Carol Anne Grayson and her husband Peter Longstaff who was killed by the state after receiving contaminated blood. Grayson alleges Terrence Higgins Trust are “haemophobic” presenting a very selective narrative of haemophilia history
(Image Grayson archives)
As a result of haemophiliacs infected with HIV and hepatitis viruses during the 1970s and 80s initiating a legal case against the Department of Health and other authorities, in what was to end in an out of court settlement in 1991, the Macfarlane Trust was set up to provide financial support to haemophiliacs infected with HIV and their families. Haemophiliacs are a distinct patient group recognised as having an inherited bleeding disorder. They became infected through the use of factor concentrate treatment used to help their blood clot. This was often imported from the US where “high- risk” donors such as homosexuals, prisoners, drug addicts, sex workers and “skid row donors” were targeted for their plasma which was sold to international pharmaceutical companies. It only took one infected donor in a plasma pool to cause an infection in a haemophiliac recipient and it is now known that plasma pool sizes were far higher in the US and could reach as high as 400,000 donors.
Haemophiliacs were never compensated in 1991, incriminating documents only seen years later were kept out of court and litigants received an “ex- gratia” payment which differed in amount depending if a haemophiliac was married or single. To add insult to injury, haemophiliacs were made to sign a controversial Undertaking, nicknamed the “waiver” which meant most haemophiliacs signed away their rights not knowing they were infected with hepatitis C as test results were withheld until after they signed. Sometimes patients would not be notified until years later as was the case of this author Carol Anne Grayson’s husband, Peter Longstaff, a severe haemophiliac with less than 1% clotting factor infected with HIV and hepatitis viruses. In a legal opinion sought by Longstaff from the then Head of the Bar Association, Matt Kelly QC, he commented on evidence submitted by the couple direct from the 1991 litigation papers stating,
At Paragraph 20 for example it is clearly pleaded that haemophiliacs were at great and particular risk of infection with Hepatitis B and/or NANB viruses and/or other viral infections from blood products used by them which, in the case of Hepatitis B and/or NANB could cause a serious illness of jaundice, liver disease and could sometimes lead to death, and in the case of other viral infections could cause serious illness and could lead to death. The same was pleaded in relation to the risks of commercial concentrates.”
Kelly concludes,
I have the greatest sympathy for Mr Longstaff. His life has, not to put too fine a point on it, been destroyed by the infected blood he was given. He was told by one of the key solicitors in the litigation not to worry about hepatitis C when it was plain that hepatitis C carried with it enormous risks and was a matter of grave concern.
Haemophiliacs engaging with the Macfarlane Trust have experienced many challenges over the years and there were concerns at how registrants were viewed and treated by those running the organization. It was sometimes a fraught relationship for beneficiaries and rarely easy. Haemophiliacs fought for improvements in both financial and other support but what they didn’t expect was that a Trust they were assured by their lawyers decades ago was set up “for life” would one day be scrapped. This came to a head in 2018 when Macfarlane was closed down and monies from the Trust were transferred to the UK’s biggest sexual health charity, the Terrence Higgins Trust (THT). This was accomplished by deliberately excluding the longest standing campaigners from a meeting with a government mediator to discuss any concerns and some haemophiliacs and families did not receive questionnaires to elicit their views until AFTER the closing date. This transfer far from being seen as an improvement is now regarded by those infected known as “primary beneficiaries” and directly affected partners as an absolute disaster. THT website reflects their lack of understanding and selective approach to the haemophilia community. They state,
What is haemophilia?
Put simply, people with haemophilia bleed for longer if they get a cut. It’s an inherited (genetic) condition which mainly affects men, although women can be carriers (meaning they can pass it on to their sons) and can have a mild form of the condition.
THT website definition of haemophilia continues a decades long misogynistic attitude which fails to recognize that women diagnosed as haemophiliacs, can sometimes bleed severely and can bleed in different ways to men due to their biological identity. Also that many of the most problematic bleeds for haemophiliacs are internal causing joint damage, THT state,
Here is how THT represent the infection of haemophiliacs with HIV,
How are haemophilia and HIV connected?
During the late 1970s and early 1980s, haemophilia treatments were made from donated blood. Some of this blood came from people who had HIV or other blood-borne viruses, such as hepatitis C, so thousands of people with haemophilia (or who needed transfusions for other reasons) were infected. This is often referred to as ‘the blood scandal’.
Blood is now screened and factors are heat treated.
There is no mention of “high-risk donors” being used in the manufacture of factor concentrates.
THT continues,
Many haemophiliacs did not know that they had been infected until years later – this led to many partners and children also becoming infected. A long battle began with the UK government in a bid to secure compensation.
There is no mention of that fact that positive HIV/HCV test results were deliberately withheld from haemophiliacs sometimes for years. This is why haemophiliacs that were subjected to experimentation and suffered violations regarding the Nuremberg Code highlight the importance of pre and post test HIV and HCV counselling. Haemophiliacs question whether THT has now abandoned this in their emphasis on opt out counselling through A and E departments? Nor is their mention that lawyers were alleging gross negligence and government failures regarding “duty of care”. There is no mention either of the long fight for improved health care, passporting regarding disability benefits for those infected by the state or the need for specialist counselling as well as compensation by counsellors that understand the needs of a very specific patient group and know their history.
