inquiry hearings. However the government’s “line to take” uttered time after time by ministers and civil servants, that there was no wrongdoing, no negligence and no liability regarding the infection of haemophiliacs would be comedic if the consequences weren’t so dire and with so much damning evidence presented, is frankly indefensible.

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: Did Sir Robert Francis just lie on oath re hepatitis B submissions?

Colette Wintle haemophilia campaigner who lost her nursing career as a result of hepatitis B infection outside Westminster with her husband who is also active in the campaign for justice and proper compensation
(Image, Colette Wintle.)

When the privately funded Archer Inquiry concluded with a final report in 2009, Lord Archer of Sandwell recognized the importance of haemophiliacs being compensated for ALL viruses. The Inquiry was set up to investigate how thousands of haemophiliacs with an inherited blood clotting disorder became infected with multiple deadly viruses during the 1970s and 80s through their factor concentrate treatment.

Therefore, it was with some concern that this author Carol Grayson and her campaign colleague Colette Wintle noted what appeared to be largely an exclusion of hepatitis B regarding compensation from the recent report of Sir Robert Francis QC, titled, Compensation and redress for the victims of infected blood: recommendations for a framework (7th June, 2022). This can be read in full on the following UK government website,

https://www.gov.uk/government/publications/compensation-and-redress-for-the-victims-of-infected-blood-recommendations-for-a-framework

Francis was asked questions on hepatitis B by Jenni Richards QC for the Infected Blood Inquiry which began in 2018 under the Chair of Sir Brian Langstaff and indicated that he had not received representations on hepatitis B from campaigners and their supporters.

This was certainly not the case from Grayson and Wintle who referred to hepatitis B in their written submission of issues to be included when looking at compensation. This was also discussed in a phone conference call between Sir Robert Francis and the two long standing activists on contaminated blood. They wrote the following within their document,

Quote,

Compensation for each infection and to partners/carers looking after those infected

Haemophiliacs and some of their partners and children were infected with deadly viruses and all were affected which caused immense physical harm and psychological damage.

Haemophiliacs were infected with multiple viruses, HIV and hepatitis B and C and as Lord Archer stated in his 2009 report must be compensated for each and every virus. We point out that hepatitis B infection can be a serious condition and had attention been paid to finding a way to virally inactivate hepatitis B BEFORE factor concentrates were put on to the market (even if that meant a delay) it would have also have had the effect of later eliminating hepatitis C and HIV, avoiding further infection.

We point out that when AIDS emerged there was no effective treatment so haemophiliacs had to live with the knowledge that they were being given a 5 year life expectancy and for many that turned out to be correct. Those who survived AIDS were suffering ever deteriorating health with little hope of leading a normal life. 99% of haemophiliacs with HIV were also co-infected with hepatitis C, and many had also had hepatitis B. Those who escaped HIV infection and had hepatitis C were often co-infected with hepatitis B.

In the early years, treatment given to treat HIV and hepatitis could also come with severe health risks and intolerance to treatment with regimes such as AZT and Interferon. It is only in more recent years that treatment has improved but the damage is already massive if not deadly for most.

As stated previously, co-infection makes treatment of a haemophiliac much more difficult. One example is that drugs taken for life to control the HIV virus may impact on the liver of a person with hepatitis C. Another example is that for years a person with hepatitis C was automatically denied any chance of a liver transplant due to having to take immune-suppressant drugs after transplantation. Many haemophiliacs died without hope of a transplant.

In addition, government and some doctors playing down the serious nature of infections which meant that there were often delays of years in referring haemophiliacs over to an infectious diseases ward and a specialist liver unit. Haemophiliacs had the stress of fighting for referrals that often came too late. In addition, there are different strains of HIV and different genotypes of hepatitis C some known to be much more virulent than others and this can cause further health and treatment related problems. The majority of haemophiliacs weren’t only infected once (which was bad enough) but for being reinfected almost every time they took treatment until heat -treatment was introduced so the impact on the immune system, liver and body in general is enormous.

When haemophiliacs inadvertently infected a family member if they had not been told they were positive, they then had to live with the impact on that person and the guilt.

Partners who cared for haemophiliacs had to take on a dual role of being both parents to children, father and mother as the infected person deteriorated. They took over many responsibilities that would have been shared with a healthy partner. They had to give up their own careers and aspirations and often cared for years 24/7 without support. This has led to many now suffering chronic physical health issues after their loved one died and relying on disability benefits.

Please read cases of both infected and affected submitted to the Inquiry for many different examples of the impact of living and dying with HIV and hepatitis viruses.

In an email to the Infected Blood Inquiry, Grayson wrote, “I wish to say emphatically that hepatitis B, reinfection, and exposure to v CJD featured in our presentation to Sir Robert Francis regarding compensation ( but if you recall he did not report the content of our meeting in his initial statement.)”

There had previously been an issue however of Sir Robert Francis not recording some of the meetings with campaigners and the themes discussed which was highlighted in an earlier blog (see below)

In addition to our submission including hepatitis B, articles specifically on hepatitis B were sent to David Kirkham at the Cabinet Office, for the attention of Sir Robert Francis. Francis was also sent a legal judgement on hepatitis B related to EIBBS with an article I wrote for my own blog regarding the importance of assessing haemophiliacs separately from whole blood for hepatitis B due to their infection with multiple viruses and including the issue of reinfection, coinfection and the impact of how multiple viruses interact with each other, the cumulative effect as below,

Grayson and Longstaff received an email reply from Kirkham stating, “thank you for passing this on.  I have forwarded to Sir Robert, along with a copy of the full JR judgement, for his information.”

Articles sent by the pair included one called, Is there a cure for hepatitis B? (Medical News) where Grayson highlighted, HBV is fatal for thousands of people every year because of resulting liver damage. However, most people recover from HBV infection within a few months. (but these are people without co infection and without repeated reinfection in the way haemophiliacs were reinfected with factor concentrates).

Another point Grayson highlighted was the following,

Acute HBV can develop into chronic HBV. A person’s risk of developing chronic HBV is relative to the age at which they first developed the infection.

Newborns and young children with HBV have a higher risk of developing a chronic infection. According to the Centers for Disease Control and Prevention (CDC)

Then an article was submitted on the case of a man jailed for infecting a partner with hepatitis B . Grayson was interested to know where that might leave those that gave haemophiliacs factor concentrates as a so called “miracle treatment” KNOWING that there was an almost 100% infection risk from the first shot of factor concentrates. (US plasma pools could be as high as 400,000 donors). Warnings given in the 1960s in the US by hepatitis experts such as Dr J Garrott Allen regarding the dangers of factor concentrates were ignored by authorities in the UK who turned a blind eye to outbreaks amongst haemophiliacs in the US once factor concentrates were introduced there prior to licensing in the UK in 1973.

Part of the evidence from Grayson and Wintle was related to the topping up of plasma pools for factor concentrates with “hepatitis rich” plasma sourced from gay men in San Francisco targeted for research into hepatitis B. However the surplus was then added to the plasma pools as highlighted in US depositions. Hepatitis B was an early indicator of AIDS prior to a test being developed.

Wintle who received US factor concentrates during the 1970s and 80s and was sat watching Sir Robert Francis continue his evidence to the Inquiry for a second day stated,

The impact of hepatitis B on my life as a female haemophiliac was utterly devastating. Not only did I have to battle with my local GP for care when it became clear I was ill but my ultimate diagnosis fell to the keen observation of a colleague, a senior surgical registrar at work, who realized that I was severely jaundiced and clearly ill with hepatitis. I ultimately lost my nursing career and was forced out of work for 2 years. In addition, my sister who is herself a haemophiliac was in recovery from then non A non B hepatitis (infected via the same haematologist) was forced to take on my care because I had no other family members who could take care of me. I had no professional support whatsoever throughout that time. The damaging effect on my liver was aggravated by the fact that I had already been exposed to infected US products from America 10 years previously which meant I was dealing with a co infected diagnosis… A DOUBLE WHAMMY!

So in conclusion it is difficult to understand how Sir Robert Francis could claim he received no representations regarding compensation for hepatitis B. If he didn’t receive representations then why not? If he did receive representation, then why is this not mentioned?… If his memory is so poor that he has forgotten that he was sent representation on hepatitis B, then it doesn’t bode well for the rest of his work on contaminated blood compensation proposals. What other omissions might there be that could have been overlooked?

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: Was important French evidence re v CJD transmission missing from expert evidence at the Infected Blood Inquiry?

Émilie Jaumain in 2010, the year she was exposed to prions during a lab accident. She died in 2019 at age 33.
(Image ARMEL HOUEL via Science)

Earlier this year, experts on variant Creutzfeldt-Jakob Disease (v CJD) gave evidence at the Infected Blood Inquiry in relation to haemophiliacs with an inherited bleeding disorder who were exposed to the prion disease through administration of UK factor concentrate treatment, injected into their veins to prevent and stop bleeding episodes. Haemophiliacs were infected with HIV and hepatitis viruses in the 1970 and 80s which is the main focus of this inquiry however v CJD is also being investigated.

The Inquiry heard from Professor John Collinge, Professor of Neurology and Head of the Department of Neurodegenerative Disease at the UCL Institute of Neurology who is also director of the UK Medical Research Council’s Prion Unit. In addition, Professor James Ironside, Emeritus Professor at the Centre for Clinical Brain Sciences at the University of Edinburgh who was made Commander of the British Empire (CBE) for Services to Medicine and Healthcare in 2006 also testified.

 Back in May 2009, the Independent reported,

More than 800 people with haemophilia have received contaminated blood products putting them at heightened risk of developing vCJD, the Government has disclosed for the first time.

The figures were revealed in a parliamentary answer from Lord Darzi, a Health minister, following the death of a haemophiliac who had received infected blood products. A post-mortem examination on the man, who was in his seventies when he died last November, revealed traces of variant Creutzfeldt-Jakob disease (vCJD) in his spleen, although his death was due to an unrelated cause.

The development has increased the likelihood that haemophiliacs who received infected blood could develop the brain disease, Chris James, chief executive of the Haemophilia Society, said yesterday. The CJD Incidents Panel is to consider the implications of the finding at its meeting today.

“It now looks like there is a real possibility of a link between receiving blood products and developing vCJD. What was a theoretical risk is now a suspected causal link. That has raised the threat for other haemophiliacs who may have dismissed it,” Mr James said.

The complete article can be read on the following link:-

https://www.independent.co.uk/life-style/health-and-families/health-news/800-haemophiliacs-given-tainted-blood-at-risk-of-vcjd-1687768.html

On the 3rd August 2021, The European Centre for Prevention and Control published its Risk Assessment, titled, The risk of variant Creutzfeld disease transmitted via blood and plasma- derived medicinal products manufactured from donations obtained in the United Kingdom which can be read here:

However, this author spotted an article in Science just days earlier titled, France issues moratorium on prion research after fatal brain disease strikes two lab workers (28th July 2021) which does not appear to have been considered in the publication. References to France in the European Centre report from page 8 onwards are focused specifically on blood donors and recipients as this example demonstrates,

In France, three patients that developed signs of vCJD in 2004 and 2005 were blood donors. A total of
42 recipients of blood components donated by these donors were identified, with 17 recipients still alive in 2006
[125]. The most recent vCJD case with blood donation history was reported in Italy in 2016 (Figure 3).

What chilled this author was an introduction in Science regarding lab accidents where workers were exposed to CJD as follows,

PARIS—Five public research institutions in France have imposed a 3-month moratorium on the study of prions—a class of misfolding, infectious proteins that cause fatal brain diseases—after a retired lab worker who handled prions in the past was diagnosed with Creutzfeldt-Jakob disease (CJD), the most common prion disease in humans. An investigation is underway to find out whether the patient, who worked at a lab run by the National Research Institute for Agriculture, Food and Environment (INRAE), contracted the disease on the job.

If so, it would be the second such case in France in the past few years. In June 2019, an INRAE lab worker named Émilie Jaumain died at age 33, 10 years after pricking her thumb during an experiment with prion-infected mice. Her family is now suing INRAE for manslaughter and endangering life; her illness had already led to tightened safety measures at French prion labs.

What is disturbing is that lab worker Émilie Jaumain appears to have been infected during her daily activities and the implications for haemophiliacs. This further significant passage is likely to worry haemophiliacs,

In Jaumain’s case, there is little doubt she was infected on the job, according to a paper published in The New England Journal of Medicine (NEJM) in 2020. She had variant CJD (vCJD), a form typically caused by eating beef contaminated with bovine spongiform encephalopathy (BSE), or mad cow disease. But Europe’s BSE outbreak ended after 2000 and vCJD virtually disappeared; the chance that someone of Jaumain’s age in France would contract food-borne vCJD is “negligible or non-existent,” according to the paper.

It is noted that the skin was broken and drew blood. Two further passage state,

For Jaumain, who worked at INRAE’s Molecular Virology and Immunology Unit in Jouy-en-Josas, outside Paris, that long period of uncertainty began on 31 May 2010, when she stabbed her left thumb with a curved forceps while cleaning a cryostat—a machine that can cut tissues at very low temperatures—that she used to slice brain sections from transgenic mice infected with a sheep-adapted form of BSE. She pierced two layers of latex gloves and drew blood. “Émilie started worrying about the accident as soon as it had happened, and mentioned it to every doctor she saw,” says her widower, Armel Houel.

In November 2017, Jaumain developed a burning pain in her right shoulder and neck that worsened and spread to the right half of her body over the following 6 months, according to the NEJM paper. In January 2019, she became depressed and anxious, suffering memory impairment and hallucinations. “It was a descent into hell,” Houel says. She was diagnosed with “probable vCJD” in mid-March of that year and died 3 months later. A postmortem confirmed the diagnosis.

So to sum up, a lab worker had an accident at work and had direct exposure between infected material and a cut which drew blood. Haemophiliacs had the blood of multiple blood donors infected with the prion disease v CJD injected directly into their veins. Surely these 2 lab worker cases must raise concerns regarding infected material/blood entering the body and directly causing prion infection?

