Colin Smith was the freckle-faced blond-haired baby of a family of four boys. His favourite things were sitting on his father’s lap pretending to steer the car, and splashing around in a paddling pool in the front room.
When he was seven, in 1990, Colin Smith died of Aids. His body had been ravaged by the virus for five years and he weighed less than a four-month-old, often too weak to lift his own head and limbs.
He had been diagnosed with severe haemophilia, a rare blood disorder, as a baby and his parents were convinced to transfer his care from the Royal Gwent Hospital, near their home in Newport, South Wales, to Heath Hospital in Cardiff, under the care of Professor Arthur Bloom.
It was a decision they would bitterly regret. Their son became part of a generation of haemophiliac children almost wiped out after NHS doctors used them as guinea pigs in medical experiments and trials. They were given contaminated blood products riddled with deadly diseases without their knowledge or consent.
Senior doctors working in British hospitals and medical centres had been warned that the infected products — factor VIII — were dangerous but deliberately administered the experimental treatments on “virgin haemophiliacs” to test whether they were safe. The practice is expected to be confirmed by a public inquiry due to report within weeks.
Advertisement
Yet none of the parents, who were forced to watch their children die in horrible suffering, having often lost jobs, friends and their own mental health because of the then-stigma of Aids, have received a penny in compensation from the state.
Time for justice
For almost 40 years, The Sunday Times has been a leading voice for justice for the victims of the scandal. Today it is launching a campaign for a full and fair settlement for the victims of the scandal without delay upon the conclusion of the inquiry.
The call has been backed by more than 180 MPs and leading politicians, including the leaders of six political parties, Sadiq Khan, the mayor of London, Andy Burnham, the mayor of Greater Manchester, and Tracy Brabin, the mayor of West Yorkshire.
Boris Johnson, the former prime minister, is also backing the campaign, saying that “justice delayed is justice denied”.
The campaign, which is also being backed by charities, including the Terrence Higgins Trust and the Haemophilia Society, comes as the government seeks to overturn an amendment tabled by the Labour MP Dame Diana Johnson requiring ministers to set up a compensation body within three months of the Victims and Prisoners Bill becoming law.
Advertisement
Rishi Sunak suffered his first Commons defeat in December after Johnson won support from 22 Tory rebels. His government wants remove any timeframe for the body to be set up from the legislation, when it reaches the Lords this month.
Johnson said: “After six years of evidence, it’s increasingly likely that Sir Brian Langstaff may conclude that the disaster was turned into a major national scandal due to a culture of secrecy and cover-up over decades. But if he also concludes that children and adults were experimented on and infected without their knowledge or informed consent, this would exceed our worst expectations.
“Despite the government accepting the ‘moral case’ for compensation and having had Sir Brian’s final recommendations on compensation since April 2023, backed up by a Commons vote last December, victims are still waiting for ministers to act. With an average of two of those infected dying every week, this important and timely Sunday Times campaign is vital in pressing the government to do the right thing and pay fair compensation now.”
The call has been backed by Tainted Blood, the biggest campaign group representing the victims of the scandal.
Nobody held to account
Colin was ten months old when he received factor VIII. He was treated personally by Bloom, one of Britain’s leading haematologists and an architect of the secret clinical trials conducted on haemophiliacs.
Advertisement
Medical records released to the public inquiry show he approved factor VIII for Colin in July 1983 — a month after he and other haemophilia centre directors in the UK had agreed that children should not receive it because of the Aids risk.
Speaking this weekend from her home in Newport, Colin’s mother, Jan, said: “When we found out little Colin was going to be treated by a world-renowned haematologist we were over the moon. Professor Bloom was like a God to us and we didn’t question him. We thought our son was being given the best possible treatment. But we will feel forever guilty that we had in fact handed our son over to his killer.”
Colin was one of the youngest victims of the contaminated blood scandal but he was far from alone.
In the 1970s and 1980s, about 1,250 people were infected with HIV after receiving contaminated blood products. This included 380 children. As well as the haemophiliacs, the infected blood inquiry has examined how 30,000 other patients were exposed through blood transfusions. In total, more than 3,000 have died.
Campaigners hope the inquiry’s final report will give them answers — and finally push the government to deliver a fair compensation scheme.
Advertisement
Despite the scandal being the deadliest man-made disaster in postwar British history, no organisation or individual has been held to account. A patchwork system of payouts has failed to compensate for the lives lost or destroyed.
