‘I caught hepatitis C – but no one told me’
Thousands were infected through blood transfusions in the 1980s – some are only just finding out,
‘Anyone who had a blood transfusion before 1991 should have a test for the virus’
Margaret Fraser* donated blood for the first time in June this year. She wanted to help with the pandemic effort and giving blood seemed like an obvious choice. Margaret, 62, had a blood transfusion decades ago, but has had chronic anaemia and been unable to donate since.
A few weeks later, Margaret received an alarming letter. It was from the NHS Blood service and it said: “Unfortunately, we were unable to use your blood for a patient because it tested positive in our routine hepatitis screening test. The results indicate that you have a hepatitis C infection.”
“I was absolutely shocked,” says Margaret. “Where could I have got it? All sorts ran through my mind.”
Hepatitis C is a virus that infects the liver, usually spread through blood-to-blood contact. Margaret discovered that a risk factor for hepatitis C – alongside intravenous drug use and alcoholism – is having had a blood transfusion before screening was introduced in 1991. She had a transfusion after a miscarriage in 1984.
“The idea that I’ve had this for decades, I thought it couldn’t possibly be the case,” she says. “There’s been no flag raised. No campaign that I would have seen to cause me to get tested.”
Margaret assumed that transfusion records would have been kept and infections traced. “That would be a reasonable expectation,” she says. “So it was a shock to find out there could be so many people wandering around at risk and not have realised it.”
Margaret found out that she was part of a scandal that has rumbled on for years, in which thousands of British people were given blood and blood products infected with HIV and hepatitis C in the 1970s and 80s. The story is under investigation in Bed of Lies, my new podcast series for The Telegraph. Just under 5,000 people with haemophilia were given viruses from a medical treatment called Factor VIII, and up to 28,000 are thought to have contracted hepatitis C from blood transfusions in the years before 1991. The true number is unknown, as many have died without being diagnosed.
Screening of blood was introduced in 1991, when the first test for hepatitis C became available, but there has never been a nationwide testing programme for everyone who received a blood transfusion before that time.
A public inquiry is under way and is now starting hearings into what went wrong with blood transfusions.
When I speak to Margaret, barely a month has passed since her diagnosis and she is still processing the news. She initially felt numb and in disbelief – she spent three days in bed worrying that she could have passed it on to her children and grandchildren. Luckily, she had not. As her discovery has sunk in, it has started to make sense.
Margaret retired when she was 60. She was going to start looking after her grandchildren two days a week and while she wanted to carry on working part time, she didn’t have the energy.
“I was just too tired,” she says. “I can look back now and understand why I was so tired all the time. It’s had a real financial impact on me as well.”
Hepatitis C can lie dormant for as long as 30 years, slowly attacking the liver. By the time symptoms appear it is often too late – untreated it can cause liver cirrhosis and cancer, and be fatal.
Margaret is one of the more fortunate survivors of infected blood. “I have minimal damage and I can be treated,” she says. “My body’s done a very good job for me but I’m getting older. In another five years I could have been very ill.”
I have spoken to more than a dozen people who contracted hepatitis C from blood transfusions decades ago but have only recently found out. They describe a range of symptoms, from excruciating pains lasting years to itchy skin, brain fog, digestive issues and mood swings.
For some, diagnosis has come too late – one woman passed hepatitis C to her daughter, who died from the disease. Stephen Smith found out he had hepatitis C this summer after his new GP tested him for the virus. He has suffered from crippling symptoms for seven years. He now fears he could have passed the virus to his late wife, who died from liver cancer.
Samantha May, who runs the Hepatitis C Trust’s helpline, says she hears from two people a month recently diagnosed as a result of blood transfusions they had decades ago.
“Many thousands of people who had blood transfusions before September 1991 may have gone decades without having any symptoms to alert them to having this illness,” she says. “I strongly believe that everybody who had a blood transfusion before 1991 should have a test for hepatitis C.”
Identical twins Simon and Nigel Hamilton, 61, know just how devastating hepatitis C can be. They both have haemophilia and were given the virus by Factor VIII, a treatment that was deemed a “miracle” when first released in the 1970s. But plasma for Factor VIII often came from high-risk American donors in prisons and on Skid Row. So thousands of people with haemophilia in the UK were infected with hepatitis B and C, as well as HIV.
Nigel was diagnosed with hepatitis C in 1991, after the first test became available. He ate a “dodgy prawn” and tore his oesophagus from food poisoning – haemophilia makes him more susceptible to injuries like that. In hospital for emergency treatment, the doctors also diagnosed Nigel with hepatitis C. He had received infected Factor VIII in 1976 during a cosmetic eye operation but had not been told.
“I had a family at that stage, four sons and a wife,” says Nigel. “I don’t have them now. My wife decided that it just wasn’t practical for me to wash the kids, eat with the kids, and so on, because I was carrying hepatitis C. I’m afraid my marriage broke down.”
Simon received the same news a few years later – like Nigel he had contracted the virus in the 1980s. There were no effective treatments available back then for hepatitis C. Both brothers suffered from extreme fatigue and liver cirrhosis.
In 2017, Nigel developed liver cancer and needed a transplant.
“I saw my brother descend to near death, then watched him have the transplant,” says Simon. “It’s something that frightens me. I’m pretty gritty, but I hope to God I never have to go through that.”
After the transplant, Nigel retired early from his work in management. “I’m enjoying what time I have left,” he says. The brothers receive six-monthly tests that monitor the progression of their conditions. But for now, their health is stable. They stay as active as they can, rowing and going fishing. They are among some 2,000 people seeking justice in the Infected Blood Inquiry.
With people like Margaret being given new diagnoses every month, the number of survivors is growing. “I’ve been ‘lucky’ that by chance I went to donate blood while I’m still well,” she says. There are new treatments that can eliminate the virus for most people – and her course has been successful. “If I can help get a story out that reaches people who can get this diagnosed while they’re still well then that’s really important. We need to find more people like me.”