Here is the remainder of the article which surely has implications for haemophiliacs especially as the incubation period is much longer than was first realized and could be decades before infection becomes apparent. Why weren’t these French cases mentioned in the European report? Also in addition an Italian lab worker died of v CJD in 2016 as highlighted below.

INRAE only recently admitted the likely link between Jaumain’s illness and the accident. “We recognize, without ambiguity, the hypothesis of a correlation between Emilie Jaumain-Houel’s accident … and her infection with vCJD,” INRAE chair and CEO Philippe Mauguin wrote in a 24 June letter to an association created by friends and colleagues to publicize Jaumain’s case and lobby for improvements in lab safety. (Science has obtained a copy of the letter, which has not been made public.)

Jaumain’s family has filed both criminal charges and an administrative suit against INRAE, alleging a range of problems at Jaumain’s lab. She had not been trained in handling dangerous prions or responding to accidents and did not wear both metal mesh and surgical gloves, as she was supposed to, says Julien Bensimhon, the family’s lawyer. The thumb should have been soaked in a bleach solution immediately, which did not happen, Bensimhon adds.

Independent reports by a company specializing in occupational safety and by government inspectors have found no safety violations at the lab; one of them said there was a “strong culture” of risk management. (Bensimhon calls the reports “biased.”)

The government inspectors’ report concluded that Jaumain’s accident was not unique, however. There had been at least 17 accidents among the 100 or so scientists and technicians in France working with prions in the previous decade, five of whom stabbed or cut themselves with contaminated syringes or blades. Another technician at the same lab had a fingerprick accident with prions in 2005, but has not developed vCJD symptoms so far, Bensimhon says. “It is shocking that no precautionary measures were taken then to ensure such an accident never happened again,” he says.

In Italy, too, the last person to die of vCJD, in 2016, was a lab worker with exposure to prion-infected brain tissue, according to last year’s NEJM paper, although an investigation did not find evidence of a lab accident. That patient and the lab they worked at have not been identified.

After Jaumain’s diagnosis, “We contacted all the research prion labs in France to suggest they check their safety procedures and remind staff about the importance of respecting them,” says Stéphane Haïk, a neuroscientist at the Paris Brain Institute at Pitié-Salpêtrière Hospital who helped diagnose Jaumain and is the corresponding author on the paper. Many labs tightened procedures, according to the government inspectors’ report, for instance by introducing plastic scissors and scalpels, which are disposable and less sharp, and bite and cut-resistant gloves. A team of experts from the five research agencies is due to submit proposals for a guide to good practice in prion research to the French government at the end of this year.

The scientific community has long recognized that handling prions is dangerous and an occupational risk for neuropathologists, says neuropathologist Adriano Aguzzi of the University of Zurich. Aguzzi declined to comment on the French CJD cases, but told Science his lab never handles human or bovine prions for research purposes, only for diagnostics. “We conduct research only on mouse-adapted sheep prions, which have never been shown to be infectious to humans,” Aguzzi says. In a 2011 paper, his team reported that prions can spread through aerosols, at least in mice, which “may warrant re-thinking on prion biosafety guidelines in research and diagnostic laboratories,” they wrote. Aguzzi says he was “totally shocked” by the finding and introduced safety measures to prevent aerosol spread at his own lab, but the paper drew little attention elsewhere.

The moratorium will “obviously” cause delays in research, but given the very long incubation periods in prion diseases, the impact of a 3-month hiatus will be limited, Comoy says. His research team at CEA also works on other neurodegenerative diseases, including Alzheimer’s disease and Parkinson’s disease, and will shift some of its efforts to those.

Although Jaumain’s diagnosis upset many in the field, it hasn’t led to an exodus among researchers in France, Haïk says: “I know of only one person who resigned because they were so worried.”

https://www.science.org/content/article/france-issues-moratorium-prion-research-after-fatal-brain-disease-strikes-two-lab

Robert Herriman, a microbiologist who hosts Outbreak News can be viewed discussing the Émilie Jaumain case on the video link below,

The recent report on compensation for those who received Contaminated Blood, Compensation and redress for the victims of infected blood: recommendations for a framework published on the 7th June 2022 suggests that no compensation will be paid for exposure to v CJD and that anyone that develops symptoms will then have to access the government CJD fund. As yet however there is no test available for haemophiliacs who must live with the daily fear that they might develop the prion disease at any time. The recent lab infection cases suggest CJD might be more of a risk than haemophiliacs are currently being told… and lets face it, they have been there before with the playing down of hepatitis risks!

This is also of great concern to the partners and carers who looked after haemophiliacs and may also have been exposed to their blood. For years, government and local health authorities failed to provide safety guidelines for those in the community despite strict safety guidelines being applied in hospitals to protect staff in the work environment. Prions are much harder to kill than the HIV or hepatitis viruses and conflicting advice was given on what to do with bloody laundry if at all as this author discovered and highlighted in an earlier blog.

Once again this flags up haemophiliacs as a unique patient group due to the multiple viral infections they were given through their treatment including HIV and hepatitis viruses and exposure to prions, the fact that haemophiliacs were re infected through the use of large plasma pools (up to 400,000 donors with US plasma pools) and the infection of multiple family members that had haemophilia plus partners and children were sometimes infected also. This is a very different scenario to that of other individual patients without an inherited bleeding disorder.

Government must now recognize the psychological distress ALREADY caused to haemophiliacs with v CJD exposure on which this author has written earlier and pay compensation for over 2 decades of unresolved fear that exposure to v CJD may at some point lead to incubation and having to deal with the many symptoms of an horrific prion disease. Yes if they develop the disease they can apply to the CJD Trust and government must address now the additional stress that haemophiliacs are NOW living with, without relief and no test yet to change that position.

There is one case of a payment being made for psychological harm in the case of a doctor with a needle stick injury and fear of HIV exposure. However in her case she received compensation for stress despite the fact that in her case, there was a test for HIV, she was found not to be infected and could gain relief and return to work, even if not the same work. The case can be read here,

£465,000 Compensation Payout For A Syringe Needle-Stick Injury / Infection? – Case Study

https://www.accidentclaims.co.uk/compensation-amounts/465000-compensation-payout-for-a-syringe-needle-stick-injury-infection

So where does that leave current blood safety with regards to vCJD. Government have recently revised guidelines re v CJD and blood. Can we be certain though that the experts have factored in all the relevant data and safety information or is our blood supply again at risk?

Here is the latest update from government,

Research and analysis

Creutzfeldt-Jakob disease (CJD) update (data to end of December 2021)

Updated 21 June 2022

https://www.gov.uk/government/publications/creutzfeldt-jakob-disease-cjd-surveillance-biannual-updates/creutzfeldt-jakob-disease-cjd-update-data-to-end-of-december-2021

It is important to continue to ask questions regarding blood safety, experience has warned us government made many mistakes on blood safety in the past and we can not assume lessons have always been learnt in the present or for the future.

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: Open letter to CEO of the Haemophilia Society regarding the 2010 quashing of the government “inadvertent” infection narrative

Haemophiliac Peter Longstaff just before his death due to alleged negligence after receiving contaminated factor concentrate treatment from the highest risk sources
(Image, Newcastle Journal, “Bad Blood” campaign)

Dear Kate (Burt)

Yesterday Baroness Virginia Bottomley gave evidence to the Infected Blood Inquiry as Minister of State (1989-1992) and Secretary of State for Health (1992-1995). The Haemophilia Society Public Inquiry Team Account on Twitter tweeted,

Baroness Bottomley said in her ‘humble view’ there was no negligence involved in the contaminated blood scandal. She said: ‘If treatment is given in good faith according to the best scientific advice at the time, then it is not negligent.’

As a long standing haemophilia campaigner with whom the APPG for Haemophilia and Contaminated Blood refuses to engage and has indeed been blocked by Dame Diana Johnson MP, I am appalled that Sir Peter Bottomley (current Father of the House) was ever allowed to sit on the APPG, given the role of his wife regarding the haemophilia litigation of 1991, defending the government’s “no negligence” stance. It is a total “conflict of interest”. I have gone back through Bottomley’s Twitter account in recent months and find it most odd that although he tweets on other key issues, such as Windrush and Ukraine, there is nothing on Contaminated Blood especially given we are now in the midst of the Infected Blood Inquiry set up under the Chair of Sir Brian Langstaff?

I wish to notify the Haemophilia Society officially that following a meeting fellow campaigner, Colette Wintle and I had with Anne Milton (Health) at Westminster in 2010 the word “inadvertent” infection was removed from use regarding the infection of haemophiliacs with HIV and hepatitis C in the 1970s and 80s as totally inappropriate. Inadvertent means, “done, or happening unintentionally” according to the Cambridge dictionary. This was minuted and Anne agreed the minutes were accurate and that we could use them. What happened to haemophiliacs was no accident, rather a series of disastrous decisions and errors and is allegedly due to the “negligence of public bodies.” As Andy Burnham (Former Secretary of State for Health) highlighted, this is also “a criminal cover-up on an industrial scale.”

It is untenable that Sir Peter Bottomley remains on the APPG when his wife is maintaining her stance of “no negligence” DESPITE the removal of the word “inadvertent” infection, 12 years ago. The Inquiry has been shown document after document detailing serious safety violations regarding factor concentrates from the 1991 HIV litigation, multiple other sources and including US legal depositions. Indeed Colette and my late husband Pete were part of the “dumped” treatment cases. My husband received factor concentrates manufactured from the plasma of Arkansas donors AFTER the plasma centre was closed down on the grounds of safety and this treatment was NEVER withdrawn in the UK. Pete’s batch numbers were traced back to source and an HIV infected donor was identified through US lawyers. This was just one of many gross safety violations.

If the APPG was truly sincere in fighting for justice for the haemophilia community, it would have engaged and worked jointly with those haemophilia campaigners fighting for over 3 decades that hold key evidence not just those that either hold little evidence themselves or are intent on rehashing my earlier research evidence as new, creating false timelines of discovery and distracting away from truth and justice.

In the past, the (then) Haemophilia Society made some gross errors which will have no doubt contributed to the death of its members. The most obvious being the fight to keep US plasma on the shelves in the UK at a time when Dr Spence Galbraith (Public Health Laboratory Service) was pleading with government officials that this must be immediately withdrawn due to the risk of AIDS. As someone he trusted and with whom he shared his documents, phone calls and was invited to visit him at his home, I can say that this haunted him until the day he died.

As you know I make a distinction between the Haemophilia Society today that is working hard to support its membership and campaigners and the Society of old.

The Haemophilia Society Public Inquiry Team account also tweeted, yesterday,

Baroness Bottomley said: ‘We could not accept liability if treatment is given according to the science at the time and in good faith, as tragic as it is.’

Let me address this issue once again. Baroness Bottomley appears unaware that in the 1960s, the pharmaceutical companies were WARNED of the dangers of pooled plasma which had already been known for decades. They were WARNED by experts including Dr J Garrott Allen that to put factor concentrates on the market without first finding a way to eliminate hepatitis viruses would be catastrophic for haemophiliacs. It was done the wrong way round!

First you invest in the technology, (and if you haven’t yet developed it, you must delay your product) as safety comes before profit. Then when you are satisfied you have the technology to remove deadly viruses you put your product on the market. We were not talking of a product such as cryoprecipitate made from a handful of volunteer donors here but a product manufactured from US plasma pools that were to reach as high as 400,000 paid “high-risk” donors. These included skid-row donors, drunks and drug addicts in Central America where they were over-bled so much, the donors themselves collapsed from weakness and ill health., their bodies depleted of vital nutrients.

Then there were the prison donors with a whole catalogue of safety violations such as falsifying names of prisoners known to have hepatitis using names from an Arkansas telephone directory so they could sell their infected blood.

In addition, there was the targeting of gay men coming out of the bath houses in San Francisco’s Tenderloin district for their “hepatitis rich” plasma for research into hepatitis B, then using the surplus to top up the factor concentrate plasma pools. Hepatitis B was used as a market for AIDS in gay men before testing became available. Just 3 of many examples.

Lets consider another historical example outside of haemophilia and factor concentrates… Supposing a company wanted to put a plane onto the market for commercial journeys in the early days of aviation and they said, we want passengers to fly with us but we don’t yet have the technology to keep a plane up in the air for the entirety of your journey….and there is a 99% chance the plane will drop out of the sky and the majority of those flying will be severely injured or die on route.  It would be viewed as absolute madness and criminal to attempt such a journey with commercial passengers.

Yet this is what happened with haemophiliacs and pooled plasma in the form of commercial factor concentrates. Haemophiliacs were experimented on in unethical trials, not told of the huge risk of viral infection or where plasma was being sourced. Quite the opposite, my late husband’s parents were informed in writing in 1973 by the treating haematologist Dr Peter Jones, that the new factor concentrate treatment “could do nothing but good for the boys and for other patients.”

The arguement that haemophiliacs would have died without factor concentrates does not stand. Once cryoprecipitate was introduced, life expectancy for haemophiliacs was not far off from the average life expectancy of a person without haemophilia in the general population. It may not have been the most convenient of treatment but it did work for most.

My husband Pete and brother in law Stephen were killed as a result of the viruses contained in factor concentrates highlighted on their death certificates. Haemophiliacs were given a product made from pooled plasma that hepatitis experts had warned the pharmaceutical companies in the 1960s was guaranteed to infect them, with an almost 100% hepatitis infection rate, let alone the likelihood of new and unknown viruses emerging. What was done to haemophiliacs was dangerous and allegedly criminal and that is why there are so many dead and still dying as a result of their treatment!

We cannot have MPs and others sitting on the APPG that still think the infection of haemophiliacs was “inadvertent” infection…it is monstrous! This is an opportunity for the Haemophilia Society to help make amends for past mistakes. The APPG must make a public statement that all their members acknowledge and support this change of narrative from 2010 or I ask that the Haemophilia Society pull their secretariat from the APPG. We cannot go back over and must move forward.

