“Every morning I wake up and there is a small part of me that thinks, ‘Is today the day I’m going to be diagnosed with some sort of cancer?'”
This is the question Susan Lee asks herself every day. It is part of the mental anguish of living with Hepatitis C.
Susan was born with Von Willebrand disease.
As a child, her blood clotting disorder was treated with a product called Factor 8. It was supposed to revolutionise treatment for haemophiliacs.
Susan with her father
Instead the American product farmed from prisoners and drug addicts was infected with HIV and Hepatitis. It was never screened or treated before being injected into the veins of patients.
The risks were known. Susan’s father raised concerns.
“I remember specifically on one occasion he went into the consulting room and spoke to my consultant,” says Susan.
“[He] said, ‘I’m very worried about this, and I want you to let me know if Susan has or will receive any American blood products’.
“And he said to my father, ‘Absolutely not’.”
Hepatitis C has had a devasting impact on every part of Susan’s life
However, at 14, Susan discovered she had been infected with Hepatitis C, like thousands of other patients in the worst NHS treatment scandal in history.
Susan believes patients like her were exposed to great risk and potential death to increase profits for the companies that were producing these blood products.
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“I think unfortunately it always comes down to cost implications. And we know that American blood products were cheaper from those big pharmaceutical companies.
“We know there were other treatment options available. There were German products that were out there and could have been used, but at a higher price point, and they were not chosen.”
The Hepatitis C infection has had a devasting impact on every part of Susan’s life. She has had to give up her career as a barrister.
Susan with her mother
“It’s been a really, really difficult time for us as a family. And it’s intergenerational because we were given these products to take home, my parents were taught how to inject. My mother has a huge feeling of guilt surrounding that,” she says.
“Three weeks ago, she sat me down and said, ‘I’m so terribly sorry.’
“I said, ‘You’ve got absolutely nothing to be sorry for. It was nothing to do with you. You did your best’.
“Also my children, from having witnessed the times that I was really, really sick, you know, my daughters asking me, ‘Mummy, why can’t you run in the school races and for sports day?’
“Because I could barely lift my head off the pillow to get out of bed to be there.”
Later this morning, Susan and the thousands of other victims of the infected blood scandal will get answers to the decades-long search for the truth.
Westminster’s Methodist’s Central Hall where Sir Brian Langstaff will deliver his report into the infected blood scandal
At Westminster’s Methodist’s Central Hall just after midday, Sir Brian Langstaff will deliver his report into the infected blood scandal. It is expected to be damning.
Des Collins, senior partner of Collins Solicitors which represents 1,500 victims and their families, said the inquiry chair is likely to hold many people accountable.
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“If you are going to point the finger at someone, you’ve got to give them notice and it’s that notice process which has delayed [the report] probably for the last six months. So a lot of people will have the finger pointed at them.
“They will be held accountable for each individual part of the scandal, which is appropriate insofar as their involvement is concerned.
“I don’t think we’re going to get the finger pointed at one person saying, ‘You are responsible for the whole thing,’ because there are so many people involved in it and they’re all making individual decisions.”
Westminster’s Methodist’s Central Hall
The significance of this moment cannot be overstated.
The great hall will be full of people infected with deadly diseases in secret trials, bereaved parents who saw their children die and all of the others affected by this preventable tragedy.
The atmosphere will be charged with emotion, anger and hopefully relief.
The delay in delivering justice has compounded the grief and anguish felt by so many. After being lied to and ignored for decades, they finally have their day.
This report must mark the beginning of the end of this shameful scandal.
Sky News will have full coverage of the infected blood report on TV, online and on the Sky News app today