The forgotten health scandal
Published by The i paper (30th April, 2018)
In the United States they call it ‘the haemophilia holocaust’ after use of tainted blood products wiped out thousands of people with the blood disorder. Companies responsible for creating contaminated products intended to save lives were forced to pay millions of dollars in compensation to survivors infected with fatal diseases and families of the dead. In France, ministers were prosecuted for manslaughter and officials jailed. In Canada and Japan, there have been criminal charges and convictions.
This was also the biggest disaster in the history of our sanctified health service. But in Britain we have seen only decades of foot-dragging by spineless politicians and bureaucrats as they sought to shrug off a catastrophic failure. The statistics are shocking: almost 3000 people left dead and thousands more lives ruined. Yet ministers from governments of all hues, advised by their armies of civil servants, focused on protecting Whitehall’s reputation rather than seeking to discover the cause, lessons and mistakes made in this massacre of innocents.
It is not just a sad tragedy but state failure of grotesque proportions. It dwarfs the Windrush scandal, for all the outcry that fiasco has rightly provoked. Some grudging payments were extracted from government coffers after long battles. Yet only this week, more than three decades after 4,689 haemophiliacs were given HIV and hepatitis C by treatments on the NHS, is there a flicker of fresh hope that families whose lives were wrecked by cost-cutting, cover-up and incompetence might finally see some closure with start of an overdue public inquiry.
This is Britain’s forgotten scandal. Former health secretary Andy Burnham called it ‘perhaps the greatest untold injustice in the history of this country’ in his farewell Westminster speech last year. On Tuesday, high court judge Sir Brian Langstaff takes up his post at helm of this probe. Yet it had to be dragged from a prime minister who twice refused demands for an inquiry before being forced to concede by an all-party revolt – and not even at the dispatch box, but in a cowardly letter. Then the health department tried to grab control of a review into its own egregious failure. Key documents have been destroyed, others gone mysteriously missing.
So many lives blighted, but for so long we have heard little more than empty words. Haemophilia is a genetic condition caused by lack of a key blood-clotting protein, so even small knocks and minor scrapes can cause serious bleeding. Lives of those afflicted were transformed in the 1970s by use of a coagulant made from blood donations taken from thousands of people – but as demand rose, it was harvested from some of the world’s highest-risk donors including Haitian slum-dwellers and Arkansas prisoners paid to give blood twice a week.
Britain was fatally blasé as evidence emerged of lethally-tainted treatments. Politicians insisted there was ‘no conclusive evidence that Aids is transmitted by blood products’ even after haemophiliacs were being diagnosed with the disease in 1983. Sixteen Western countries acted faster than England and Wales to screen for hepatitis C, a horrible condition known as the ‘silent killer’. There is even evidence of patients used as unwitting guinea pigs by doctors aware of the dangers.
Since Theresa May reluctantly accepted demands for this inquiry last July, about 70 more haemophiliacs have gone to their graves. Yet as one campaigner said, this is the same prime minister who spoke out so strongly on state-sponsored poisoning as a reckless and despicable act when carried out against a former Russian spy in Salisbury. ‘Who benefits from this silent scandal,’ this sick man asked. A good question – especially when Ken Clarke was discovered to have written a dismissive internal memo saying ‘only haemophiliacs have died’’ during his time in the health department, highlighting the callousness of official attitudes.
This issue is close to my heart since as a child I had a related blood disorder. I spent days in hospital units beside haemophiliacs; the odds would indicate several must since have died. Over recent years I have talked to some of those devastated in this cruel disaster: Janet and Colin Smith, whose disease-ravaged son died at the age of seven; Robert Mackie, a Scottish pensioner who saw three more family members die from products used to treat their inherited condition; Ade Goodyear, fourth boy in his family born with the disease and one of just 17 survivors from 89 attending a specialist boarding centre in Hampshire four decades ago.
Then there is former teacher , a courteous 61-year-old man who keeps me updated on their unrelenting fight for truth. He has mild haemophilia that left him free to live a good life, even playing rugby – until he bruised his hand in the garden and was erroneously given a contaminated clotting agent. Despite terrible decline that forced his wife to abandon her job to care for him, it took more than a decade before his hepatitis C was diagnosed. ‘I am beyond anger,’ he says. ‘I’m trapped in a cold and dark place that I would not wish on anyone.’
Dymond told me he and his fellow campaigners wonder why Whitehall fiercely resisted an inquiry. ’The fear now is many victims, families and loved ones will finally see to what extent they have been betrayed by people supposed to protect them.’ As he says, any answers will not return the dead, restore their health, replace their lost life opportunities, recover them from poverty. But they could offer dignity and justice to people who suffered so horribly for decades – as well as rebuild faith in a system that failed so many people so shockingly and for so many years.