I challenge the Society also to find one public reference to my multi awarded research on Contaminated Blood by the APPG… surely if they truly support the rights of haemophiliacs, they would wish to engage with those that hold the actual evidence of safety violations and abuses against haemophiliacs… or is this group engaged in yet another “damage limitation” exercise maintaining the lies of successive governments over decades?

We must not forget the late Lord Morris of Manchester (First Minister for Disabled) and past President of the Haemophilia Society who worked tirelessly WITH campaigners, shoulder to shoulder, side by side for years, in fact the result of that is documented in past copies of Hansard as he would ring Colette and I to help brief him on updates before any debate. When he died, the APPG was taken over by those who seem determined to obliterate the work of the long standing campaigners that kept the Contaminated Blood campaign going for decades. It is the most bizarre of circumstances!

I look forward to your prompt response and thank-you for your ongoing support to those infected and affected as a result of the Contaminated Blood scandal.

With thanks

Kind Regards

Carol Grayson (Haemophilia Action UK

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: Why the word “compensation” is a battle ground for haemophiliacs and an admission of liability by government

Jeremy Hunt apologizes for using the word “compensation” in his letter to my MP Nick Brown dated 15th Dec 2016

For haemophilia campaigners that were active on contaminated blood in the 1990s, they will not have forgotten why the word “compensation” is so important and has itself become a verbal battle ground with government.

Haemophiliacs were infected with HIV and hepatitis viruses in the 1970s and 80s when unscrupulous plasma companies and governments introduced the use of pooled plasma factor concentrates KNOWN to be “high-risk” for hepatitis without first finding a way to virally inactivate… a recipe for disaster as predicted by Dr J Garrott Allen in the 1960s. There was a significant increase in hepatitis risk from paid donors in the US compared to UK volunteer donors.

At the conclusion of the 1991 HIV litigation, the government made lump sums payments to haemophiliacs with an inherited bleeding disorder and infected with HIV and named this financial support, “ex-gratia payments”. Further “ex-gratia” payments were made in 2004 through the Skipton Fund for hepatitis C infection. These payments now come under the English Infected Blood Support Scheme (EIBSS) and its equivalent in other parts of the UK.

If MPs or new campaigners ever wrote to government accidently referring to these ex -gratia payments as compensation, they would be politely reprimanded in writing that the government would never use this word as to use it would be to admit liability.

This author once received an apology from Jeremy Hunt (former Secretary of State for Health) after he used the word compensation to refer to ex-gratia payments and I asked if government was now accepting liability.

Here is the definition of the word compensation according to the Oxford Dictionary means…

“something, typically money, awarded to someone in recognition of loss, suffering, or injury” …

https://en.oxforddictionaries.com/definition/compensation

So it is with some satisfaction that Sir Robert Francis report recently released regarding contaminated blood victims is titled,

Independent report

Compensation and redress for the victims of infected blood: recommendations for a framework

A study by Sir Robert Francis QC that looks at options for a framework for compensation for the victims of the infected blood tragedy.  

https://www.gov.uk/government/publications/compensation-and-redress-for-the-victims-of-infected-blood-recommendations-for-a-framework

As the government has been so adamant in its stance for the past 3 decades, it seems that the sudden inclusion of the word “compensation” can only be an admittance towards the state’s liability for the infection of haemophiliacs… and rightly so.

I rather suspect however that a comment made on the word compensation today by former Prime Minister, Sir John Major at the Infected Blood Inquiry suggests he seems rather less keen to use this word where haemophiliacs are concerned. Too late, John… we are not letting go of the word “compensation” this time! So thank-you to government for using the word in the recent Francis study and in so doing finally accepting liability… government can’t have it all ways!

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: North East media led the way on haemophilia campaigning with the Longstaff/Grayson family

Longstaff family home targeted with painted slogans after their son Stephen a haemophiliac dies from AIDS
(Northern Echo 1987)

The North-East of England has a long tradition of activism on human rights, truth and justice from the Jarrow March in 1936 against unemployment and poverty to the ongoing Show Racism the Red Card, the UK’s leading anti racist charity set up in 1996 and continuing today. It is no surprise therefore that the region has also been at the forefront of health campaigning and for several decades, one area has had prolific press coverage led jointly by local media and haemophiliacs and their families and that is is campaigning on the contaminated blood scandal.

During the 1970s and 80s haemophiliacs born with an inherited bleeding disorder were infected with HIV and hepatitis viruses through their factor concentrate treatment, much of it imported from the US and manufactured using the plasma of virally “high risk” donors such as prisoners, prostitutes and gay men.

With the passage of time as media has changed and moved increasingly from hardcopy print to online websites, old press campaigns have become less easy to access unless an effort has been made to scan early hardcopies and give them a known digital presence. So the purpose of this article is to educate new campaigners as to the background of North -East haemophilia campaigning focusing on the fight to overcome the stigma and discrimination that emerged with AIDS as the first haemophiliacs became infected in the UK in 1983 to the battle for a public inquiry and compensation. It is a basic overview so interested persons can access these articles should they wish to explore further.

The media featured are the Northern Echo, Hartlepool Mail and Newcastle Journal and its sister paper the Chronicle. Local North-East TV interviews and radio media archives are not included as they have still to be transferred from old videos and cassettes to new media. National and international contaminated blood media campaigns instigated by Grayson or involving the author and her late husband Peter are not included in this article.

Although numerous UK media outlets had reported sporadically from 1983 on the impact of AIDS on British haemophiliacs focusing on individual cases, (often under conditions of anonymity) it wasn’t until around 1986 that a comprehensive and sustained campaign began at the Northern Echo with haemophiliacs at the centre and some families going on the public record by name. The Longstaffs, (who would later become this author, Carol Grayson’s family through marriage) were among the first with Arnold Longstaff speaking about the terrible tragedy he and his wife Alice were experiencing having learnt that both their haemophiliac sons, Peter the eldest and Stephen 9 years younger had both tested positive for the AIDS virus.

The Northern Echo launched its “Fight for Justice” campaign in 1986 focusing on Haemophilia/AIDS/Contaminated Blood and interviewing infected and affected families alongside the Haemophilia Society, local MPs and haematologists from the Royal Victoria Infirmary, Newcastle. At the same time, the Hartlepool Mail also ran stories being the home town of the Longstaffs. The Newcastle Journal and Chronicle had run some individual stories of a local family where 3 family members, a haemophiliac, his wife and child died of AIDS but did not embark on a fully fledged and prolific “Bad Blood” campaign until 2000. This was begun by journalist Louella Houldcroft working jointly with Carol Grayson and her husband Peter Longstaff.

Wikipedia describes the Northern Echo as follows:-

The Northern Echo is a regional daily morning newspaper based in the town of Darlington in North East England, serving mainly southern County Durham and northern Yorkshire. The paper covers national as well as regional news. In 2007, its then-editor claimed that it was one of the most famous provincial newspapers in the United Kingdom.[2] Its first edition was published on 1 January 1870.

Peter Baron wrote many of the stories. He began as a reporter on the Northern Echo in 1984 before becoming an editor on the Hartlepool Mail for a year. He later returned to the Echo in 1999 where he became its longest standing editor. He has an MBE for “service to journalism and North- East life.”

Northern Echo Haemophilia/Contaminated Blood Campaign

When the first UK haemophiliacs became infected with the AIDS virus in 1983, it soon became clear that this was a deadly disease and life expectancy at that time was put at around 5 years with some haemophiliacs already sick and dying. There was a terrible fear of what was then an unknown entity, and out of that grew an atmosphere of prejudice and discrimination in local communities towards those infected and affected. Families were having to cope with a disease for which there was no known cure, a virus which could only be treated symptomatically and often little could be done to ease the suffering of victims. Haemophiliacs and their relatives also found themselves plunged into financial difficulties as infected patients were too ill to work and affected families had to give up their jobs and careers to take on a 24/7 caring role.

One of the first mentions of the Northern Echo campaign nationally came in 1987 during a debate at Westminster where Tony Newton (Minister for Health) gave a statement on haemophiliacs and much needed financial assistance which came following an intense year of campaigning by the paper. To put this in context, the following will show Newton’s introduction to the plight of haemophiliacs and follow with references to the much praised press campaign.

Haemophiliacs (Financial Assistance)

Volume 122: debated on Monday 16 November 1987

The Minister for Health

(Mr. Tony Newton)

With permission, Mr. Speaker, I wish to make a statement about haemophiliacs who have become infected with the AIDS virus as a result of treatment with infected blood products. I should explain that I am doing so in the unavoidable absence of my right hon. Friend the Secretary of State, who is unwell.

As the House knows, the position under successive Governments has been that, while compensation may be sought through the courts if there is a question of negligence, there is no state scheme of “no fault” compensation for those damaged by medical treatment.

The Haemophilia Society has, however, put to us a powerful case that the position of haemophiliacs is wholly exceptional and should be treated as such. Their employment prospects and insurance status were already affected by the haemophilia itself. The treatment that led to their infection was designed to help them to live as near a normal life as possible. The hereditary nature of haemophilia can, and in some cases does, mean that more than one member of the same family may be affected.

The Government, having considered all the circumstances, have concluded that it would be right to recognise the unique position of haemophiliacs infected with this virus. We therefore propose to make an ex-gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. It will be able to make payments to the affected individuals and families throughout the United Kingdom, and to do so with greater flexibility than could readily be achieved in any other way.

The House will wish to know that we have put this proposal to the society, which has welcomed it warmly. The society has asked for advice and assistance in administering the fund, which we have gladly agreed to arrange.

The grant of £10 million is being made from the reserve. When the full details of the grant and trust fund have been settled there will be an exchange of letters with the society. I will arrange for copies to be put in the Library.

I know that the whole House wishes to express its sympathy to the individuals and families who have been affected in this tragic way. I hope that the whole House will welcome this action to translate that sympathy into practical help.

End

Later in the debate the following appears with regard to the Northern Echo

Mr. Tim Devlin

(Stockton, South)

Is my hon. Friend aware that this measure will be warmly welcomed in the north of England, especially by the many bodies which have campaigned on this issue, led by the Northern Echo? Will he assure the House that the money is coming from the Treasury, not from the DHSS funds? Will it go to the widows and orphans of those who have already died from this lamentable condition?

Mr. Newton

I am conscious of the feeling about this in northern England, not least because, somewhat unexpectedly, about six or seven months ago I was interviewed on the subject by the Northern Echo. It will be open to the trust to make available money to the widows and other dependants of those who, unhappily, have died from this infection.

https://hansard.parliament.uk/commons/1987-11-16/debates/e96e201d-ee0a-47ce-aa82-22d0cad834a0/Haemophiliacs(FinancialAssistance)

As well as highlighting the difficulties of managing what was now known as HIV whilst existing on benefits, the Northern Echo ran stories detailing the types of stigma experienced and discrimination that was occurring from families refusing to allow their children to attend the same schools as haemophiliacs and fears over using the same swimming pools to the Longstaffs having anti-AIDS slogans daubed on the house in paint and a fear of using the communal chalice in church. There were also hard hitting media articles giving some background history to the scandal of infection, Owen’s commitment to becoming self sufficient in blood and blood products, details on the dangerous sourcing of plasma and the repeated safety violations. Then then were the harrowing stories of the deaths of haemophiliacs and the impact on loved ones that were a regular and disturbing feature of the media campaign which included the need for an investigation into what went wrong.

This author has a hardcopy collection of some of these articles and the following list of headlines from old clippings (see below) is intended to show the range of stories covered between 1986 and 1987. The clippings are old and fragile with dates somewhat faded or missing but are easy to date by the year if not the precise month by other stories and details in the papers. They are taken from an old Longstaff family box of stories snipped from the local media and were never intended for a formal memorial project. It is hoped, better copies can be obtained for a proposed project on the history of haemophilia contaminated blood campaigning so that these important archives can be preserved properly for future generations in order that they have an accurate history from those who lived through it as opposed to only a retrospective analysis of old documents gathered through Freedom of Information, years after the event. This is just a sample.

Northern Echo, AIDS the fight for justice, Archived Hardcopies

Year 1987

Blood killed tragic pair: Slogan attack on family (Northern Echo, January 14th 1987, Hardcopy Archived)

Liberals back cash campaign, haemophiliacs AIDS (Northern Echo, March 2nd 1987, Hardcopy Archived)

Factor VII: The lifesaver that turned into a killer (Northern Echo, November 5th 1987, Hardcopy Archived)

Pain of father who watched his son die (Northern Echo, November 7th, 1987, Hardcopy Archived)

Blood killed tragic pair (Stephen)

MP quizzes minister

Slogan attack on family, (Stephen) Caring team shoulders the AIDs burdon

Mother to start group

The figures that miss out cases

School issues plans for contraception

Disaster victim (Stephen)

Virus that turns minds to suicide

Carriers feel strain

Cash help pledge

MP urges AIDs cash

Family pleas refused

Vital help missing warns doc

Compensate the victims warns nurses

Apathy rocks first benefit concert

Vital blood hit by delay

Cash help pledge

Cash blow for haemophiliacs… Compensation would open Pandora’s box

Secret catastrophe… victims terrified of being identified

Staff get new guide

Campaign goes to Westminster

Bid to help tragic victims

Health chief’s case promise

Cause for the Lords

Demand for money grows

Maggie raise victory hopes

Meacher backs campaign

Help group faces bankruptcy, AIDS advice cash plea

Dad who kept son away “Experts can’t convince me”

Advice over the phone

Safe but not fool proof say medics

Scandal of the blood salesmen

Suing the government for a ruined life

MPs support AIDS victims

A victory for compassion

MPs flock to support campaign

MPs agree to step up pressure

Help on way for victims

Lords hear fight for justice: North-east death toll rises again

Runcie rules on sex fears

Branson condom campaign

Church’s woeful response to AIDs

Tragic costs for suffering families

People who must not give blood

Know the facts

Victims that cannot help their plight

Infected blood has given AIDS to haemophiliacs: Man who waits as the clock strikes fear

Victims life of pain and fear

Secrecy of virus table

Campaign begins to win cash for AIDS victims: Calamity is now your problem

The price we have to pay “Families are torn apart

Campaign wins support and starts debate: Now the Echo begins the public cry for justice

Plea for donors

Snubbed by schoolmates: Ordeal of Peter and his parents

Breakthrough in search for drug: Expert returns with new hope

Clubbing together to help save body

In brief

Fowler to attend meeting

Courage to fight for justice

Suitcase morals

AIDS: Spread shows no sign of slowing

Victims families face cash drain

Australians study echo report

In my view: Bright sparks in gloom

Baby safe from AIDS

AIDS appeal dashed

Chief probes PCs death

No insurance threat means no mortgage

Government bows to campaigners

Echo steps up campaign

Nothing yet for victims

Grief for AIDS PC

MPs lend support to campaign

Student session

Milk could carry virus

Look again plea

Students fight for rights

Support for AIDS cash battle

AIDS test case may open floodgates

Killer blood kills boy, 10

Sympathy but no compensation: Minister reaffirms policy on victims

Battling Jack joins the fight

Blood facts roll in

Blow in bid for AIDS debate

Two to join virus study

Liberals back echo call

Rape starts AIDs fear

Expert named

Negligence claim denied

Leaflet allay workers’ fears

On a poignant note, its important to recognize how campaigning in those early days when even some MPs wanted those infected with HIV to be isolated on a desert island, took its tool. Arnold Longstaff already suffering from ill health as a retired minor, and devastated following the death of Stephen from AIDS in 1986 and with his elder son Peter showing signs and symptoms of the AIDS virus, collapsed and died from a massive heart attack aged just 58. His GP expressed his belief that the day to day strain of fighting for justice and to expose the contaminated blood scandal had taken yet another life.