Initially, some haemophiliacs tried to work with THT but soon found staff were often unwilling to listen and appreciate their life experience and viewpoint and their history which was different to that of many in the gay community that THT were initially set up to represent. The Achilles heel for haemophiliacs in their obtaining the full backing of THT was what appeared to be an underlying resentment of the fact that haemophiliacs had been infected BY the state supplying infected blood products and not through sexual practice or sharing needles. This was translated into what some viewed as haemophiliacs been seen as an “innocent” party to their infection whilst in their eyes others were judged regarding routes of infection. The fact of how haemophiliacs acquired their multiple infections is quite simply a fact and one on which litigation has been based plus the setting up of a public inquiry to investigate what went wrong. The Inquiry includes looking at whole blood cases and thalassaemia also infected through blood transmission. This author alleges that it is the route of infection for haemophiliacs that has created a “conflict of interest” for THT and long held resentments which have now descended into toxic “punishment” of those infected and directly affected within the Macfarlane haemophilia community.
Grayson argues that this negative attitude is a form of “haemophobia”. The definition of haemophobia is “an extreme irrational fear of blood”. In the case of THT this is not necessarily the fear of blood in the physical form but rather the narrative of blood infection as it relates to haemophiliacs that must be controlled, ignored and cancelled out.
In the history of how haemophiliacs came to be infected is the harsh reality of how the blood of gay men was sold to pharmaceutical companies to be used in the manufacture of factor concentrates. In fact, US legal depositions obtained through the instruction of Grayson to her UK lawyers, Milners, shows that gay men were actively targeted for their “hepatitis rich blood” used in vaccine and other research and the surplus was added to the factor concentrate pools. Plasma wagons would be parked outside the gay bath houses of San Francisco as AIDS was emerging. Gay men were reluctant to stop donating as this was viewed as a sign of equal rights with straight donors. In addition, some closet gay men used the selling of their blood as a sign as “proof” to their families that they were “straight” so selling their blood had another useful purpose and overcame the need for safety first.
In the early 2000s, Grayson had contact with journalist Paul Cunningham of RTE who covered the Lindsay Tribunal and was awarded for his reporting on how haemophiliacs in Eire came to be infected through contaminated blood products. During this period, Grayson had been sent a collection of gay donor advertisements from a friend in Canada an advocate for infected haemophiliacs. Cunningham was interested to checking this out further in the making of his documentary titled, Bad Blood and once concluded, he received an Irish Film and Television Award.
As part of his investigations, Cunningham travelled to the US to investigate plasma collection at Louisiana State Penitentiary where male prisoners often practised unprotected sex with other inmates, some gay or bisexual and some due to the absence of female sexual partners. Grayson wrote to Inquiry investigators highlighting the importance of Cunningham giving evidence and he was duly contacted officially to provide a testimony. Under the heading Targeting Gay Men As Donors, Cunningham states,
As I said previously, one of the issues that we investigated was the deliberate encouragement of gay men to donate blood and/or plasma by US pharmaceutical companies
Charles Kozak, an American lawyer we interviewed for the film, told us that “homosexuals had built up a resistance to Hepatitis because of their sexual practices”. The “drug companies” therefore recruited gay men as donors as Hepatitis B antibodies in their blood was desirable.
He added,
We contacted Donald Francis, a former employee of the Centers for Disease Control and Prevention of the United States (hereafter, the ‘CDC’), the leading national public health institute. In this capacity, he advised pharmaceutical companies and tracked the development of diseases.
We met with Mr Francis in 2001. He provided us, at this meeting, with a deposition of his, that he had made prior to our meeting (Exhibit WITN3531003). As I understand it, the deposition was a supplemental expert report that is now a public court document in America.
The handwritten annotations on the copy attached to this statement are my notes and comments. The video testimony that we took of Mr Francis for the film closely mirrors the deposition.
He explained that “since 1996”, he learned that Cutter, Baxter and Alpha “collected plasma from urban homosexual men for Hepatitis B immunoglobulin (HBIG) production; used that same plasma in the manufacture of Factor VIII and IX concentrates prescribed for hemophilia; and continued to market this dangerous product after it was well-established that the source plasma presented the worst possible risk of AIDS to haemophiliacs”.
I saw this process as a perfect design for infecting haemophiliacs with HIV.
In Donald Francis’s words, “the same conduct that made urban homosexual men valuable plasma donors caused multiple other diseases that made this population inappropriate donors for any other blood or plasma product”.
Since THT have taken over the Macfarlane monies this is a part of haemophiliacs’ history which THT do not discuss. Instead, the current CEO Richard Angell has promoted gay men donating today but without any public acknowledgement of how gay men donating in the past led to many deaths within the haemophilia community and the trauma experienced by those still living now having to go to THT for money for counselling. Ironically changes to UK blood donation were made recently to include gay donors invited to discussion groups on how this should happen were carried out without any discussion with infected haemophiliacs to debate this openly and allay any fears they may have had, it was all about promotion of gay rights, haemophiliacs were not even a consideration regarding any potential safety concerns.
