Haemophilia campaigners visiting No 10 Downing Street to hand in letters early 2000s

During the 1970s and 80s, UK haemophiliacs became infected with HIV and hepatitis viruses as a result of being given factor concentrate treatment provided by the NHS. Some of their treatment was imported from the US, manufactured from pooled plasma collected from the highest risk paid donors, such as prisoners, gay men, skid row donors and sex workers. Plasma pools could be as high as 400,000 donors and it only took one infected donor to infect a haemophiliac. This so called “miracle treatment” included “dumped treatment” seen as not fit for use in the US due to safety concerns and violations.

Over three decades ago, the national Haemophilia Society, campaigners and politicians worked together to highlight to government what was different regarding the haemophilia community infected with blood borne viruses in terms of their case for financial recompense from government. This criteria for haemophiliacs became known as the “Special Status” sometimes referred to as the “Special Case”. It also had implications for affected families, particularly adult partners of haemophiliacs that were financially codependent on those infected and who often became their full -time carers. There are cases of partners such as Clair Walton that also became infected through sexual contact. Partners could also be the main wage earner in the family due to a haemophiliac’s health condition thus losing their own careers. In some cases, children conceived became infected too.

There were also families where those infected were advised not to have children. Parents of haemophiliacs watched their children die, children of haemophiliacs were left without a parent or parents.

The Special Status of infected haemophiliacs recognised that haemophiliacs were a “distinct patient group” taking a specific manufactured treatment called factor concentrates as opposed to lots of individual patients with a variety of different health issues requiring whole blood transfusions such as childbirth, accidents, and emergency surgery.

The Special Status of infected haemophiliacs recognized that haemophilia is an hereditary condition, therefore haemophiliacs were ALREADY disadvantaged in many ways, compromised in health, education, insurance, employment and financial. This was made far worse by multiple additional infections with HIV and hepatitis viruses and also being re-infected over and over again before heat treatment was introduced to kill these viruses. In addition, HIV and hepatitis viruses also massively increased prejudice and discrimination in addition to the (then) stigma of haemophilia.

The Special Status recognized that the infected generation of haemophiliacs often went to special schools such as Lord Mayor Treloar boarding school in Hampshire because of missed schooling in the main education system due to bleeds. The school had specialist treatment facilities on site.

The Special Status recognized that in the 70s and 80s many employers were reluctant to employ haemophiliacs especially in jobs where they were deemed to be at risk of increased bleeding such as trades which required the use of heavy machinery or involved a high level of physical activity. Peter Longstaff was informed he could no longer continue in his employment when it was known he was a haemophiliac in case he injured himself at work. In the case of Colette Wintle she was discriminated against and lost her job as a direct result of having a bleeding disorder.

The Special Status recognized the additional difficulties of having FIRSTLY the hereditary condition of haemophilia PLUS HIV and IN ADDITION haemophiliacs were also infected with multiple hepatitis viruses. This impacted on health, life and travel insurance as well as obtaining a mortgage. It was known to lawyers, doctors and government at the time of the HIV litigation in 1991 that 99% of haemophiliacs with HIV were ALSO infected with hepatitis C (known also as non -A, non -B) and many had already been infected with hepatitis B.

The Special Status recognized the impact of multiple family members with bleeding disorders in the same family being infected as follows,

Hansard 27^th Jun 1991

Mr. Ashley : To ask the Secretary of State for Health how many of the haemophiliacs infected with the HIV virus who have received payments from his Department were related.

Mrs. Virginia Bottomley : Among the haemophiliacs infected with HIV, we understand that there are 65 pairs and six trios of brothers who are infected. We believe there may be a significant number of other cases where HIV-infected haemophiliacs are related, for example, grandfathers, grandsons, uncles and nephews, but these cannot be readily identified from the available information. In addition, there are a number of cases where the haemophiliac’s spouse or partner has become infected.

It is noted that this answer did not even include studies on female haemophiliacs, sisters, grandmothers, granddaughters, aunts and nieces, such was the misogyny at that time.

The Special Status was the reason haemophiliacs were awarded an ex-gratia payment in 1991.

Hansard 20^th December 1991 records,

“The Government recognised the arguments forcefully put to us that HIV-infected haemophiliacs were a special case. I repeat that their lifelong condition of haemophilia—which had already adversely affected their health, social, employment, insurance, and mortgage prospects—was further exacerbated by the onset of HIV.”

The criteria of the Special Status of haemophiliacs is equally applied to haemophiliacs infected with hepatitis B and C but who escaped HIV infection.

In fact, had ALL haemophiliacs been told of their infection with hepatitis C in the late 1989 onwards when a test first became available as used in other countries “to err on the side of caution” they could and should have all litigated for the multiple viruses that infected them alongside HIV, together, instead of deliberate and devastating divisions being created.

We remember that in 1989, the late Peter Mossman launched his case for hepatitis C infection at the same time as haemophiliacs were litigating separately for HIV infections. Others like Colette Wintle, a female haemophiliac with hepatitis C also tried for a case but were denied legal aid. These divisions caused enormous distress to all concerned and were completely unnecessary.

Haemophiliacs learnt years later that hepatitis C was actually pleaded behind the scenes in the 1991 HIV litigation though the dangers were not relayed to haemophiliacs at that time. This resulted in an allegedly illegal hepatitis “waiver” having to be signed by litigants not to take a further case for hepatitis C. Due to key evidence being withheld from haemophiliacs, they could not give “informed consent.”

