They gave Robert Aids – and then they killed his relatives
Published by The Mail on Sunday (22nd March, 2015)
In 1983, Robert Mackie asked his doctor about reports of haemophiliacs developing a mysterious new disease called AIDS that was killing its victims within a couple of years.
They told him not to worry. So the coachbuilder returned to his wife and carried on with his life of sport and salmon fishing as before, interspersed with bouts of treatment for his haemophilia.
Little did he know it but Mackie had already been given hepatitis C from contaminated blood products. Then in March the following year, he was infected with HIV – and, in an instant, his life was devastated.
Later, the lethal virus advanced into full-blown AIDS. He had to give up work – as did his wife, Alice, to care for him. His condition worsened and he could barely climb stairs; they were fortunate their son was born healthy.
Yet Mackie, 64, is just one of thousands whose lives were wrecked by products designed to treat their inherited condition by helping blood clot. The roll call of deaths include two of his uncles, a cousin, and several close friends in the Scottish haemophilia community.
No wonder he is angry, like others I have spoken to while investigating this shocking saga for The Mail on Sunday.
Not just with the incompetence and coverups, but with the lack of a national public inquiry, prosecutions or public apology – and piecemeal compensation payments.
What makes it even worse in Mackie’s case is that he was part of a group of Edinburgh haemophiliacs whose medical records indicate they were used to study AIDS from the year before he was infected.
Clearly, they were being used as guinea pigs. There was medical knowledge of the risks they faced – yet the patients were not asked for consent or given warnings over their treatments. ‘I find this absolutely outrageous,’ he told me.
I first came across this story five years ago, stunned both by the scale of the scandal and the seeming lack of concern towards people failed so terribly and so tragically by the health system.
It struck home since I have a closely-related blood disorder, spending many childhood days in hospital haematology units alongside young haemophiliacs. Sadly, I suspect scores of them are now dead.
Among those I have talked to are Janet and Colin Smith, who saw their son, also called Colin, die at the age of seven weighing just 13 pounds. And Melanie McKay, told aged 14 that she had been given HIV seven years earlier, dashing her dreams of becoming a paediatric nurse.
Britain was shamefully slow to react to rising concerns over tainted blood supplies as the dangers emerged in the early 1980s.
Calls to ban dangerous imported products were made as early as May 1983, with the first British haemophiliac reported to have AIDS that August – yet patients were still being infected with HIV from blood products two years later.
Some 1,500 ended up with the virus, many suffering in silence to avoid the acute stigma people faced at the time.
Then at least 16 Western countries acted faster to screen for hepatitis C after it was finally isolated in 1988. It was known from at least a decade earlier that such viruses were in the donor pool.
Haemophiliacs were hit hard since they rely on coagulants made from blood plasma to combat a rare genetic condition that means their own blood does not clot properly.
They were treated with Factor VIII, based on pooled donations from thousands of people. It later emerged these included some of the highest-risk donors imaginable such as drug addicts, prostitutes and Haitian slum dwellers.
One Canadian company was even discovered to have relabelled blood extracted from Russian corpses as coming from Scandinavian donors.
In Britain, the use of paid donors is banned since it attracts people desperate for money. Yet incredibly, imports were permitted of Factor VIII using blood taken from American prisoners paid to give blood.
Even when safer heat-treated products became available, it was left up to doctors to decide whether to use them – and many opted to use up old supplies first.
Meanwhile, haemophiliacs given hepatitis were routinely accused of being alcoholics, such was the severity of damage to their livers.
As the scandal seeped into the open, it emerged that key Government documents had been shredded, supposedly in error by a junior official.
One Whitehall circular quoted a Minister saying ‘only haemophiliacs have died’. A leaked health department memo said that while saving their lives was ‘expensive’ there was a ‘strong cost benefit’ since ‘those already doomed will generate savings which more than cover the cost of testing blood donations’.
Britain was not the only nation hit by a tainted blood scandal. But in France, Canada and Japan, there have been prosecutions and convictions of bungling officials, while in Ireland, people given hepatitis C were awarded payouts averaging £750,000.
What a contrast with Britain – to the justified fury of haemophiliacs such as Steve Gorman, a skilled linguist forced by hepatitis to abandon his teaching career.
‘No one has ever made an official apology or admission of responsibility,’ said Gorman, from Broadstairs, Kent. ‘This makes us all so angry.’
At least this looks set to change finally. This is an episode that has, after all, destroyed the lives of many more people than even the mid-Staffordshire hospital scandal.
Yet as Simon di Rollo, the senior counsel for patients and relatives, said in his summing up to Lord Penrose: ‘Why is it so hard for institutions like the NHS and Government departments responsible for its administration to admit publicly mistakes and misjudgments?’
A very good question. Especially when so many of these unfortunate people have suffered bloody hell for so long thanks to the shocking failures of the services meant to help them.