Once THT took over the Macfarlane Trust monies, they increasingly failed to listen to those infected and began to talk for them without understanding their history, specific needs and their complicated and hugely traumatising life experience. A letter was sent in 2021 from the Haemophilia Society and several campaign groups to request that they stop acting as the voice of the haemophilia community but to no avail. Grayson alleges this form of haemophobia from THT is about power and control and reducing the narrative of the Contaminated Blood scandal with its dark history of experimentation and human rights abuses.
Since then THT have announced their funding of Jason Evans, Factor 8 Group, the son of a haemophiliac who died from HIV who appeared for the first time in the media around 2017 promoting FAKE timelines of discovery of documents and distorting haemophilia history. This goes against the principle of fighting for truth and justice and plays down long standing haemophilia campaigners suffering of having incriminating evidence blocked from the 1990s onwards, ignored by government officials and “inadvertently trashed by junior civil servants”.
The question is, why would THT want a FALSE history presented, that would cause yet more trauma to victims, what is in it for them and why would they wish to SUPPRESS the truth? Is this haemophobia raising its ugly head and ensuring the TRUE history is not presented by THT. Evans who briefly highlighted the gay donor ads 2 decades AFTER Grayson first received hers is now silent on their significance and fails to acknowledge that campaigners highlighted this reality all those years ago. Instead, he places himself at the centre of the blood narrative in the media promoting LIES which are then published by unethical journalists whether by accident or design.
Questions to THT from beneficiaries of the scrapped Macfarlane Trust are delayed or totally ignored. This includes how THT are spending the transferred Macfarlane monies, the Tender process for research funding, how much Evans is being funded and what research he is carrying out. The only thing THT will provide money for is counselling which some beneficiaries can get for free anyway, yet THT will provide counselling or nothing. Attempts to seek funding for anything else is swiftly declined.
There is now a battle for the truth on social media. Haemophiliac Andrew Evans infected with HIV as a young boy has begun a daily tweet repeating the same questions each day, with Grayson joining him with her own questions. Evans tweeted,
Dear @THTorguk and @Factor8Campaign, Please explain in detail your financial relationship. Also,
@JasonEvansF8 please explain in detail how you are spending money given to you from the former MFT via @THTorguk and private donations. Thank you.
Followed by,
Day 17. No further along. No acknowledgement, certainly no response. No respect. No dignity. No accountability. Just contempt.
Postive- WomenOrg Frankie, an anonymous account from a woman infected via her haemophiliac partner tweeted,
Contempt, disrespectful clone of MFT. You continue to cause further damage by denying our right to understand how the MFT money is spent and what exactly are you giving funds to
@Factor8Campaign for. Appalling behaviour from both of you
Another account by the name of Positive Woman drew attention to issues over failure to minute meetings and how funds are being spent.
Primary beneficiaries in first User Group insisted minutes were taken as had been the case for Partnership Group of former Macfarlane Trust. We were closed down. Cancelled out. Why?
and
We are beneficiaries of a restricted fund. Primary Beneficiary term for infected which
@THTorguk refuse to recognise. They push use of the term Service User to invalidate our right as all beneficiaries to restricted funds.
Mark Anthony Ward, another haemophiliac infected as a child also known as Haemosexual presenting the rights of gay men as a gay man himself tweeted,
The UK’s biggest #HIV charity
@THTorguk has continued to ignore legitimate concerns from a small vulnerable group of HIV+ people which they ignored for 40+ years Is that compassion or abuse?
Grayson draws attention to the failure of THT to pay her the back money she is owed due to a historic mistake to her monthly widow’s allowance where they wrongly means tested the disability part of her state benefits. She has received an apology and acknowledgement from the English Infected Blood Support Scheme (EIBSS) set up in 2018 who paid her some back money from that date. However, they were unable to pay any before 2018 and the Cabinet Office referred Grayson to THT for the money owed before that date. Grayson said,
I allege THT are practising a haemophobic agenda against myself and others. Their attitude towards me is cruel, callous and comtemptuous. If they can afford to fund a non- infected, non- haemophiliac plagiarist they can surely afford to pay back money owed to the widow of a Primary Beneficiary who was an infected haemophiliac. They are punishing me by withholding what I am owed through a mistake where I am the injured party after all I have suffered already. I am aware they have helped other partners/widows of haemophiliacs, writing off loans so why am I being denied help? I was left in a very vulnerable financial position for years forced into debt due to a mistake by an official body meant to support me. This caused immense stress and made my depression and PTSD worsen. Although THT write to government claiming to speak for the rights of the haemophilia community and calling for compensation, their actions towards myself and others, cancelling out, blocking and silencing infected and affected and withholding back money do not match their words.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.
Carol Anne Grayson (Radical Sister) blog 