How I broke the blood scandal
A public inquiry will today publish its final report into the deadliest man-made disaster in NHS history. For SUE DOUGLAS, it will mark the end of a 41-year crusade...
NO STORY should start at the end. But this one does. Today, at Westminster’s Central Hall, it will all be over. The public inquiry into why hospitals were using contaminated blood throughout the 1980s, killing thousands of people and infecting tens of thousands of others, will publish its final report.
It is set to put an end to decades of speculation about what compensation victims and their families will receive, after one of the longest, most harrowing medical scandals of all time.
Sir Brian Langstaff’s careful four-year stewardship of the Infected Blood Inquiry has examined millions of pieces of evidence, pored over more than 3,500 written statements and listened to 370 witnesses — including me.
It has operated against a background of almost unbearable testimony: in the mid-late 1980s, at the peak of the scandal, contaminated blood and blood products were killing one person every four days, making it the deadliest man-made disaster in British post-war history.
Some 30,000 people received infected blood, and at least 3,000 died. These deaths were largely from liver disease after contracting the hepatitis C virus, or from Aids caused by HIV.
One anonymous witness to the inquiry told how she was infected with HIV while still in the womb, after her pregnant mother received a blood transfusion.
Parents saw their children die in agony and some children lost one or both parents.
Countless others still live today under a sword of Damocles, not knowing whether they, too, could suddenly receive word from their doctors that their livers are showing signs of fatal illness.
Indeed, just last week it was revealed that some 1,750 people who were infected with hepatitis C after being given a contaminated transfusion, still do not know they have been affected because the Government has never traced them.
Through the process of this inquiry, so many victims have had to endure the obfuscations of politicians and the medical establishment, attempted justifications by civil servants and administrators, and overly complex testimonies from doctors.
There have been headlines, TV and radio documentaries, Facebook groups, books and social media storms. And now it will all stop: the end. I have thought much about what I might write as my own sort of finale to this scandal.
For me, the course of events that came to mark this seismic catastrophe is personal. It began 41 years ago when, as a young medical journalist, newly promoted on to The Mail on Sunday, I broke the story of Britain’s contaminated blood catastrophe.
Much of what follows formed the basis of my own testimony to the inquiry. But, as this tragic saga unfolded, as the deaths continued to mount, I became ever more convinced that, at the heart of this scandal, was not a terrible medical mistake, but a far wider disease of human nature. The infected blood scandal is about greed and money — blood money.
IT is spring 1983, I am 26 and a reporter on the Daily Mail. I am then promoted to Medical Correspondent on the Mail’s newly launched sister paper, The Mail on Sunday, because of my biochemistry degree, my fascination with science and experience of working on a doctors’ magazine.
Over drinks one night, my best friend, Lorraine Fraser, who still worked on the magazine, told me about a conference she’d attended where some scientists raised concerns about a highly-contagious new disease called Aids.
Drug users and homosexual men seemed worst affected. Early studies pointed to transmission occurring via one infection route: blood.
Back then the UK was not selfsufficient with blood supplies. We purchased much of the 1.6 million pints we required every year from outside sources.
We bought in blood products, too — including a blood clotting protein called factor VIII which is vital for treating those with haemophilia, an inherited condition caused by low levels of factor VIII.
Without supplemented doses of factor VIII, even the simplest injury could cause excessive bleeding in haemophiliacs, possibly to death. With it, they can live normal lives.
Lorraine explained that half of the factor VIII needed to treat British patients was bought, cheaply, from an American company. They paid blood donors, often prison inmates, drug addicts or the homeless. Such donors had a higher than normal incidence of blood-transmitted infections such as hepatitis C and HIV, the virus that causes Aids.
One haematologist at that conference had raised a terrifying possibility: What if we are giving infected blood for routine transfusions and blood products here?
I learned that others were beginning to share similar concerns, with tentative suggestions in medical journals and some cautiously worded press reports, but they were making no impact.
In nearly every case, the potential risks were denied by the health authorities. I knew I was on to something big and somehow we had to stop this.
Just a few days later I was sitting in an office in a large teaching hospital in Wales, drinking coffee with the man who was to become my whistleblower. He was scared.