Grayson who married Peter Longstaff began her campaigning with the Northern Echo around 2001 which continues to the present day collaborating with journalist Gavan Havery. Historical articles not online feature also on a media compilation formulated by this author for the Infected Blood Inquiry. This is currently 135 pages long and has yet to record media articles published since the Infected Blood Inquiry started in 2018 but will be updated soon and presented to the Inquiry. The Inquiry was set up to investigate the circumstances surrounding the infection of haemophiliacs through factor concentrate, pooled plasma products (and in addition the separate case of those non haemophiliacs infected through whole blood transfusions). It is chaired by Sir Brian Langstaff.

The following are just 3 examples of more recent Northern Echo articles:-

Newcastle widow says blood scandal inquiry should include police investigation (Northern Echo, 11th July, 2017)

https://www.thenorthernecho.co.uk/news/15403464.newcastle-widow-says-blood-scandal-inquiry-include-police-investigation/

and

Widow claims contaminated blood warnings were missed (Northern Echo, 14th March, 2018)

https://www.thenorthernecho.co.uk/news/16085290.widow-claims-contaminated-blood-warnings-missed/

and

Supplying contaminated blood “is murder”, inquiry told (Northern Echo, 26th September, 2018)

https://www.thenorthernecho.co.uk/news/16904969.supplying-contaminated-blood-is-murder-inquiry-told/

The Hartlepool Mail

The Hartlepool Mail covers the town of Hartlepool on the North-East coast and surrounding local areas and have also supported Grayson and Longstaff (both born in the town) in their campaign for justice and continues to report on the Infected Blood Inquiry. Here are just 3 examples of their media coverage over the years which continues to the present day.

Families fury over missing organ scandal (Hartlepool Mail, July 10th 2001, Hardcopy Archived)

http://www.hartlepoolmail.co.uk/news/family-s-fury-over-missing-organ-scandal-1-990259/amp

HIV infected blood victim loses his battle for life (Hartlepool Mail, April 19th 2005)

http://www.hartlepoolmail.co.uk/news/hiv-infected-blood-victim-loses-his-battle-for-life-1-981911

Probe into deaths of patients exposed to HIV (Hartlepool Mail, March 28th, 2007)

http://www.hartlepoolmail.co.uk/news/probe-into-deaths-of-patients-exposed-to-hiv-1-1018392

The Newcastle Journal “Bad Blood” campaign with sister paper the Chronicle began in the year 2000 more by accident than design. This author saw a letter in the Newcastle Journal by local virologist, Dr Harash Narang on variant CJD and responded in writing concerned about the risk to haemophiliacs of what was a deadly prion disease. The letter was picked up by journalist Louella Houldcroft which led to a meeting with Grayson and Longstaff and an agreement to run a joint campaign in the hope of obtaining a public inquiry, proper compensation for haemophiliacs and holding those responsible to account.

To give some background of campaigning in the 1990s…

Once the HIV haemophilia litigation concluded in 1991, there appeared to be little appetite for further media campaigning. Those with HIV were waiting to die. Haemophiliacs had signed the infamous waiver not to take further legal action for “hepatitis viruses” (no specific mention of hepatitis C on the actual Undertaking) and most had no idea that 99% of those with HIV also had hepatitis C and that it too could be deadly. If the blood of haemophiliacs had been tested, it was unknown to them and often done in secret presumably using blood taken to measure clotting factor levels without pre and post test counselling or informed consent for an HCV test. Those secretly tested for hepatitis C as in the case of Longstaff were not told they were positive sometimes for years. If they were told anything by their treating doctors, HIV lawyers and the national Haemophilia Society it was that non- A non- B (as hepatitis C was more widely known back then) was just like having a mild dose of the flu and “nothing to worry about.”

Another group of haemophiliacs were only just starting to become aware that there may be an issue with hepatitis C in the late 1980s/early 1990s. These were haemophiliacs without HIV but with hepatitis C who were beginning to show symptoms of liver disease and related problems. Haemophiliacs with HIV were not looking for hepatitis C symptoms so assumed all the health problems they were suffering were HIV related.

This author’s late husband was the first to realize the implications of the waiver in the HIV litigation in the Spring of 1994 after being told in the presence of Grayson that he was hepatitis C positive which prompted a call for his medical records only to find a positive test result recorded in 1992 and which he had never been told. This was the starting point for the couple to return to Peter’s old lawyers and launch both a public awareness campaign on hepatitis C and a legal challenge to the waiver. Unfortunately at this time most national media would not engage with the contaminated blood scandal as they were also not so aware of the serious nature of hepatitis C and considered infection of haemophiliacs “a dead story” as they had already covered HIV. This was amplified due to the denials of the then Haemophilia Society that hepatitis C was of little concern and not a matter that needed addressing.

In frustration, Grayson and Longstaff set up Haemophilia North in 1994 which later became Haemophilia Action UK to reflect the national remit as more and more haemophiliacs began contacting them through word of mouth. They were isolated, often alone and needing support. The majority of haemophiliacs at that time were hidden away, afraid to put their head above the parapet, only a handful were public and prepared to face the stigma and discrimination head on to change the public’s perception of HIV and hepatitis C. In the same year Peter Mossman (who had hepatitis C, co founded the Manor House Group with Peter Hughes and in addition, Colette Wintle set out as an independent campaigner, all were to become the best of friends. It then took a year of constant pressure to persuade the Haemophilia Society to launch their own campaign which happened very reluctantly in 1995. So to summarise, in 1994, the only haemophilia campaign groups existing at that time were Birchgrove that campaigned specifically on HIV but were later to include hepatitis C, Haemophilia Action UK, Manor House Group and Colette as an independent. This did not change until 2006 when Tainted Blood appeared on the scene and other groups began to follow.

Newcastle Journal Campaign

The Journal “Bad Blood” campaign which began in 2000 was characterised by front page eye catching headlines meant to grab attention. This was true investigative journalism and stories would feature on the front page, often with a 2 page spread inside and then in addition, the opinion page. Grayson and Longstaff went from total obscurity to being stopped on the street with messages of support as they gave up their anonymity and began to tackle prejudice and discrimination giving haemophiliacs a voice. Grayson did the background research and searched out key documents including files from the HIV litigation and evidence from the US whilst Louella interviewed important figures suggested by the couple and planned out and wrote the stories with some guidance on the direction on which to focus. All realized it was a complicated story to tell so they would need to backtrack and give some basic history of the events leading up to contamination in order to engage the reader.

One of the early stories was to interview Lord David Owen to get some background on the arguement for self -sufficiency, Owens thoughts on this and why his commitment had not been carried through. It was some years since he had engaged on this issue having become somewhat disillusioned over the failure to properly address his concerns over missing records and little effort from the Parliamentary Ombudsman to investigate.

Shortly after the launch of the Bad Blood campaign Grayson and Longstaff began working with Scottish media, similar stories would go out a day or so later but using stories of local Scottish campaigners that were prepared go on record regarding their personal experience of living with deadly viruses but didn’t have the wider campaign evidence to help validate that this was no accident but a scandal. Once a campaigner has worked on a story its very unlikely that will forget this experience as its an important step by step process achieved through meticulous planning that remains clearly in the mind. The Owen story once published in the Journal was picked up and delivered in Scotland and then by the nationals making it into the Guardian. This breathed life in the Journal campaign.

Haemophilia Action UK campaign goals were simple, a Public Inquiry, Recombinant for all, to legally overturn the hepatitis waiver in order to take a case for hepatitis C with the aim of seeking, “compensation on a parity with Eire” which Grayson and Longstaff had initiated in 1996. They also wanted to write and record a true history of the contamination of haemophiliacs with HIV, hepatitis viruses and as the years progressed including exposure to v CJD.

Over the years many of the key stories were first broken in Newcastle and the phone rang day and night as campaigners around the UK, that were starting to speak out, referred journalists to Grayson and Longstaff for a comment and details of evidence held. Some of the early emails between campaigners are still held by the couple. The years between 2000 to 2004 were particularly busy with story after story published as the Journal wanted “new angles” on the scandal which were provided week after week. Stories included the waiver, testing without permission, withholding positive test results, experimentation, missing medical records, Arkansas and Louisiana prison blood evidence, stories on the US pharmaceutical companies, gay donors, revisiting the 1975 World in Action documentary, the 1975 Dr J Garrott Allen letter, the 1982 Rizza and Bloom “cheaper than chimps” letter on using PUPS to test out infectivity of treatment, the Dr Spence Galbraith 1983 letter to remove US treatment on the shelves in the UK for fear of AIDS, the Glasgow Symposium on hepatitis viruses, Craske studies on haemophiliacs and many other stories.

Articles were often delayed as key documents were run past anxious Journal lawyers with stories alleging government negligence and serious safety violations. The Journal covered haemophiliacs’ lack of faith in the then Haemophilia Society calling them out re “conflict of interest” along with certain doctors who received payments from pharmaceutical companies. Articles featured the Judicial Review for Recombinant, filing complaints to the GMC, complaints submitted to the police at Dyfed Powys, to the Office of Supervision of Solicitors over conduct issues, gaining access to HIV litigation documents at various stages, petitioning the European parliament, fighting for the right for previously excluded HIV positive haemophiliacs to be considered for a liver transplant, calls to investigate missing records, retained organs, the legal case the couple assisted in Scotland where a payment was made direct from a pharma company and exposure to v CJD to name but a few.

The paper followed meetings with ministers, parliamentary debates, Early Day Motions and the lies told over the Eire settlement, with ministers falsely claiming Ireland had paid out on liability. Successes were also duly reported, the phasing in of Recombinant (at first deemed too expensive), increased payments to Macfarlane Trust beneficiaries including payments to bereaved partners, and the extension of grants, the announcement of the Skipton Fund (worked on by the couples barrister, once government realized the waiver would not stand. In addition to this, during the early 2000s, Grayson and Longstaff persuaded US lawyers to take on their case and on the back of Peter’s legal aid add around 300 other haemophiliacs that could prove treatment batch numbers and fit certain requirements to begin their attempt to take a case in the US.

During this time, the work of Grayson and Longstaff with the Journal did not go unnoticed by civil servants at the Blood Policy Unit replying to letters and accusations on behalf of ministers. One internal document dated 22nd March 2002, covered Grayson in some detail, here are some excerpts as follows:-

Grayson is the partner of a co-infected haemophiliac (he has HIV, hep B and C). She is very articulate and speaks very forcefully. She maintains that the government imported plasma “from the slums of Africa and skid-row America” which was then used to treat haemophiliacs and hence infect then with HIV and hepatitis C. In the past she has produced a letters from the sister of an alleged USA prisoner who she claims was a plasma donor despite having hepatitis B and C.

Ms Grayson is convinced there is a conspiracy to hide information about the importation of blood products in the 1970s. She has been in contact with Lord Owen who was Minister for Health at that time and who made attempts to make the UK “self sufficient” in blood products so that imports from the US could cease. The local newspaper in Newcastle “The Journal” has covered her story in depth and continues to publish articles.

She is also campaigning for a full public inquiry, compensation for haemophiliacs infected with hepatitis C and provision of Recombinant clotting factors for all haemophiliacs (Not just for new patients and those aged up to 16 as currently agreed.

At the end of the document the following is highlighted, under the title,

Documents referred to in Ms Grayson’s letter.

We have concerns that Ms Grayson has evidently obtained Government documents from the 1970s/80s and is basing some of her arguements on information gleaned from these papers. Officials have looked at some files from this period to establish how the money allocated by Lord Owen was spent, and papers on this issue have been passed to the Haemophilia Society. However given pressure on time and resources, we have not looked in detail at the decisions made during that period an exercise requiring several weeks of work. We have therefore not responded to the sum of the detailed questions in Ms Grayson’s letter which are partly based on those documents. We recognize that this is not a sustainable position and will provide further advice on handling shortly.

We recommend that PS (PH) decline this request for a meeting but provide a response on the main issues raised in Ms Grayson’s letter.

Grayson’s group Haemophilia Action UK was described as “a very active, Newcastle based campaign group.”

In 2003, it was noted under the heading, Some factual points gleaned: that,

“A public enquiry is a stated aim of the English Haem Soc. but has not been a priority for the cross party parliamentary group up til now. However Lord Morris is apparently becoming more aligned with the Newcastle group (Carol Grayson.)