While other countries grappling with the same horrors made attempts to rectify the wrongs wrought on their citizens, Britain chose a different path. Successive governments under 11 prime ministers have kicked the can down the road.
Why five decades have passed without justice is difficult to answer. One possible explanation is the presence of the NHS at the heart of this scandal. The institution, a totemic part of British life, is the largest publicly funded health service in the world. There would have been calamitous financial liabilities for the British state.
There is also the secretive nature of the state which, as in the Post Office scandal, has allowed those in authority to use their power to protect themselves, or their institution.
Whatever the cause, the effect is clear. The death rate among the victims of this scandal, the worst treatment disaster in NHS history, has started to accelerate.
Advertisement
Between July 2017, when the public inquiry was announced, and January this year, there were 680 such deaths. Every 3½ days the death toll goes up by one.
An interim report from the inquiry, chaired by the retired High Court judge Sir Brian Langstaff, concluded more than a year ago that the government had a “moral obligation” to properly compensate those who were infected, as well as the bereaved, parents, partners, children, siblings, and in some cases carers, of those who have died. Yet still nothing has happened.
Wonder cure tainted
At the heart of the blood scandal are those victims suffering from haemophilia, a genetic condition that causes a lack of the essential clotting protein known as factor VIII. Even a small injury can result in life-threatening loss of blood.
Before the 1960s, sufferers could be treated only with whole blood or fresh plasma, which did not contain enough of the protein to stop severe bleeding. A frozen blood product called cryoprecipitate was heralded as a wonder cure, but could only be administered via transfusion in hospital.
The game-changer came in the 1970s with a breakthrough in the mass production of freeze-dried factor concentrates, distilling the plasma of large groups of donors. Factor VIII had ten times the clotting power of cryoprecipitate and could be easily administered at home.
But demand far outstripped supply, and by 1973 much of the product ended up being bought cheaply from the US, which operated a dangerously deregulated donation system. Donors were paid, attracting those who badly needed cash. Blood from high-risk groups — prisoners, sex workers, drug addicts and alcoholics — was packaged up and sold around the world.
As early as May 1975, the World Health Organisation (WHO) expressed “serious concern” at the international plasma trade. It would become one of the first of many warnings to be ignored.
Much of the blood sold to British hospitals came from high-security prisons in Arkansas, where many inmates were infected with hepatitis and later HIV. The donations were also pooled, meaning a single batch of factor VIII could include blood from up to 60,000 donors. If one was infected, the entire batch could be contaminated.
J Garrott Allen, a US-based world-renowned hepatitis expert, wrote to the head of the British Blood Transfusion Service outlining the serious risks of “Britain purchasing commercial blood products from our country”. His message was ignored.
One UK minister appeared to understand the significance of the emerging health crisis. David Owen, the Labour health minister serving under Harold Wilson’s government, promised Britain would become self-sufficient in blood products.
Owen, a doctor before he was elected MP, announced plans to invest £500,000 for increasing production at Blood Products Laboratory, then state-owned, which oversaw the manufacture of human blood plasma products in the UK.
However, when Owen moved in 1976 to the Foreign Office, the policy was quietly ditched. Owen discovered more than a decade later that his ministerial papers relating to his time as health minister had been shredded, adding to fears of a cover-up. The decision undoubtedly cost lives and failed to stop what would become an even bigger tragedy when a new killer virus ripped across the world.
Backing the Sunday Times campaign today, Owen said: “As so often self-sufficiency, in this case in blood, has proved the best course of action which I started as minister of health but was abandoned. Now we must pay generously to compensate the tragic loss of many loved ones.”
Advice may have saved thousands
By 1983 government experts knew those receiving factor VIII were at risk of Aids. That May, Dr Spence Galbraith, the director of the Communicable Disease Surveillance Centre, said imported US blood products should be withdrawn following the discovery of 14 cases of haemophiliacs contracting Aids after receiving factor VIII.
Weeks later, he gave evidence to the Committee on Safety of Medicines (CSM), where his advice was considered but ultimately rejected.
Six months later, Kenneth Clarke, then a junior health minister, told the Commons: “There is no conclusive evidence that Aids is transmitted by blood products.”