In early 2000s, a legal opinion was sought by infected haemophiliac Peter Longstaff from Matthias Kelly QC then Head of the Bar Association who on reviewing evidence from the 1991 HIV litigation acknowledged that solicitors acting for Peter Longstaff, “did play-down the significance of hepatitis C” saying that it was “no big deal.”

Referring to the re amended statement of claim, Kelly points out,

“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.”

Matt Kelly QC 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.”

As a result of the knowledge Kelly acquired from viewing the incriminating evidence of the 1991 HIV litigation provided to him by Longstaff and Carol Grayson, his wife and now author of this blog, he was able to go on to have a significant role in devising a financial scheme which became Skipton. So anyone who got a Skipton payment can also remember Grayson’s late husband in gratitude for his part in this regard. Though the introduction of Skipton had the effect of the couple not being able to go to court on the hepatitis waiver which was hugely disappointing.

On the website of Essex Chambers, Kelly’s personal page he states, he became quote,

Chairman of the Hepatitis C Working Party established by the Haemophilia Society in September 2001, to devise costed proposals for a financial assistance fund to recognise the loss and suffering of people with haemophilia resulting from their infection with hepatitis C (HCV). Reported March 2002.

This scheme became known as the Skipton Fund.

Back to the Special Status, Charles Gore, founder of the Hepatitis C Trust eloquently described the difference between haemophiliacs and those infected by whole blood transfusions in the following paragraph in “Too Little, Too Late, (Therapy Today, March 2012.)

“Those who received whole blood were at some, but fairly low, risk because each unit would have come from just one donor. So someone like the late Anita Roddick, who had a transfusion following the birth of her youngest daughter in 1971, was unlucky to contract hepatitis C. However those who received blood products, such as clotting factors, were at very high risk because these products were made from the pooled blood of hundreds of donors. It only needed one of those donors to be infected to make the product unsafe. Added to that, whereas whole blood in the UK was collected from volunteer donors, much of the blood used to make blood products was sourced from commercial companies and these were mainly in the US, where donors were paid for blood and were often prisoners or intravenous drug users, among whom hepatitis C was very prevalent. Most at risk were haemophiliacs who required multiple treatments with clotting factor. Almost all – about 5,000 of them – were infected with hepatitis C, and about a quarter were also infected with HIV. Inevitably, many of them died. Could more have been done to prevent this? Certainly the risk of blood sourced from paid donors in the US was recognised at the time; the Secretary of State for Health also promised to make the UK self-sufficient in the blood needed for transfusions and treatments, but this was never implemented. Moreover, it wasn’t just haemophiliacs who received clotting factor or other blood products, and similar numbers were infected by whole blood because more people received blood transfusions, even though the risk was smaller. The haemophilia community was the worst affected group, however, and led the campaign for compensation.”

http://www.bacp.co.uk/docs/pdf/15272_therapy%20today%20march%202012.pdf

The term the “worst treatment disaster in the history of the NHS” (Lord Winston, former Vice President of the Haemophilia Society) refers specifically to the haemophilia community as highlighted in Hansard 12^th March 2002 Column 765.

The expression a “criminal cover-up on an industrial scale” stated by Andy Burnham (former Secretary of State for Health) in 2017 refers to evidence highlighted by long standing haemophilia campaigners specifically about infected haemophiliacs. He acknowledged one particular document, the now infamous 1982 Dr Rizza and Dr Bloom “cheaper than chimps” letter as having been sourced by Grayson, now widow of Longstaff and a multi awarded researcher.

Both statements from Winston and Burnham have often been misused by the media to refer to non -haemophiliacs once again causing great distress to the haemophilia community and apologies are still awaited.

The statement, “we are all in this together” has often been quoted in the media by non -haemophilia campaigners. Whilst the Haemophilia Society and haemophilia campaigners have respect for those infected with HIV and hepatitis through whole blood, we cannot be “all in this together” as the Haemophilia Society only has a legal remit for haemophilia, Von Willebrands Disease and bleeding disorders and those infected haemophiliacs who come under the Special Status. To go beyond this would incur problems with the Charities Commission.

Campaigners hope Sir Brian will understand the limitations of the Society in this regard and make clear and separate recommendations for the haemophilia community in his final report.

Campaigners are also aware that there are a growing number of groups and organisations who now claim to speak for haemophiliacs. Sadly, some have complicated issues by failing to record the history of haemophiliacs accurately with correct timelines and dates of discovery and some of the media have published these wrongful narratives causing further angst to haemophiliacs and their families.

The Haemophilia Society is the official body for haemophiliacs working with long standing campaigners and government should respect this and go directly to the Society and campaigners first for any discussions on compensation and they will respond jointly.

Campaigners are claiming back their haemophilia history which to some extent has been hijacked by others and will ensure that the fight for truth, justice and a correct narrative prevails and is recorded for future generations.

The Special Status of haemophiliacs infected with HIV and hepatitis viruses cannot be altered or changed and is as relevant in 2023 as it was 3 decades ago, it refers to a specific group of infected haemophiliacs, a unique patient group during a specific time period of their collective history and that must be understood.

As Anne Milton said in 2010 during a meeting at Westminster with haemophilia campaigners Carol Grayson and Colette Wintle during discussions on haemophilia compensation, “a unique situation requires a unique solution.”

Finally, campaigners would also like to say that they recognize that the life experience of haemophiliacs today prescribed the safest synthetic treatment known as recombinant is very different from the infected generations of haemophiliacs of the 1970s and 80s and celebrate that progress.

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”.