The word inquiry was spelt incorrectly as enquiry. The comment however was in fact correct as Lord Morris of Manchester, First Minister for Disabled and President of the Haemophilia Society would ring Grayson and fellow campaigner Colette Wintle before every Westminster debate and much of the content of the debates in Hansard for years reflect their research, actions and thinking.

In one 2004 internal government exchange an off the cuff comment by Grayson led to her being viewed as a potential threat to government after she jokingly asked what did she have to do to be taken seriously, did she have to scale Big Ben as Cat Woman. She has been described by government officials as “aggressive” and “badgering” with one Government communication stating,

“You will note her veiled threat to dress up as catwoman and scale Big Ben. Such threats are not to be taken lightly. Two of her fellow campaigners in Scotland threw cans of red paint at the walls of the new Scottish parliament building on the day it opened as part of their push for a public enquiry.”

In response to Haemophilia Action UK’s relentless campaign and a dossier of documents sent jointly with the Journal, government agreed to write a report which became known as the “Self-Sufficiency Report.” In his 10th May, 2022 statement to the Infected Blood Inquiry, Richard Gutowski wrote of his time in office at the Blood Policy Unit from 2003 to 2004 referring to this report,

 “Continuing to handle the varied infected blood issues, including the report published as ‘Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991 (the self sufficiency report and enquiries from the press and campaign groups. The strength of feeling and effectiveness of those campaigning on the infected blood issues meant that at one time I was told my team received the highest volume of correspondence in Whitehall. At another time, I held the unenviable record for the longest outstanding Private Office Correspondence; this reflected the lack of team resources to which I have already referred. One aspect of the infected blood issues was Lord Owen’s concerns regarding papers from his time in office.”

Grayson later critiqued this report for her Masters dissertation at Sunderland University for which she received a distinction and was awarded the Economic and Social Research Council (ERSC) Michael Young Prize plus the Committee of Ten Thousand (COTT) Action = Life Award presented at an AIDS conference in Washington DC. Evidence from her dissertation was formed the basis of a 2007 BBC Newsnight report which was nominated for a Royal Television Society (RTS) award for best Newsnight of that year. The Self Sufficiency Report was later withdrawn as a “whitewash” as detailed by the BBC.

Contaminated Blood report “full of lies” (BBC, 19th Dec, 2017)

https://www.bbc.co.uk/news/health-42410301

The Journal continued to report on “Bad Blood” throughout the privately funded Archer Inquiry set up in 2007 by Lord Archer of Sandwell. Although the report was welcomed and echoed Grayson’s recommendations, compensation on a parity with Eire was blocked due to the lies told by government that Eire had paid out due to legal liability. In fact a Judicial Review won by Andrew March supported by Grayson’s research from 2004 highlighted that Eire paid out on the grounds of “extraordinary suffering” for “loss and need” at court levels but out of court with no legal liability established. The British government however still refused to compensate and continued the lies for years to come. The Journal continues to report in the present day on the Infected Blood Inquiry through journalist Sam Volpe and like the Northern Echo received an award for its investigative journalism and dedicated campaigning. The following is a collection of Journal media Grayson has compiled. It is possible some reports may be missing as the old website was replaced and earlier links disappeared with the passage of time.

Newcastle Journal and Chronicle “Bad Blood” Articles From 2000 Onwards

Year 2000 Media

Bad Blood Scandal…(Lack of funding blamed for crisis: Doctors “forced to use US supplies” (Newcastle Journal,? August, 2000, Hardcopy Archived)

Blood Scandal: Victim who claims he was infected with lethal virus from transfusion wins the right to sue government (Newcastle Journal, August 5th 2000, Hardcopy Archived)

This dying man fights a great betrayal..A few survivors gain hope from legal victory (Pete was anonymous as “John”) (Newcastle Journal, August 5th, 2000, Hardcopy Archived)

Bad Blood… How the scandal developed and Haemophilia factfile (Newcastle Journal, August 5th, 2000, Hardcopy Archived)

Bad Blood, Explanation needed (Newcastle Journal, Letters and Opinion, August 5th, 2000, Hardcopy Archived)

Prisoner was turned into killer-by-proxy… Linda Miller, Bud Tant story, Arkansas (Newcastle Journal, August 7th, 2000, Hardcopy Archived)

Blood Controversy..  Experts refute claims over US plasma … Self-Sufficiency (Newcastle Journal, August 8th, 2000, Hardcopy Archived)

Transfusion gave me HIV and hepatitis C, (Newcastle Journal, August 9th 2000)

http://www.rense.com/general3/hv.htm

Boy died in blood scandal, 11 year old killed by AIDS virus (Newcastle Journal, August 14th, 2000, Hardcopy Archived)

100 patients go to court (whole blood cases plus hep c waiver, Paul Saxon)… Bad Blood Scandal (Newcastle Journal, August 19th, 2000, Hardcopy Archived)

Legal aid victory for HIV haemophiliac campaigners (? Chronicle, Journal or Northern Echo, August 2000, Hardcopy Archived)

Infected blood “was brought from Africa’… Expert discovered unethical trafficking (Newcastle Journal, August 28th, 2000, Hardcopy Archived)

Patients put at risk in protest -Two haemophiliacs demand alternative (treatment) Newcastle Journal, October 6th, 2000, Hardcopy Archived)

Father’s SOS to North for sick son… Reddie case (Newcastle Journal, October 24th, 2000, Hardcopy Archived)

Transfusion gave me HIV and hepatitis C… New Zealand man infected on holiday (Newcastle Journal, 2000, Hardcopy Archived)

Haemophiliacs misled, claims lawyer (Newcastle Journal, November 3rd , 2000, Hardcopy Archived)

The death of a Cummins Inmate from untreated hepatitis and beatings…Linda Miller story…( Newcastle Journal, December 5th, 2000, Hardcopy)

Lack of funding blamed for crisis… Doctors “forced to use US supplies” (Newcastle Journal, December 2000, Hardcopy Archived

Year 2001

Blood Money: Haemophiliacs infected through bad blood transfusions receive compensation in Ireland, while the UK government refuses to hold an inquiry (Newcastle Journal, January 24th, 2001, Hardcopy Archived)

A public inquiry is right and just (Newcastle Journal, Voice of the north Opinion, January 24th 2001, Hardcopy Archived)

Blood victims spell out case for inquiry (Newcastle Journal, January 24th 2001, Hardcopy Archived)

Health Secretary (Milburn) once backed compensation (Newcastle Journal, February 20th, 2001, Hardcopy Archived)

HIV, hepatitis- and now you may have CJD (Newcastle Journal, March 19th, 2001, Hardcopy Archived)

Crusading lawyer backs public inquiry on blood (Newcastle Journal, April 2nd, 2001, Hardcopy Archived)

Victims cry out for blood justice now… Public Inquiry call on infected plasma (Newcastle Journal, April 4th 2001)

Owen’s outrage at failure over blood (Newcastle Journal, August 2nd 2001, Hardcopy Archived)

Our battle goes on, say casualties of bad blood (Newcastle Journal, August 2nd, 2001, Hardcopy Archived)

Probe call at blood charity: Haemophiliacs’ anger over Society’s links to drug firms (Newcastle Journal, August 24th, 2001, Hardcopy Archived)

Haemophilia Society faces revolt from Sufferers: Record which shames a nation (Newcastle Journal, August 24th, 2001, Hardcopy Archived)

Questions must be resolved (Newcastle Journal, August 24th, 2001)

Pressure rising over bad blood (Labour peer tells Blair Inquiry into scandal is crucial (Newcastle Journal, August 31st, 2001, Hardcopy Archived)

Labour peer calls for blood inquiry (Newcastle Journal, September 7th, 2001, Hardcopy Archived)

Tainted Blood: Why an Inquiry is a must (Newcastle Journal, Opinion, September 3rd, 2001, Archived)

“Worst ever NHS tragedy” (Newcastle Journal, December 5th, 2001, Hardcopy Archived)

Year 2002

Haemophiliacs hit out at own society… Anger over support for paid blood (Newcastle Journal, January 7th 2002, Hardcopy Archived)

Inquiry plea to minister Yvette Cooper (Newcastle Journal May 15th, 2002, Hardcopy Archived)

http://209.157.64.201/focus/f-news/698393/posts

Agonising wait for treatment (Newcastle Journal via Focus, August 5th, 2002)

http://209.157.64.201/focus/f-news/711343/posts

Plan for using US blood sparks new fear (Newcastle Journal via Free Republic, August 8th, 2002)

http://www.freerepublic.com/focus/news/735665/posts 

Criminal probe into bad blood considered
(Newcastle Journal via Free Republic, Aug 14th, 2002, Hardcopy Archived)

http://www.freerepublic.com/focus/f-news/735630/posts

A market in blood (Newcastle Journal, Opinion, August 17th, 2002, Hardcopy Archived)

Plan for using US blood sparks new fear (Newcastle Journal, August 17th, 2002, Hardcopy Archived)

Former health minister calls for Inquiry, (Newcastle Journal, August 20th, 2002, Hardcopy Archived)

Owen demands inquiry into infected blood scandal (Guardian via Focus, August 19th 2002, Hardcopy Archived)

https://www.theguardian.com/society/2002/aug/19/NHS.medicineandhealth

Virus “can spread by blood transfusions” West Nile (Newcastle Journal, August 20th, 2002, Hardcopy Archived)

When blood and money circulate (Newcastle Journal, December 20th 2002, Archived)

Peril of paid donors (Newcastle Journal, Voice of the North, December 20th, 2002, Hardcopy Archived)

Year 2003

Silence over secret killer… Patients kept in the dark over disease. Calls for a Public Inquiry intensify after new revelations over haemophiliacs plus Opinion, A breakdown of trust (Newcastle Journal, January 20th, 2003, Hardcopy Archived)

Whitehall launches probe in blood row (Newcastle Journal, January 24th 2003, Archived)

CJD doc jets off  (Newcastle Journal, March 9th, 2003, Hardcopy Archived)

Lawyer allegedly posted cannabis (Journal via Google Groups, March 18th 2003)

https://groups.google.com/forum/#!msg/uk.rec.drugs.cannabis/ouN8V1tyoy0/Ke77r1JC-eIJ

GMC U-turn in blood tests row (Newcastle Journal, April 14th 2003, Archived)

Fight goes to court (Newcastle Journal, May 30th, 2003, Hardcopy Archived)

Court review agreed: Judge grants legal aid over blood products (Newcastle Journal, July 18th, 2003, Hardcopy Archived)

Inquiry into HIV blood cash trail (Newcastle Journal, July 28th, 2003, Hardcopy Archived)

Police called in bad blood battle (Newcastle Journal, October 18th, 2003, Hardcopy Archived)

Delay in bad blood decision. (Newcastle Journal, 22nd November 2003)

Bad blood patient loses case: Treatment claim fails (Newcastle Journal, December 9th 2003, Hardcopy Archived)

Blood Victims CJD nightmare (Journal, via Questia, December 18th 2003)

https://www.questia.com/read/1G1-111373862/blood-victim-s-cjd-nightmare

Year 2004

Row over “insult” to blood victims… (comparison with Eire) (Newcastle Journal, March 1st 2004, Hardcopy Archived)

 Year 2005

Blood victims “are ignored”: Anger at awareness drive (Newcastle Journal, March 19th 2005, Hardcopy archived)

Peter’s fighting on beyond his death (Newcastle Journal via Free Library April 19th 2005, Hardcopy)

https://www.thefreelibrary.com/Peter’s+fighting+on+beyond+his+death.-a0131671472

Brave to his dying day: Campaigning haemophiliac loses fight for life, (Newcastle Journal, April 2005, Hardcopy Archived)

Blood fight man loses his brave battle for life (Newcastle Journal, April 20th, 2005, Hardcopy Archived)

Friends’ tributes to Peter (Newcastle Journal, April 23rd, 2005, Hardcopy Archived)

Inmates of US jails were paid to donate blood to  patients: Peter was given infected blood from prisoners (Evening Chronicle, November 10th 2005, Hardcopy Archived)

Health report to reopen controversy on infected blood: Widow is to learn how husband got killer transfusion (Evening Chronicle, December 22nd, 2005, Hardcopy Archived)

https://www.chroniclelive.co.uk/news/north-east-news/widow-learn-how-husband-killer-1604642

Year 2006

Blood transfusions probe a whitewash- widow (Newcastle Journal, Feb 28th 2006, Hardcopy archived)

Year 2007

Contaminated blood inquiry is announced: Investigation planned into treatment disaster (Newcastle Journal, February 20th, 2007, Hardcopy Archived)

A public health disaster: A North MP last night demanded health chiefs open their records to an inquiry into the use of contaminated blood in the NHS (Newcastle Journal, February 21st 2007, Hardcopy)

https://www.questia.com/newspaper/1G1-159571524/a-public-health-disaster

Blood widow is to testify, Archer (Chronicle, April 18th 2007)

http://www.chroniclelive.co.uk/news/north-east-news/blood-widow-is-to-testify-1492051

Blood case same as US syphilis scandal (Newcastle Journal, April 19th 2007)

http://www.thejournal.co.uk/news/north-east-news/blood-case-same-syphilis-scandal-4531270

Bad blood risk advice ignored: Haemophiliacs condemned to death (Newcastle Journal, May 26th, 2007 Hardcopy Archived, there was Opinion also not in collection)

Year 2008

Year 2009

Widow hails blood inquiry (Find Articles, February 20th, 2009) (Archived)

http://findarticles.com/?noadc=1

Report due on contaminated blood scandal (Newcastle Journal, 23rd February 2009)

http://www.thejournal.co.uk/news/north-east-news/report-due-contaminated-blood-scandal-4488447

Journals Bad Blood campaign praised (Newcastle Journal, 24th February 2009)

http://www.thejournal.co.uk/news/north-east-news/journals-bad-blood-campaign-praised-4488562