Clarke has since admitted to the inquiry that had he seen the letter from Galbraith he would have “saved thousands of lives”. He described it as “pretty startling”, adding he was “amazed to read a document which is so perspicacious”.
The same month Galbraith’s recommendations were rejected in Whitehall, the US Food and Drug Administration (FDA) introduced tighter restrictions on blood donors with the aim of reducing the possibility of Aids transmission. This included the approval of new heat-treated products to kill infection causing viruses.
It meant pharmaceutical companies began dumping surplus contaminated concentrate in the UK.
Bloom recommended imported factor VIII meet the new FDA standards but there were already large stocks of potentially fatal factor VIII in the UK ready to be distributed.
Britain quickly tried to play catch-up by beginning the process of getting new heat-treated products approved — but this was delayed yet again, this time by pharmaceutical companies that argued further clinical trials were needed first.
Documents from the Department of Health and Social Security show that in June 1983 haemophilia directors concluded that any “meaningful trial” of heat-treated products could only be conducted in patients who had not previously been treated with factor VIII, including newly diagnosed or mild haemophiliacs.
Yet evidence shared with the public inquiry shows doctors were carrying out trials and administering experimental drugs on haemophiliacs without their knowledge or consent from the early 1970s.
In January 1982, Bloom wrote a letter that confirmed haemophiliacs were being put at risk of being infected with hepatitis, as the previous trial subjects — in this case, chimpanzees — were no longer sufficient to guarantee the “quality control” demanded by factor VIII manufacturers. “This study shows that it is possible to demonstrate infectivity effectively using quite small numbers of Pups [previously untreated patients],” he wrote.
Separate correspondence has also been unearthed that shows health chiefs were keen to conduct “infectivity trials” on patients rather than chimpanzees. Officials calculated it would cost £10,000 to conduct the trial on the animals for six months — a cost that they would not have to bear if humans were used.
Campaigners believe doctors making these decisions broke the Nuremberg Code, which governs the research ethics for human experimentation and forbids medical experimentation on humans without their consent.
Why this breach of medical ethics happened is difficult to say. It was still believed among some doctors that haemophilia itself — and the risk of a fatal head bleed — was more dangerous than a deadly virus, given that before the advance in treatment the life expectancy of haemophiliacs was not much more than 40.
However, evidence to the public inquiry also indicates Bloom had a commercial relationship with the pharmaceutical companies manufacturing factor VIII.
Documents show he was in close contact with firms that lobbied him to buy their dangerous products for use in the UK. In one letter to the American blood plasma firm Speywood, he thanked the company for “their most generous help” in “assisting” a congress in Tel Aviv. In another, Speywood admitted to funding factor VIII research at Bloom’s Cardiff centre. The firm also briefed another UK doctor that the latest batch was “developed in consultation with … Bloom”.
Bloom was also offered a “research fellowship” by Armour, another pharmaceutical company.
Bloom, who died in 1992, has fallen into disgrace. University Hospital Wales in Cardiff removed his bust shortly after Colin’s parents gave evidence to the inquiry in July 2019. Cardiff and Vale University Health Board said it could not comment until the inquiry report was published but offered “sincere and heartfelt condolences” to those affected and the board would continue to offer psychological and bereavement support to patients.
‘We were used as lab rats’
Treloar School in Alton, Hampshire, one of England’s leading centres in caring for disabled youngsters, was at the centre of the clinical trials. An entire chapter in the inquiry’s final 1,200-page report is expected to be dedicated to the activities at the school.
Doctors working closely with pharmaceutical companies ran secret medical experiments on scores of children who attended the school without the knowledge of them or their families.
Documents show an almost constant round of clinical trials began at Treloar as early as 1972 and continued well into the next decade.
The inquiry was shown a document that said Dr Antony Aronstam, director of the haemophilia centre at Treloar, “emphasised the necessity for research as the concentration of haemophiliacs found at Treloar is unique within Britain”.
Many pupils died before they reached their 30th birthdays, killed by diseases including HIV and hepatitis C transmitted by the blood products that were supposed to save them.
Of the 122 boys with haemophilia who attended in the decade after 1975 only 30 are still alive.
Nick Sainsbury, who was infected with HIV, hepatitis B and C there was one of the last to die in April last year. He was 59. Gary Webster, Steve Nicholls, Ade Goodyear and Richard Warwick are among the survivors.