To secure the meeting, I’d been vague about who I was and my agenda: I didn’t want to frighten him off.
Using hastily gathered facts from medical contacts in Oxford, I tried to persuade him that he needed to draw attention to the seemingly unthinkable, but deadly, possibility that British patients were receiving contaminated blood and blood products.
‘We can’t tell anyone, they’re already all denying it,’ he told me. ‘But it is real. One of my friends is a doctor in London and he has two patients likely to die of Aids because of the blood products he gave them. Perhaps you should talk to him?’ We parted and promised to keep in touch.
Back at the office, the news editor called a meeting with The Mail on Sunday editor, Stewart Steven, our senior legal team and two other experienced reporters.
Quickly, we gathered a raft of damning evidence — off-therecord confirmations from politicians, scientists and researchers who raised ‘worrying concerns’ about our imported supplies.
Then I got, on the record, the Swiss Red Cross suggesting they would be prepared to supply the NHS with heat-treated blood that was free of hepatitis C or HIV. But that immediate solution would cost the Government more than the blood imported from the U.S.
My next concern was my whistleblower. I called him and read the story we were intending to print.
He was silent for a few minutes. Then he said: ‘I trust you, and I will help you, but we must never meet again. People here saw us together. Any breath of my involvement will put me in real danger. At best I’ll lose my job.’
Little did I know that within two weeks of my story being published on May 1, 1983 — with the front page headline: Hospitals using killer blood — I would also face the prospect of losing my job.
The then media watchdog, the Press Council, had received complaints from some doctors who accused me of putting lives at risk by alerting patients to what they saw as alarming concerns with no foundation. But, ever-resilient against bullying and threats, The Mail on Sunday and the Daily Mail continued their reports.
More cautious reactions in the rest of the UK press followed — a direct result of the continued barrage of Press Council warnings and experts accusing us of scaremongering.
The rest of the world faced similar pressure. Suppliers of blood products were ‘solving’ the problem — if it was even acknowledged — with new heat-treated products. But the new safer supplies were more expensive and, before they could be used on patients, licence agreements took several years to finalise.
Media concerns were calmed by official responses of it all being ‘work in progress’, masking the fact contaminated products were still being sold, especially throughout Asia — and to the NHS.
And so it fell to The Mail on Sunday and the Daily Mail to become the voice of doctors and scientists too scared to go public, and of worried patients and their loved ones.
I have never revealed the name of my whistleblower, and I never will. I hope my anonymous hero is proud of ‘doing the right thing’, even when he faced losing his job and reputation. Despite the risks, his first thought was always for his patients.
Over the following year, he continued to show me evidence I could never have known about otherwise, and helped inform all my reports. As for the victims I spoke to, there were so many. But let me tell you about a haemophiliac I’ll call ‘Terry’. We have kept in touch for more than four decades, and we still talk a lot these days.
A member of many campaigning patient organisations, he is a victim who was given contaminated factor VIII for most of his young life, and was diagnosed with hep C in the 1980s.
Today, he lives with the threat of potentially fatal liver disease constantly hanging over him.
Terry, too, gave evidence to the inquiry. I told him I was writing this piece to mark the conclusion and here are some of his words: ‘We say we want to make sure this kind of thing never happens again. Well, of course, damn right it shouldn’t, but as long as there’s money to be made, greed and lies will prevail over truth and ethics. ‘Human cost and hurt doesn’t come into it. You stop a bully with a punch in the face. How do you stop a government lying?’
In answer to Terry, I would say you stop a government lying by publishing a story in the Mail. Then another story and another and another, until nobody believes government lies any more.
In my evidence to the Infected Blood Inquiry I said that ministers, particularly Norman Fowler, when Secretary of State for Social Services under Margaret Thatcher (1981-1987), and Ken Clarke, health minister (1982-1985), discussed the risks of imported blood with me around the time my first article was published.
Indeed, I have diaries that list dinner and lunch dates with both men at some of London’s nicest restaurants, such as Langan’s in Piccadilly. Those meetings were within the exact time frame of my first story in May 1983.