The past can’t be re-done but now there is hope; Carol Grayson’s Husband Died in a shocking NHS bad blood scandal. Chris Robinson speaks to her about her battle for justice (Chronicle (via Questia) February 24th 2009)

https://www.questia.com/read/1G1-194324399/the-past-can-t-be-re-done-but-now-there-is-hope-carol

Praise for press campaign nearly 10 years on (Hold The Front Page) March 2nd 2009)

http://www.holdthefrontpage.co.uk/2009/news/praise-for-press-campaign-nearly-ten-years-on/

Research prize for blood campaigner (Newcastle Journal, 14th March 2009)

http://www.thejournal.co.uk/news/north-east-news/research-prize-blood-campaigner-carol-4485637  

Fight for justice for infected blood victims will go to Europe (Newcastle Journal, 21st May 2009)

http://www.thejournal.co.uk/news/north-east-news/fight-justice-infected-blood-victims-4482079

Year 2010

North east widow angered at leaked papers on blood scandal costs (Newcastle Journal, 24th March, 2010 Archived)

http://www.thejournal.co.uk/north-east-news/todays-news/2010/03/24/widow-angered-at-leaked-papers-on-blood-scandal-costs-61634-26096475/2/

Carol Grayson hits out at government over blood scandal (Newcastle Journal, October 15th 2010)

http://www.thejournal.co.uk/news/north-east-news/carol-grayson-hits-out-government-4447822

Year 2011

Year 2012

Widow bids for Oscar’s glory: Campaigning ex-nurse funds film out of compo cash (Sunday Sun, February 26th, 2012, Hardcopy Archived)

Year 2013 

Year 2014

Year 2015  

Newcastle widow left cynical over PMs apology (Newcastle Chronicle, 26th March 2015)

http://www.chroniclelive.co.uk/news/north-east-news/newcastle-widow-left-cynical-pms-8922123

Year 2016

Year 2017

Contaminated blood scandal that infected Jesmond man with HIV deliberately covered up (Newcastle Chronicle, 26th April 2017)

http://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-infected-jesmond-12944741

A bloody disgrace (Chronicle, April 27th, 2017)

https://www.thefreelibrary.com/A+bloody+disgrace.-a0490690818

What is the Contaminated Blood Scandal? (Chronicle, July 11th 2017)

http://www.chroniclelive.co.uk/news/north-east-news/what-contaminated-blood-scandal-killed-13317170

Newcastle wife of contaminated blood victim calls for Hillsborough -style inquiry (July 11th 2017)

http://www.chroniclelive.co.uk/news/north-east-news/newcastle-wife-contaminated-blood-victim-13316750

“We need answers” North Shields dad infected in contaminated blood scandal speaks out (Newcastle Chronicle, July 15th, 2017)

https://www.chroniclelive.co.uk/news/health/we-need-answers-north-shields-13335244

Contaminated blood scandal: Were vital records from the 1970s and 1980s destroyed?

Newcastle widow is “furious” after learning key documents from the Haemophilia Society are “destroyed or missing” (Chronicle Live, Sept 13th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-were-vital-13614220

Contaminated blood scandal: Victims and their families win ruling to seek damages (Chronicle Live, September 26th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-victims-families-13678854

Bad blood scandal: Leaked papers “show evidence of a cover-up”, campaigners say (Newcastle Evening Chronicle Live, October 25th 2017)

https://www.chroniclelive.co.uk/news/north-east-news/bad-blood-scandal-documents-show-13809809

Year 2018

Bad blood scandal: Judge promises “thorough examination” after being appointed to lead inquiry (Newcastle Chronicle Live, February 18th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/bad-blood-scandal-judge-promises-14265164

Contaminated blood scandal: Families and campaigners score another small victory ahead of inquiry (Newcastle Chronicle Live, March 29th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-families-campaigners-14472203

Contaminated blood scandal: Newcastle widow calls for “justice to be delivered” (Newcastle Chronicle, July 3rd, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-scandal-newcastle-widow-14860924

Contaminated Blood Inquiry: Those who knew haemophiliacs were given deadly blood transfusions “must pay” (Journal, September 25th, 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-inquiry-those-who-15200482

Contaminated blood inquiry: Government says “sorry” and admits there may have been a “cover-up” (Newcastle Chronicle, September 26th 2018)

https://www.chroniclelive.co.uk/news/north-east-news/contaminated-blood-inquiry-government-says-15205710

Year 2019

Infected blood inquiry: Wife of NHS blood contamination victim demands action (Chronicle, 30th April 2019)

https://www.chroniclelive.co.uk/news/health/infected-blood-inquiry-carol-grayson-16205404

Man’s 35-year nightmare after being infected with Hepatitis C after Jesmond Dene skating accident (Chronicle Live, 20th June, 2019)

https://www.chroniclelive.co.uk/news/north-east-news/mans-35-year-nightmare-after-16461441

Year 2020

Infected blood scandal: Newcastle widow hopeful victims will finally get compensation (30th Jan, 2020)

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-scandal-newcastle-widow-17653749

Victims of infected blood scandal were ‘failed’ by medical profession and politicians – Lord Owen (Chronicle Live, 23rd September 2020)

https://www.chroniclelive.co.uk/news/north-east-news/victims-infected-blood-scandal-were-18979379

Year 2021

Infected Blood Inquiry: Newcastle doctor said Government and NHS made ‘fatal mistake’ (Chronicle Live, 3rd Feb, 2021)

https://www.chroniclelive.co.uk/news/north-east-news/infected-blood-inquiry-newcastle-doctor-19755959

Imported blood warning revealed (Chronicle, 4th Feb 2021)

https://www.pressreader.com/uk/the-chronicle-9c96/20210204/281840056349661

‘It’s huge’: Government to increase financial support for contaminated blood scandal victims (Chronicle Live, 26th March 2021)

https://www.chroniclelive.co.uk/news/north-east-news/blood-scandal-compensation-jesmond-government-20255341

Matt Hancock pledges compensation to contaminated blood scandal victims if inquiry calls for it (Chronicle Live, 24th May 2021)

https://www.chroniclelive.co.uk/news/health/matt-hancock-pledges-compensation-contaminated-20666032

Former health minister says Margaret Thatcher’s ‘attitude to AIDS’ blocked progress on blood scandal compensation (Chronicle Live, 22nd September 2021)

https://www.chroniclelive.co.uk/news/health/matt-hancock-pledges-compensation-contaminated-20666032

Year 2022

Northumberland victim of infected blood scandal worried Sue Gray investigation will cause delays (Chronicle Live, 24th Jan, 2022)

https://www.chroniclelive.co.uk/news/north-east-news/sue-gray-partygate-infected-blood-22827674

‘Embarrassingly large’ stocks of available UK blood products weren’t used by Newcastle doctors, Infected Blood Inquiry hears (Chronicle Live, 10th Feb 2022)

https://www.chroniclelive.co.uk/news/health/infected-blood-newcastle-inquiry-transfusion-23035073

Jesmond infected blood campaigner’s anger over being “left out” of key compensation meeting documents. (Chronicle Live, 14th Feb, 2022)

https://www.chroniclelive.co.uk/news/health/contaminated-blood-carol-grayson-francis-23091842

“Don’t treat us with disdain” -Blood scandal victims demand publication of compensation report (Chronicle 21st March 2022)

https://www.chroniclelive.co.uk/news/health/dont-treat-disdain-blood-scandal-23452733

Government changed its mind on Infected Blood Inquiry “because of pressure from campaigners” (Chronicle, 30th March 2022)

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

“I’m sorry people have had to wait 30 years” former health minister tells Infected Blood Inquiry (Chronicle, 20th May, 2022)

https://www.chroniclelive.co.uk/news/health/health-minister-infected-blood-inquiry-24013950

Infected blood scandal victims should be compensated at least £100,000 reports suggest (Chronicle, 8th June, 2022)

https://www.chroniclelive.co.uk/news/health/infected-blood-scandal-victims-compensation-24170895

Newcastle haemophiliacs should have been told they were at “clear and special risk of AIDS”, inquiry hears (Chronicle 10th June, 2022)

https://www.chroniclelive.co.uk/news/health/blood-inquiry-newcastle-haemophiliacs-aids-24192542

Carol Grayson (Haemophilia Action UK) copyright

An important point to make regarding reporting on the contaminated blood scandal, although North-East media has been exceptional, this is not so for some of the nationals that dismissed that there was a story to tell or grossly misreported events some by accident, others by design. For example a large percentage of media reporting since 2017 have been factually incorrect.

Back in 2005, Grayson worked closely with Sir Patrick Jenkin to save all existing government blood policy files in government archives, now held at the National Archives, Kew and other repositories. At that time the government agreed no further documents would be destroyed. These included tranches from look back studies on hepatitis, v CJD and decades of government blood policy including the documents used in the Self Sufficiency Report, discussions on the HIV litigation and related documentation of how this material had been saved.

Grayson also discovered and returned in 2006, copies of HIV litigation documents that government destroyed including some of Lord Owen’s papers. Unfortunately, unscrupulous media have since reported that these documents have been “newly discovered” by new campaigners from 2017 when in fact Grayson discovered and has been using these documents for years, sometimes decades, plus returned some to the Department of Health via a lawyer which were initially released in batches onto a website, later transferred to NA Kew and which can now can be accessed under Freedom of Information by other campaigners. It is a travesty of justice against the wider haemophilia community to misreport dates, alter timelines and not to reference researchers.

Once again the government did not keep its word and the legal department destroyed not the evidence itself but the series of letters documenting Grayson returning documents to the Department of Health solicitors and the circumstances of that return, fortunately Grayson kept copies or she would have been conveniently wiped from history.

So returning to representations of contaminated blood history, the message to haemophiliacs and their families is to read carefully every story in the media, check your facts, question and don’t be duped with a fake story however “real” it may seem. It is important to note that “spies” posing as campaigners were embedded in the US haemophilia campaign for justice. Some campaigners were sought out and funded by pharma companies and others used to present an altered version of history. The vast majority of what is being described by UK media as “new” evidence has been used before, presented to minister after minister, in letters, emails, debates, old media and face to face meetings. The biggest scandal since infecting haemophiliacs has been to block and ignore that evidence, deny victims a public inquiry and delay justice and compensation for decades until most infected and some affected are dead. However, despite massive obstacles placed before them, long standing campaigners infected and affected have refused to give up, they will have their day of justice and haemophilia history will be recorded correctly and preserved safely for future generations to read.

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 Righ

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Contaminated Blood: Haemophilia Action UK initial response to Sir Robert Francis compensation framework recommendations and a meeting with Yvette Cooper 2002

Haemophilia Action UK campaigners march down Downing Street, left the late Ollie Carruthers, Carol Grayson, the late Peter Longstaff, independent campaigner Colette Wintle and her then MP Archie Norman
(Image via Colette Wintle early 2000s)

I note the release of the Sir Robert Francis Report looking at a compensation framework for victims of the Contaminated Blood scandal. I thank those involved but urge caution. Some long standing campaigners have yet to give evidence to the Infected Blood Inquiry and that is our focus right now with our legal team at Milners and with Sam Stein our QC. I continue to allege negligence and that the case for compensation goes way beyond a “moral argument”. It is also concerning that in the run up to the report, Sir Robert Francis failed to document the proposals of some activists in meetings held with him, including my own phone conference with fellow campaigner Colette Wintle, fortunately campaigners document everything.

The bottom line is that government must pay compensation for each virus, hepatitis B, C, HIV and any others and adequately compensate infected and affected and the estate of the bereaved. Government must also recognize the repeated REINFECTION of haemophiliacs with multiple deadly viruses each time they injected US factor concentrates manufactured using plasma donations from the highest risk sources. American plasma pools could reach as high as 400,000 paid donors compared to around 25,000 volunteer donors in the UK. Compensation is not a buy one get one free supermarket deal of infections but a recognition of loss and cumulative harm from each virus addressing the needs of each individual and the impact on loved ones.

Haemophiliacs were also exposed to v CJD and they and their families have lived with the anguish of not knowing for decades if they are incubating the prion disease because there is no test available to date.

This week is an important week at the Inquiry as we will be hearing how government failed to respond to key evidence presented in face to face meetings between haemophilia campaigners and ministers in the early 2000s ignoring calls for a public inquiry even as many haemophiliacs lay sick and dying. It is clear activists working jointly with the Newcastle Journal and Chronicle “Bad Blood” campaign were a thorn in the side of government. We now know this from civil servants own comments behind the scenes only recently seen and the impact we were having which led to government making considerable efforts to block proper compensation for victims of the Contaminated Blood scandal for another 2 decades!

Issues discussed at a meeting with Yvette Cooper at Westminster 15th May 2002 included as follows:-

Lord David Owen’s self sufficiency arguement, his financial commitment and concerns over his missing documents.

The Dr J Garrot Allen letter, (1975) warning letter (from the World in Action documentary) regarding the hepatitis risk from using US paid skid -row and prison donors.

The ethics of treatment and the right to “informed consent”, haemophiliacs as guinea pigs, experimentation.

Not adequately informing patients of risks from factor concentrate treatment.

The state of BPL (1979 Inspectorate’s report) and safety concerns and the state of the building.

The use of “hepatitis rich” gay donors in the US, gay donor ads shown.

Arkansas prison plasma collection, information/evidence/photos shown from the sister of a US prison plasma donor, safety violations.

Yvette Cooper working on the Bill Clinton election campaign to the White House.

The Dr Spence Galbraith, (9th May,1983) warning letter to government to remove US treatment from the shelves in the UK due to the risk of AIDS.

Christine Lee policy not to discuss risks with patients mid 1980s.

Use of the safer cryoprecipitate compared to pooled plasma.

Testing for HIV/HCV without permission and with holding test results.

Stigma surround haemophilia and hepatitis C, that of HIV was already well known.

Rise in HCV death figures, misreporting.

The hepatitis waiver in the HIV litigation, (Peter Longstaff’s legal case).

The increased risk of viruses with higher pool sizes.