They said: “Haemophiliac boys as young as eight years old were recruited to Treloar for medical research purposes. Not only into the progressive treatments of haemophilia, but predominantly for research into blood-borne viruses and infections, such as hepatitis and HIV. Infected commercial products were knowingly used on children within Treloar when safer products and alternative treatments were available.
“We are outraged. We were children being used as lab rats.”
A spokeswoman for Treloar said: “We are truly saddened that many of our former pupils were infected with hepatitis and/or HIV from infected blood products supplied within the NHS treatment programme. We support their calls for the government to accelerate compensation payments. The school and its staff trusted and followed what was said by the Department of Health, the NHS and NHS specialists in the field. With hindsight, we sincerely wish that things could have been different.
“During the course of the inquiry, former students and their parents stated that they did not feel that they were given sufficient information by those in charge of their treatment. Obtaining consent to medical treatment is a process between the treating doctor and their patient.”
‘Infectivity experiment’
Unlike many of the pupils at Treloar, Mike Dorricott was a mild haemophilic. As a child he had only been treated once or twice for his condition with cryoprecipitate.
However, in December 1982, when Mike was 15, he was booked in for surgery at Huddersfield Royal Infirmary to have four wisdom teeth removed after they had become impacted. The routine operation was meticulously arranged in co-ordination with one of the hospital’s consultant haematologists, who had been put on standby to administer the cryoprecipitate.
Instead of receiving cryoprecipitate to help his blood clot, Mike was given factor VIII.
The operation took place just months after Bloom’s “cheaper than chimps” letter, in which he proposed using Pups to test the “infectivity” of factor VIII blood products.
After being diagnosed with hepatitis C — more than a decade after being infected — Mike began to investigate. He and his family eventually became convinced that he was a Pup after they found a document that referenced it on the Tainted Blood website.
He died in 2015 from liver cancer linked to the hepatitis C. He was 47 and left behind his wife Ann, and daughters, Sarah and Eleanor.
Rosemary Calder’s son Nicky, a severe haemophiliac, was first treated with factor VIII in the late 1970s when he was three. Doctors had convinced his parents the new treatment was safer than more conventional treatment. When he was 11, a letter arrived confirming that he had tested positive for HIV.
Calder, who chairs the Tainted Blood Bereaved Parent Support Group, said: “As a parent you will do everything within your power to protect and care for your child. We placed our trust in the medical profession in the belief that our children were receiving the best care possible, while, unknown to us, many of them were being used for medical research.
“Young children, mild haemophiliacs and Pups used as guinea pigs, being treated, often unnecessarily, with blood products that were knowingly infected with life threatening viruses, by the very people who were meant to have their wellbeing at heart. No consent was sought from parents, and we were kept totally in the dark about any risks involved with the treatment, and the research taking place. What parent would consent to their child receiving treatment that is a potential death sentence, as in too many cases, it was.
“Now, from evidence heard at the infected blood inquiry, parents know, without a doubt, the full extent of how our children were used to further the research, and the impact it would have on them was given no consideration by those responsible.”
Christmas at Colin’s grave
Whatever the public inquiry concludes next month, many survivors and relatives of the victims of the scandal know they will never achieve closure.
Colin Smith’s parents still talk about their son in the present tense and have spent more than 30 Christmas mornings at his graveside. His father, Colin, spent a lot of time sitting there, at times suicidal, immediately after his death. He had lost his job when his employer discovered what his son’s illness was. The job centre told him he was unemployable. His marriage almost collapsed. His family had been shunned and forced to move after being dubbed the “Aids family”.
Those four letters were scratched on their door and daubed on the side of their house.
Colin’s father said he could never forgive himself for his boy dying before he did, buried in a “grave on his own”.
He told the inquiry: “We should be living our lives now, but we will never really be able to until we are given the full truth. I am not willing to have gone through all of this and be told that they did nothing wrong.”
A government spokesman said: “This was an appalling tragedy, and our thoughts remain with all those impacted. We are clear that justice needs to be delivered for the victims and have already accepted the moral case for compensation.
“This covers a set of extremely complex issues, and it is right we fully consider the needs of the community and the far-reaching impact that this scandal has had on their lives. The government will provide an update to parliament on next steps through an oral statement within 25 sitting days of the inquiry’s final report being published.”
The revised and updated paperback edition of Death in the Blood by Caroline Wheeler is published by Headline on May 9, priced £12.99