We were not discussing the weather. We discussed the stories I was working on, about the risks of imported blood and blood products, and I sought their thoughts and reactions. That is what journalists do.
The reality is that ministers and their underlings knew the risks of using cheaper, potentially contaminated, blood in May 1983, but feared to act quickly or decisively.
The defence is they were worried about causing panic, but there can be no doubt that the cost implications of the more expensive ‘cleaner’ blood on an already overburdened health service was a significant barrier.
This cost-cutting had tragic implications, as Terry and his family know all too well.
‘I’m a haemophiliac, my dad is, my uncle was. My dad is dying [from liver cancer caused by hepatitis C], a long, slow, drawn out death, from his exposure to contaminated factor VIII. My uncle died of hepatitis C he contracted from his factor VIII.’
So far Terry has, in his words, been ‘lucky’. But he says: ‘The ongoing threat from historic exposure is a ticking time-bomb that has ruined my life.’
When my breakthrough story was published, Terry was 17. Today he reflects: ‘At the time I had a girlfriend, my first one and
I met with my whistleblower: he was scared
The cost-cutting had tragic implications
probably the great love of my life. I told her it would be wrong of me to keep seeing her, that I could be subjecting her to a death sentence. I said I had to stop seeing her because of your story. I didn’t want to put her at risk.’
He then took the rebellious decision to stop taking factor VIII. His consultant and GP both begged him, then ordered him, to continue his treatment. Eventually he succumbed to their demands, because he believed they had his best interests at heart. They told him there was no risk. More to the point, there were no alternatives on the market that we, as a country, were prepared to pay for.
It’s something that infuriates him today: ‘My doctors lied to me and never discussed the risks.’
In 1984, at the height of the contaminated blood storm, Terry’s consultant told him she had been to a watershed pharmaceutical company briefing with many other consultants and health advisers at a hotel at Heathrow.
They were advised to tell their patients that the risks of contaminated blood, as reported in the Mail newspapers, were grossly exaggerated. Their patients should continue as normal.
Throughout this period, the storm of threatened litigation and censure continued against me and The Mail on Sunday. Safer, heat-treated blood products were eventually adopted by the NHS in 1985.
Terry, who later married and had children, thinks there will be no new truth from the inquiry’s final report. He believes there will be no new framework for justice, nor any commitment to transparency and honesty. Any compensation announced, he believes, will never fully account for the deaths and the lives destroyed. ‘We have known the truth for 40 years, since we read your article,’ he says.
‘This all started with money. It was all about the cheapest source of blood being good enough for us. And it’s ending all about money — the cheapest compensation being enough.’
Terry hates the idea that people will think the £10 billion of compensation reportedly set to be announced — and seemingly paid for by the taxpayer — is a fair pay out. ‘No amount of money can compensate for the human loss, the physical injury, the hurt that families have endured.
‘My wife and children can’t be compensated for what I’ve put them through. We should not be made to feel guilty about compensation. It should not be a dirty subject and it should not be an NHS loss.
‘Most of it should be recovered from Big Pharma — one year’s profit from one of the big companies would settle the UK compensation.
‘So, yes, the sums should reflect the damage done. It should hurt the government. Anything less will result in further legal action from us, from our children and theirs, that will drag on for years.’
I could agree with Terry that it is all about money. But the words that still hang in the air for me are the denials of those we trusted to be honest.
How, in a world driven by lies, conflict, greed, and inhumanity, do we protect and hold in our hearts empathy and caring — and the simple sense of ‘doing the right thing’?
For we would not be reading one word about the infected blood scandal if there was not, in this country especially, a desire for honesty and transparency when things go wrong.
I couldn’t write this if the establishment this very newspaper, and others, took to task was so powerful it could silence criticism.
I would have been fired if my bosses at the Mail hadn’t supported me and if others, like the many readers who wrote to me, hadn’t given me the courage to continue.
It is for every one of us to have the courage of the whistleblower, the conviction of the campaigner and to support a media that can still call to account our leaders and masters.
So perhaps this isn’t the end after all — perhaps it is just the beginning.
The Poison Line: Life and Death in the Infected Blood Scandal, by Cara McGoogan (Penguin, £10.99) is out now.