The Contaminated Blood Scandal
A dark and insidious tale of healthcare negligence, government cover-ups and media stigmatisation of HIV sufferers.
In the UK in the late 1970s and early 1980s thousands of patients, mostly haemophiliacs, were infected with Hepatitis C, HIV or both by treatment known as Factor VIII. First licensed for use in the UK in 1973, Factor VIII was increasingly used to treat haemophilia as it helped blood to clot. These products were made by pooling plasma from as many as 40,000 blood donors. Clotting factors were then taken from the blood plasma, freeze dried into a powder and used as factor concentrates. When Britain was struggling to keep up with demand for this treatment, supplies were imported from the US, where pharmaceutical companies would pay people to give blood, including prison inmates and drug addicts. Screening of blood products did not begin until 1991 and it was only in the mid 1980s that donated blood began to be heat-treated to kill any viruses.
Prior to these screenings, approximately 4,800 people were infected with Hepatitis C, of these 1,200 were also infected with HIV. 3,000 of these individuals have now died as a result. People who had blood transfusions after operations or childbirth were also exposed to contaminated blood and it is thought that around 30,000 people may have been infected in total. These statistics include children and the real numbers are likely even higher.
Whilst these figures are useful in portraying the extent of the scandal, they reduce the people, families and stories of those affected to easily categorised numbers. Having read only a few witness statements and watched the oral evidence of only a few family members of those who have died, from the horrifying stories of suffering to the stigmatisation they received from the public and the press, it is clear that this scandal has more than devastated the lives of thousands of ordinary, undeserving people and left detrimental ramifications still impacting thousands today.
Each of their stories are enough to bring you to tears and make you question how the people infected, as well as their family, friends and partners managed to keep going.
In case you needed to know, Hepatitis C is a virus that infects the liver and if left untreated it can cause life-threatening damage. The Human Immunodeficiency Virus (HIV) targets the immune system and weakens our defence against infections and some types of cancer. If left untreated, HIV severely damages the immune system and leads to Acquired Immune Deficiency Syndrome (AIDS) which encompasses a number of life-threatening infections and illnesses that occur from this damage.
The Government have still not admitted liability and only recently has an inquiry been allowed to investigate the scandal.
It appears that due to the stigma surrounding HIV and AIDS, most members of Parliament in the 70s and 80s did not want to validate this scandal in any way. In 1986, MP John MacKay, then Parliamentary Under-Secretary of State for Scotland, told Parliament, ‘AIDS is a totally self-inflicted illness … It is a moral question, which comes down to people reviewing their living habits.’ The next year, MP Eric Forth also stated that AIDS is ‘largely self-inflicted’. Either the stigma against HIV was so strong that people were not willing to believe it could have been caught by NHS administered products or this was used as an excuse to divert attention and blame, making others believe these patients had particular ‘living habits’ that led them to be infected, an easy feat in the 80s.
Other MPs completely denied the scandal to avoid any responsibility. In 1989, Roger Freeman, Parliamentary Under-Secretary of State for Health said ‘We strongly believe that there was no negligence on the part of the Department of Health … we categorically deny any negligence’. At this point, 1,200 haemophiliacs had tested HIV positive as a result of the infected blood products, making this denial a mockery. Whilst MPs did come forward in Parliament urging for an investigation and requesting the Prime Minister look into the cases, they were largely ignored or shut down. By 1990, there were known to be 35 spouses of haemophiliacs who were infected with HIV, as well as some infected children born.
Cover-ups began to appear more obvious when Parliamentary figures denied blame but continued to refuse access to key documents. Harriet Harman, Labour’s health spokeswoman in 1990, claimed the Government were concerned official papers would show that ministers had ‘knowingly put lives at risk in order to penny-pinch on the NHS’. In 2005, Sir Nigel Crisp, Senior Civil Service, stated ‘a number of files were marked for destruction in the 1990s. Clearly this should not have happened.’ In 2006, documents relating to the involvement of pharmaceutical companies in the contamination scandal that had been gathered for a documentary were destroyed in a fire in the Iron Mountain Data storage facility.