Conflict of interest with the Haemophilia Society due to funding from pharmaceutical companies.

The importance of all haemophiliacs being offered the safer recombinant synthetic treatment not only children.

Pictures shown of Manor House Group member bloated with hepatitis C.

Consumer Protection Act.

Peter Longstaff’s treatment strike, refusing human plasma, Judicial Review case for Recombinant.

Use of paid donors Henan, China scandal.

European Directive, to move away from using paid donors on the grounds of safety.

The need for a public inquiry.

Proper compensation.

The meeting was minuted by Ollie Carruthers for Haemophilia Action UK as we learnt from previous meetings with government, they are often fail to provide minutes. We shared these with the Manor House Group that attended the meeting as well as Haemophilia Action UK and the minutes have been presented to the Infected Blood Inquiry.

It is important to note that far from these issues being “new” as highlighted in recent media by certain campaigners that seem intent on claiming the above as their own work without referencing the research of long standing campaigners, many of the same issues were presented in the mid 1990s and in an earlier face to face meeting Colette Wintle and I had with Lord Philip Hunt as well as in countless letters, radio, TV news, documentaries and old newspapers. Both the Hunt and Cooper meetings were attended by Charles Lister who will give evidence this week at the Infected Blood Inquiry, MPs were also present.

Sir Robert Francis will present his compensation report shortly in person to Sir Brian Langstaff, Chair of the Infected Blood Inquiry. The recommendations could be accepted in full, partly accepted or rejected altogether, that remains to be seen. Sir Brian will release his report once all key witnesses are heard and he has compiled his own findings.

Carol Grayson (Haemophilia Action UK)

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: From AIDS to Monkeypox is anyone talking about blood safety?

Don Francis former Centre for Disease Control whose early warnings in the 1980s to exclude gay men from donating blood for fear of infecting haemophiliacs with the AIDS virus were ignored until it was too late (Image via COTT, AIDS conference Washington DC, 2009)

For longstanding haemophilia campaigners that lived through and researched the emergence of the AIDS virus in the early 1980s, it is impossible to forget the delays and denials regarding plasma safety and the alleged incompetence and negligence in terms of donor selection policies and protecting each nation’s blood supply. During the 1970s and 80s, thousands of UK haemophiliacs were infected with HIV and hepatitis viruses through contaminated blood after receiving pooled plasma products named factor concentrates used in the treatment of their inherited bleeding disorder. Some families mourned the loss of multiple relatives as they died of AIDS and liver disease. The contaminated blood scandal is now the subject of the Infected Blood Inquiry chaired by Sir Brian Langstaff.

During the 1960s and 70s, US pharmaceutical companies relied heavily on the use of plasma collected in the poorest areas of Haiti and Central American countries such as Nicaragua and Belize and turned a blind eye to the over bleeding and exploitation of donors selling their blood for a few dollars to feed their families or for their next drug fix. The process of plasmapheresis meant one donor could be bled 104 times each year. Plasmapheresis is described by Healthline as “a process in which the liquid part of the blood, or plasma, is separated from the blood cells. Typically, the plasma is replaced with another solution such as saline or albumin, or the plasma is treated and then returned to your body”

The New Scientist stated in 1975, “as Professor Titmus (author of The Gift Relationship, 1971) highlighted, ‘authorities have drawn attention to the fact that the purchase of blood attracts many alcoholics and other unfortunates who return frequently to blood banks and who know they will be deprived of money if they answer yes to questions about jaundice, malaria, other infectious diseases and hypersensitivity.'”

As time moved on and collection practices in Central America came under closer media scrutiny, public pressure led to the closing of these clinics and a move to focus on new donor communities in the US. Blood collection thrived in American skid row clinics opening up along the US/ Mexican border and the run down areas of inner cities. Pharmaceutical companies turned their attention to utilizing the blood of prison donors and gay men were actively encouraged to donate. Bleeding donors considered high risk for hepatitis viruses became the norm as more and more safety rules were violated.

UK haemophiliacs born with an inherited bleeding disorder where the blood does not clot effectively were reliant on treatment which contained the missing clotting factors. In the 1960s and 70s, haemophiliacs were treated with cryoprecipitate made from a small number of carefully screened British donors. The UK, unlike the US, had a volunteer donor system where people gave blood for altruistic reasons as opposed to financial gain and the British blood transfusion service was considered one of the safest in the world. The level of risk to haemophiliacs all changed in 1973 with the introduction of the so called “miracle” treatment, factor concentrates made from the pooled plasma of thousands of donors and so began the licensing of imported US factor concentrates.

For this particular article the focus is on the use of gay donors and bisexual donors and identify as men who have sex with men (msm). Advertisements published in the US in the gay magazines of the early 1980s show image after image inviting gay men who have had hepatitis B to donate. There was great interest in studying them for a vaccine… however there was also a disaster waiting to happen when the surplus of this so called “hepatitis rich” plasma (of men who sometimes infective) was added to the plasma pools used in the manufacture of factor concentrates.

Don Francis is an American epidemiologist whom this author met in Washington DC in 2009. Francis was at the centre of the emergence of the AIDS virus from 1981. He worked at the Centre for Disease Control and realizing very early on that evidence indicated AIDS was blood borne understand clearly the risk to haemophiliacs receiving plasma products. Blood was often collected in plasma wagons parked outside the bath houses in the Tenderloin area of San Francisco and also from men who took the opportunity to participate in unprotected sex with other men in cubicles even as they waited to sell their blood in US prisons such as Arkansas State Penitentiary. American documentary maker Kelly Duda looked at prison safety violations in his film, Factor 8:The Arkansas Prison scandal.

The link between gay men donating their hepatitis rich blood (hepatitis B being an early marker for the AIDS virus) and the danger to haemophiliacs of becoming infected drove Francis to highlight the need to exclude gay men from donating blood, not to judge their sexual preference but to safeguard the blood supply. What Francis faced however, (portrayed in the film And The Band Played On by actor Matthew Modine) was denial from the pharmaceutical companies and blood bankers unwilling to upset the “gay lobby” and risk unfounded accusations of “homophobia” so they delayed taking action even as the first cases of AIDS emerged in US haemophiliacs that received their blood.

So where did AIDS come from? A History of AIDS, states, “scientists have traced the origin of HIV back to chimpanzees and simian immunodeficiency virus (SIV), an HIV-like virus that attacks the immune system of monkeys and apes.”

Francis described to me at our hotel on Capitol Hill, the moment when he banged his fist on a table in anger and frustration famously asking “how many more have to die” before action was taken to remove gay men from selling their blood albeit wanting to help others but ultimately infecting recipients of their plasma with HIV and hepatitis viruses. In contrast to plasma pools of 20,000 in the UK, plasma pools in the US could reach as high as 400,000 donors as highlighted in Congressional Hearings, add to that the targeting and bleeding of gay men emerging from the bath houses and you were virtually guaranteeing infection.

In a May 1983 article in the Bay Area Reporter, Mike Hippler reported that,

“no one knows what causes AIDS, [but] many are afraid that, like gonorrhea and syphilis, it is communicable, and therefore the baths have come to represent a potential source of contamination. But are the baths a danger zone? … fucking around at the baths, or anywhere is a risk factor, but not a proven cause, says Dr. Dritz (of the San Francisco Department of Health’s Communicable Diseases Department.) But the more intimate contact you have with people, the more chance you have to pick up something from those people, (gay men)’” While individuals for and against closing the bathhouses waged war in the newspapers throughout 1983, 72 San Franciscans died of AIDS complications. Every year the numbers increased. There was panic, from within the queer community and more damagingly from without.” 

See also,

One gay man contributing his oral history to a San Francisco archive highlighted that before HIV testing was introduced, he would donate blood as a way of demonstrating to others that he was not infected and avoid any stigma associated with being gay. He failed to say whether he was later found to be incubating the AIDS virus or not?

Thousands of haemophiliacs were infected with hepatitis B, C and HIV around the world from US factor concentrates and went on to die as a result of the use of virally high-risk donors and the failure to act quickly enough in removing gay donors among others from the plasma pools. Although there were some early documented cases of AIDS in the UK where haemophiliacs were exposed to the blood of volunteer gay blood donors carrying the AIDS virus, it was much smaller compared to the risk from imported factor concentrates made from the pooled plasma of hundreds of thousands of high risk remunerated donors. Francis can be viewed discussing that time on the following link,

Don Francis Pillars of Democracy, Tainted Blood video

CPAC October 19th, 2017

https://www.youtube.com/watch?v=yTV333zzV1Y

Fast forward 40 years to the 2022, is blood safety still of concern to haemophiliacs?

There has certainly been considerable progress with the widescale introduction of viral inactivation, heat treating blood products and the use of recombinant synthetic clotting factor instead of a total reliance on human plasma derived products. There is also the emerging world of gene therapy. However haemophiliacs are not out of the woods yet. This author was interested to read the following in an article titled, “Plasma or Recombinant products for Hemophilia?” from Ash Clinic News in the US published in 2018, where young children were still being prescribed plasma products, as follows,

The other point I make when explaining plasma-derived products to new patients is that plasma products could reduce their risk for developing inhibitors – an extremely serious complication of hemophilia.

The patient population that I would recommend plasma-derived products to are what we call PUPs, or “previously untreated patients.” That recommendation is based on data from the Survey of Inhibitors in Plasma-Product Exposed Toddlers, or SIPPET trial, that was presented as a plenary abstract at the 2015 American Society of Hematology Annual Meeting and later published in The New England Journal of Medicine.2,3 In SIPPET, we investigated whether the development of inhibitors was related to the type of concentrate used for factor replacement therapy. Of 251 PUPs with hemophilia A enrolled, 125 were assigned to receive plasma-derived FVIII–containing von Willebrand factor (vWF), and 126 were assigned to receive recombinant FVIII with no vWF.

We found that PUPs treated with plasma-derived products had about a 50 percent lower rate of developing inhibitors, compared with those treated with recombinant factors.3 Based on these data, I think the target population for plasma-derived products would be pediatric PUPs, because we want to do whatever we can to limit or prevent the number of inhibitors that occur in patients with hemophilia.

Dr. Dunn: However, treating patients with plasma-derived products requires much higher volumes of products for infusion, compared with recombinant products, which only require a couple milliliters of concentrate. So, if I’m treating pediatric patients, who have tiny blood vessels, with plasma products, I might need to use central venous access devices to deliver the higher volumes of plasma necessary. Implanting a central venous access device, though, means major surgery, which introduces risks associated with anesthesia, infection, and the device itself. If I can ever avoid surgical procedures in patients with hemophilia, I certainly want to do that. I can infuse smaller-volume recombinant products more easily through peripheral veins in pediatric patients.

Dr. Young: The other instance when I would prefer plasma-derived products is in patients who have already developed inhibitors. We also use plasma concentrates when we perform immune tolerance induction therapy, in which we give repeated doses of FVIII to try to eradicate inhibitors.

Read on…

https://ashpublications.org/ashclinicalnews/news/3807/Plasma-or-Recombinant-Products-for-Hemophilia

So not every haemophiliac is receiving recombinant. Some haemophiliacs still receive human factor concentrates which may be related to inhibitors, personal preference or efficacy as some haemophiliacs feel plasma derived products work better for them than recombinant. In addition, haemophiliacs may require whole blood like the rest of the population for accidents, joint operations and liver transplants for those infected with hepatitis C. So we must be ever vigilant regarding blood safety. The haemophilia community and their families are not generally scientists though there may be individual exceptions so are reliant on others to monitor the safety of the blood supply. However through lived experience those that have survived and their loved ones are always looking out for the next virus… to quote former Health Minister Lord Owen, “its not if a new virus comes along but when” and the v CJD prion for example can’t be eradicated in the same way as HIV and hepatitis viruses. In the case of monkeypox now emerging, it is not even a new virus but one that is not often seen outside of west and central Africa and which in the latest infections does not appear to be following its usual pattern/spread of the virus.

The NHS advice regarding “How do you get monkeypox” can be read here as follows:-

How you get monkeypox?

Monkeypox can be caught from infected rodents (such as rats, mice and squirrels) in parts of west and central Africa.

You can catch monkeypox from an infected animal if you’re bitten or you touch its blood, body fluids, spots, blisters or scabs.

It may also be possible to catch monkeypox by eating meat from an infected animal from central or west Africa that has not been cooked thoroughly, or by touching other products from infected animals (such as animal skin or fur).

Monkeypox can also spread from person to person through:

  • touching clothing, bedding or towels used by someone with the monkeypox rash
  • touching monkeypox skin blisters or scabs (including during sex)
  • the coughs or sneezes of a person with the monkeypox rash

https://www.nhs.uk/conditions/monkeypox/

As the well respected Nam AIDSMAP pointed out on the 25th May, “the World Health Organization (WHO) has now confirmed nearly 100 cases of monkeypox in over a dozen countries, with the largest number in the UK”. Although it is emphasized that “anyone can catch the virus through close personal contact” the publication also states,

Cases so far have “mainly but not exclusively been identified amongst men who have sex with men,” according to WHO. Among the Global.health cases with a known sex and age, all but three are young or middle-aged men. Many of the affected men identify as gay or bisexual or sought care at sexual health clinics. Several cases are reportedly linked to a sauna in Spain and a fetish festival in Belgium. Many of the men reported recent international travel.

https://www.aidsmap.com/news/may-2022/monkeypox-spreading-among-gay-men-worldwide

There are now estimated to be around 179 cases in the UK alone and CNBC reports, “globally, 555 confirmed and suspected cases have now been reported in countries outside of Africa.” New guidelines issued are as follows,

  • U.K. health authorities have urged anyone who tests positive for the monkeypox virus to abstain from sex until their symptoms have cleared.
  • The U.K. Health Security Agency also recommended that previously infected persons continue to use condoms for a period of eight weeks after the virus has passed to combat rising cases.

https://www.cnbc.com/2022/05/31/britain-urges-people-with-monkeypox-to-abstain-from-sex-as-cases-rise.html

It is important to warn men who have sex with men to monitor their health, be aware of the symptoms of monkeypox which can be found on the link below and follow public health advice on reporting and isolating should suspected infection be present.