In 2016, campaigner Jason Evans made a request to University Hospital Coventry and Warwickshire NHS Trust for his father’s medical records, who had died in 1993 after being infected with HIV and Hepatitis C through Factor VIII. For over a year the Trust denied that Jason’s father was ever a patient there and that the records he was looking for did not exist. In 2017, the BBC contacted the Trust and the records were found within days. It gets worse, the BBC, not the Trust, were the ones to inform Jason that the records had been found. Once asked why they did not locate the records before the BBC’s involvement, the Trust struggled to get their story straight, first stating that a haematologist had suddenly remembered something and later denying this, stating instead they were found in storage. Jason is the founder of Factor 8, a campaign started to get justice for families affected by the scandal.
Former Health Secretary Andy Burnham has dubbed the scandal a ‘criminal cover-up on an industrial scale’. In his last speech in the Commons in 2017, Burnham cited evidence of cover-ups, such as the case of haemophiliac Ken Bullock who was infected with Hepatitis C and died in 1998. His wife said that unbeknownst to the couple, Ken’s medical notes had been changed to label him as a ‘clinical alcoholic’ and that he was possibly refused a liver transplant based on this.
After countless MPs and organisations and campaigns like Factor 8 demanded a formal investigation, in July 2017, then Prime Minister Theresa May finally allowed a public inquiry to be initiated.
The Inquiry began in May 2019 and are due to report all of their findings next year. Here are some of their findings so far.
The first known person in the UK with haemophilia who received this treatment, tested HIV positive and died of AIDS was Kevin Slater. In Wales in 1983, at the age of 20, Kevin developed AIDS but was not informed that he had been diagnosed with the condition for 18 months, he died shortly afterwards in 1985 at 22. Records show that it was recommended his diagnosis be kept from him and the Infected Blood Inquiry heard that neither Kevin nor his family were told that the doctors suspected the virus had advanced to AIDS until after his death. Why the doctors decided to cover this information up remains unclear. Three years later, Kevin’s brother Paul who was also a haemophiliac treated with Factor VIII was diagnosed with AIDS, he too tragically died at the young age of 30 in 1998.
Recently, the Inquiry was shown documents and notes indicating that Professor Arthur Bloom, the consultant at Cardiff Haemophilia Centre at the time, knew Kevin had ‘mild possible AIDS’ but this needed to be kept ‘in perspective’. Bloom was also quoted as saying there was ‘no justification’ to ban the blood products being used. Lynda Maule, Paul’s wife and Kevin’s sister-in-law, stated ‘Information was withheld. Tests were being done without Kevin’s knowledge. Without even speaking to his parents, letting them know what they suspected or thought.’ Whilst we now know significantly more about HIV, AIDS and Hepatitis C, this does not mean that healthcare providers of the 80s were not aware of the severity and dangerousness of the viruses and their lack of transparency with patients and families should not be overlooked.
Similar cover-ups have been found to have occurred in Scotland. By 1983, it was known to doctors in Scotland that 10 haemophiliac patients in the United States had contracted AIDS, the youngest was seven years old, and these cases were linked to Factor VIII. Scottish patients at the time were also being treated with Factor VIII but these particular products were produced with blood that had been donated locally. The Inquiry heard from Professor Christopher Ludlam, a consultant haematologist at the time, that no cases of AIDS had been reported in Scotland, so he thought the risk was small, but not zero. In 1984, he sent samples from patients to be checked for HIV, without informing them, and sixteen came back positive. Ludlam then failed to let patients know of this discovery for almost two months. A reporter from the Yorkshire Post had contacted Ludlam to report on the story, having found out before the patients themselves. The consultant eventually invited the patients to a meeting, as the story was inevitably going to come out, and told them about the test results, leaving it to them to ask if they wanted further information. Within this time, these sixteen patients could have inadvertently passed the virus on to others.
The Cornes’ family losses are particularly heartbreaking, with six of seven brothers’ lives permanently altered by contaminated Factor VIII products. Three of the Cornes brothers died from contracting HIV and Hepatitis C through the tainted blood treatments. Between 1992–1995, brothers Garry, Roy and Gordon who were all in their twenties passed away, as well as Garry’s wife Lee whom he passed the virus on to, leaving their son an orphan. Roy also unknowingly passed HIV on to a woman who then died before he did. After losing her sons, their mother passed away from a heart attack shortly after Gordon. Of the seven, three were infected with HIV and three with Hepatitis C, the remaining brother was not a haemophiliac and therefore did not come into contact with the contaminated treatment. Alan Cornes, who had been infected with Hepatitis C, died of a brain haemorrhage in 2017, which his family believe was due to the stress of his illness as well as the deaths of his brothers and mother.
John Cornes, one of the surviving brothers infected with Hepatitis C, details in his oral evidence that after the press found out about Roy passing HIV on to a woman they ‘came down on the family’ and ‘ripped the family apart mentally’. The Cornes family became known as ‘scum bags’ in Birmingham, people graffitied and threw stones at Roy’s grave and photographers hid in bushes to get pictures of the family at funerals. John explains how he came forward to ‘represent not just the infected but also the affected’, having numerous nephews and nieces without a father or a mother. John himself still suffers the repercussions of being infected with Hepatitis C and has had multiple stints in hospital.
Graham Binks gave a written statement to the Inquiry about the death of his wife Margaret Binks, who passed away at the age of 43 in 1980 from a Hepatitis C infection, potentially as a result of blood transfusions following the birth of her sons. Margaret was in good health when she gave birth in 1972 and 1974 in Leeds, but following the birth of her second son her health deteriorated drastically and she suffered greatly. Graham informed the Inquiry that, ‘No proposition was put forward or theory advanced as to how my wife might have contracted the disease.’ It is likely that Margaret was infected with Hepatitis C during the blood transfusion she received after giving birth to her second son, as she was otherwise in good health prior to this.
Jo-Anne Cohrs, wife of Keith Proud who was infected with Hepatitis B, C and HIV, tells the tear-jerking story of how her husband died from a cerebrovascular accident and AIDS. From the mid 1970s to the mid 1980s, Jo-Anne says Keith was treated with Factor VIII. In 1984, Keith came down with pneumonia and the couple contacted Addenbrookes Hospital to get him tested for HIV, after seeing it reported in the media. In January of 1985 they received a letter in the post with ‘AIDS — Don’t Die of Ignorance’ stamped on the front of the envelope, informing Keith he had tested positive. Jo-Anne recalls seeing papers on a Doctor’s desk that showed Keith had ‘non-A non-B’ hepatitis but thought that if it was something concerning, the doctors would have spoken to them about it. In the years leading up to his death, Keith suffered from infections, pneumonia, cognitive loss and vomiting blood. In 1987, Keith fell over the threshold of the back door and hit his head, Jo-Anne called an ambulance which took Keith to the hospital. Within half an hour, they had brought him back home in a wheelchair, having only applied antiseptic spray to the wound on his head. It is fair to assume this hurried, neglectful care was due to his HIV diagnosis. Jo-Anne and her mother put Keith to bed, who fell into a coma and did not wake up again, dying 6 March 1987 at 37.
The local health authority directed Jo-Anne to put any medical waste into ‘very luminous yellow plastic bags’ and leave them outside of her house, they neglected to pick these bags up for three weeks. Jo-Anne describes it as ‘so stigmatising and so uncaring’ and recalls local newspapers making innuendos about the local man who died of AIDS and questioning the lifestyle he must have led.
From those who have tragically died and the loved ones they’ve left behind to those who are still suffering with damage to their health, every affected life deserves compensation and an apology and even that does not feel like enough. Whilst perhaps ignorance can be used as an excuse to some extent, there are serious examples of purposeful, insidious cover ups and a lack of care. As many impacted families explain, they cannot complain about the majority of the care they received from doctors and nurses and these extraordinary cases are thankfully representative of only a select few and indicate cover-ups on a higher level. Nevertheless, those responsible need to be held account and the families who have been seeking justice for forty years could not be more deserving of it.
As Jackie Britton, who was infected with Hepatitis C during a blood transfusion after the birth of her first child in 1983, has stated, ‘We’re dead men walking. We haven’t got the time any longer to hang around.’
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