This is particularly important as Pride months is coming up and this is addressed in an article by Helen Bransworth for StatsNews

“Health officials scramble to raise monkeypox awareness ahead of Pride Month”

But what of blood safety? Who is addressing that? Is there a risk of transmission via blood and blood products and if so how big is that risk? This author is yet to see any comment with regard to blood donation and monitoring blood safety.

The US and the UK were notoriously slow to act on AIDS, especially when it came to excluding gay donors, putting sensitivities over blood safety. This cannot happen again. The public need to know whether donor guidelines need to be reviewed with the new monkeypox cases? Is there a test for monkey pox regarding blood and is it in place? Are there ways of ensuring monkey pox is not present in the blood supply? Would current viral inactivation techniques completely elimate monkeypox?

This author has submitted initial questions to the Department of Health and Social Care and discussed her concerns with fellow haemophilia campaigner Colette Wintle and Kate Burt, CEO of the national Haemophilia Society who can raise questions directly with The Advisory Committee on the Safety of Blood, Tissues and Organs (SABTO) that quote, “advises UK ministers and health departments on the most appropriate ways to ensure the safety of blood, cells, tissues and organs for transfusion/transplantation.” The SABTO website can be viewed on the following link,

https://www.gov.uk/government/groups/advisory-committee-on-the-safety-of-blood-tissues-and-organs

For many years there was a blanket ban on msm donating blood but that has recently been lifted in many countries including the UK. Haemophiliacs and their families among the most infected and affected by AIDS through blood and blood products were furious to find out that discussions leading up to the reversal on the ban on gay men donating had excluded them and their representatives from contributing to the ongoing debate over blood safety. Details of the changes and new blood donor guidelines are on the following link,

Landmark change to blood donation eligibility rules on today’s World Blood Donor Day (Blood News, 14th June, 2021)

https://www.blood.co.uk/news-and-campaigns/news-and-statements/landmark-change-to-blood-donation-eligibility-rules-on-today-s-world-blood-donor-day/

and

Men who have sex with men (MSM) NHS Blood Donation

https://www.blood.co.uk/who-can-give-blood/men-who-have-sex-with-men/

There is a fear that once again anyone questioning or challenging the current practice of accepting blood from msm will once again be viewed as “homophobic” as opposed to expressing concern over whether current safety practice is adequate and ensuring the safest possible blood supply.

This author has submitted the following questions to the Department of Health on the 21st May 2022,

Dear Sir/Madam,

1) Under a Freedom of Information request, how many cases of monkeypox are in men who have sex with men that have already been immunocompromised with HIV infection?

2) What precautions are the UK taking to protect the national blood supply from monkeypox given that the government recently reversed blood safety policy to include men who have sex with men as blood donors?

With thanks

Carol Grayson

Name and address supplied

This was followed up with further questions on the 23rd May 2022 as follows:-

Dear Sir Madam,

I am writing to you under the Freedom of Information Act to ask the following questions.

1) Whose decision was it to reverse the safety policy on excluding gay men from donating blood to now allow men who have sex with men to donate?

2) Why was this done without any representation from the haemophilia community where the serious failures in delaying excluding gay men led to some haemophiliacs being directly infected with HIV and hepatitis viruses.

3) What improved safety measures are government now considering regarding blood donation policy with the arrival of new cases of monkeypox in men who have sex with men?

With thanks

Carol Grayson

(Name and address supplied)

It now appears that monkeypox may have been circulating in the UK longer than realized and the incubation period is uncertain. Clearly haemophiliacs are once again concerned having been traumatised over and over again, infected with multiple deadly viruses and then exposed to variant CJD (Creutzfeldt-Jakob disease).

Colette Wintle a female haemophiliac wrote to her legal team representing her at the Infected Blood Inquiry and to Kate Talks (Haemophilia Society),

Dear all

Latest reporting on the spread of monkey pox virus and the desperate attempt to disassociate it from the gay/bisexual community to avoid stigmatising them I fear will cause the DOH and other organisations to ignore the bigger picture of risks to the blood supply and once again ignore the rights of vulnerable patient groups like haemophiliacs to be protected.

This has nothing to do with homophobia but it’s a huge and legitimate concern that our safety will be compromised as it was with HIV and hepatitis .during the 70’s 80’s and 90’s.

The reality is that it clearly is being spread by gay / bisexual communities . How do we approach organisations like THT to encourage them to advise the people they represent to avoid donating their blood without becoming a target ourselves of attack?  Other than contacting SABTO and the UKHCDO should we try and get a meeting with the Secretary of State for Health? Any thoughts on that?  It’s really concerning that nothing has been written so far about advising people who are high risk of being infected  to desist from being a blood donor.  I am really worried about this situation.

Kind regards

Colette

Unfortunately the government has not helped relationships between haemophiliacs and the Terrence Higgins Trust that represent msm by once again employing “divide and conquer” tactics. THT is a British charity that campaigns about and provides services relating to HIV and sexual health. Haemophiliacs were infected with HIV through their plasma treatment. The reversal on the msm donor ban by government bodies was indeed timely given that the Infected Blood Inquiry is now underway looking at historical infection and past collection of plasma from HIV and hepatitis infected gay donors. Is the government once again attempting to whitewash the “haemophilia holocaust” and draw attention away from the highest risk practices of the 1970s and 80s involving gay donors? The exclusion of the Haemophilia Society and campaigners in the debate ensured there was no honest conversation with haemophiliacs and their families and ensured there was less opposition over reversing the ban on gay donors. Given their horrendous history of infection it is only natural haemophiliacs worry continuously over blood safety.

To add insult to injury, in an act of incredible insensitivity, in recent years, that the government scrapped the Macfarlane Trust set up to provide financial support to HIV infected haemophiliacs and affected families following litigation against the government in 1991 and transferred the remaining funds over to the Terrence Higgins Trust. Although there are gay men in the Haemophilia community, the issues of haemophiliacs are very different to those of msm. Haemophiliac’s issues are focused on historical injustice, alleged negligence, experimentation, treatment with factor concentrates in families where several family members may be infected with multiple viruses and prion exposure (CJD). The haemophilia experience of iatrogenic infection is very different to that of many non haemophiliacs with HIV hence the setting up of the Infected Blood Inquiry. However the pain and suffering of all infected with deadly viruses is recognized by this author and the best treatment and support must be provided for all.

It is important to note that the 1991 haemophilia HIV litigation was kept out of court, no compensation was ever paid but ex-gratia lump sum payments were made to infected haemophiliacs and some infected partners to assist financial need and monthly payments were provided via the Macfarlane Trust including to widows and for children. The trust also set up support week-ends and educational days for families. Years later the Skipton Fund was set up for those infected with hepatitis C and affected families.

However the government made a decision to scrap the trusts despite this author being assured in a Macfarlane Trust meeting of the Joint Partnership Group that the Trust and the monthly payments would remain until the last infected and affected beneficiary died. Suddenly a proposal was put forward to scrap 5 trusts including the Macfarlane Trust and Skipton and amalgamate them under the newly formed English Infected Blood Support Scheme (EIBSS) and its equivalent in the devolved nations. A meeting was held with a government appointed mediator to discuss proposals with haemophiliacs and their families but deliberately excluded long term campaigners so they could not raise objections.

Solicitors that had represented haemophiliacs in the HIV litigation were not informed and only learnt of the changes through their old clients afterwards who were denied the opportunity to seek advice on any legal implications. Some long standing campaigners only found out about the meeting after it took place, nor did they receive questionnaires to complete until it was too late. This author alleges the move to get rid of the Macfarlane Trust was allegedly undemocratic, unethical and possibly illegal. Government lied in public about all Trust beneficiaries/campaigners being consulted. Some haemophiliacs have refused to sign a consent form regarding the transfer of their papers to the Terrence Higgins Trust in protest.

Campaigners accuse the government of “pinkwashing” using THT when haemophiliacs have been extremely outspoken over 4 decades of campaigning on blood safety and issues affecting their community. They do not need THT speaking for them and if the same had been done to THT it is likely they would have been objecting strongly to haemophiliacs taking over THT and claiming to represent msm.

Pinkwashing is a tactic often employed by Apartheid Israel (with whom the British government under Boris Johnson and Keir Starmer, opposition leader are very close).

Pinkwashing is an Israeli government propaganda strategy that cynically exploits LGBTQIA+ rights to project a progressive image while concealing Israel’s occupation and apartheid policies oppressing Palestinians. 

See

SAY NO TO PINKWASHING

https://bdsmovement.net/pinkwashing

Pinkwashing is being used here to divide haemophiliacs and distract away from their voices, giving financial control of Macfarlane monies to the Terrence Higgins Trust instead of the Haemophilia Society. As haemophiliacs await the forthcoming report from Sir Robert Francis on a compensation framework for those infected and affected, the voices of long standing haemophilia campaigners are being watered down on what they actually want. They do not need THT speaking for them or determining the agenda. Government must address those infected and affected through contaminated blood directly. Haemophilia representation comes through joint working with their legal representatives and the National Haemophilia Society not THT or the APPG for Haemophilia and Contaminated Blood that sat on key evidence and awarded research for years, damage limitation for government?

THT recently announced that on the agenda of the next Macfarlane Conversation would be the following,

  • As part of Terrence Higgins 40th Anniversary, how we mark 40 years since HIV and haemophilia was first linked?

Is this a deliberate ploy to cause further distress to the Haemophilia community who were often infected through the blood of gay men as highlighted in US legal depositions and then had their HIV Macfarlane Trust allegedly illegally scrapped and passed over to THT. That will be quite some conversation!

This author does however recognize the positive work carried out by THT in some non haemophilia areas and indeed provided a quote in support of stopping cuts to services in parts of London, highlighting THT as follows,

“Community HIV services provide invaluable support and are a lifeline to those living with HIV that still suffer prejudice and discrimination. Cuts to these services at grassroots level is false economy as it means vulnerable persons will be missed or picked up much later and that could incur greater costs to hospital services. It makes no sense to remove key funding when HIV rates are above the national average in Lambeth, Southwark and Lewisham. Charities such as the Terrence Higgins Trust with decades of experience provide essential practical support and give guidance on benefits and housing as well as being there for the increasing numbers now struggling in poverty. THT also offer important counselling services. Having good support helps people to feel valued and to maintain independence in day to day living. Withdrawing funding is a very backward and unwelcome move and will cause unnecessary suffering to those infected.”

So far however most former Macfarlane Trust beneficiaries have not seen a penny from THT that appear inflexible on grants wanting only to give funding for counselling with requests regarding other needs turned down. It is surely time for THT to butt out of haemophilia campaigning and politics and stop using haemophiliacs as a means to attract additional funding.

This author has submitted the following previously unanswered questions regarding the scrapping of the Macfarlane Trust and transfer of funds to THT to the Department of Health, dated 30th May, 2022,

Dear Sir/Madam,

1) Under Freedom of Information please provide any documents discussing, or relating to the transfer of the Macfarlane Trust funds to the Terrence Higgins Trust (THT)

2) What was the reason THT were chosen as they are a sexual health charity with a history of specialising in the support of men who have sex with men? (Especially given the fact that many haemophiliacs were infected with HIV and HCV and died following the delays in excluding gay men from the plasma pools as highlighted in litigation testimonies.)

3) Why weren’t funds transferred to the Haemophilia Society that understand the needs of haemophiliacs with HIV/HCV and have a history of grant making to haemophiliacs?

4) Why did the government give false statements saying all haemophiliacs were included in the consultation to scrap the Macfarlane Trust and Skipton Fund when long standing campaigners of 30 years that had sat on the Joint Partnership Group of the Macfarlane Trust were deliberately excluded from the meeting with a government mediator to discuss their views?

5) Why were some campaigners not sent questionnaires until it was too late for them to submit their views.

6) Why was the process of consultation regarding scrapping the trusts both undemocratic and discriminatory?

7) Who made the decision to transfer Macfarlane Trust monies to the Terrence Higgins Trust?

With thanks

Yours sincerely

Carol Grayson

Address supplied

To return to monkeypox and blood safety… how has government response varied in relation to men who have sex with men and haemophiliacs? Within the last 3 weeks as monkeypox has emerged, there has been a quick response from government to advise msm on prevention and what to do if infected. On June 2nd, Reuters highlighted,

According to the UKHSA, the majority of cases in the United Kingdom – 132 – are in London, while 111 cases are known to be in gay, bisexual, or other men who have sex with men (GBMSM). Only two cases are in women.

Recent foreign travel to a number of different countries in Europe within 21 days of symptom onset has been reported by 34 confirmed cases, or about 18% of the 190 cases of the disease that have been confirmed by the United Kingdom as of May 31.

So far, the UKHSA has identified links to gay bars, saunas and the use of dating apps in Britain and abroad.

“Investigations continue but currently no single factor or exposure that links the cases has been identified,” the agency cautioned.

Monkeypox can affect anyone, but many of the most recent diagnoses are the GBMSM community – many of whom live in, or have links to London, said Kevin Fenton, London’s regional director for public health.

https://www.reuters.com/business/healthcare-pharmaceuticals/health-agency-confirms-community-spread-monkeypox-england-2022-06-02/

There has not been one single statement from government so far to reassure the haemophilia community regarding current blood safety and no attempt whatsoever to engage with campaigners to try to allay any fears. Once again haemophiliacs are a forgotten community put on the backburner. It is unlikely government will want to draw further attention to past blood safety violations with the contaminated blood compensation framework proposals about to be released and with the recent changes to allow msm to donate (deemed controversial by some). If past experience is anything to go by, government will continue to be focused on denying culpability, minimizing payments to the those infected and affected and reneging on commitments given to provide “substantial compensation”. Nor will government want today’s blood safety guidelines placed under direct scrutiny in relation to monkeypox and msm just in case once again they have failed us!

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 A

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