The Jameel Institute's Katharina Hauck speaks to TalkTV about her role as a co-convenor in the Infected Blood Inquiry

Professor Katharina Hauck, deputy director at the Jameel Institute, spoke with TalkTV's Trisha Goddard about the health and economic impact of the Infected Blood Inquiry. Katharina was a co-convenor of the Infected Blood Inquiry's health economics reports, instructed by Sir Brian Langstaff.

Recording

Transcript

Trisha Goddard: Joining me now is the person who was co-chair of the [Infected] Blood Inquiry Report.

Professor Katharina Hauck is deputy director of the Jameel Institute for Disease and Emergency Analytics and, as I said, she was co-chair of the [Infected] Blood Inquiry.

Katharina, thank you so much for joining me. Of course, this week it was announced that – the headline that the newspapers took was – some people could get £2 million. I think, in the interim, people are to be awarded £210,000.

But the more one reads about this scandal, the more awful, especially when you hear some of the individual stories, the more awful it is.

Katharina Hauck: Yes, absolutely. I think, as an academic being instructed by Sir Brian Langstaff to study the health and economic impacts of the Infected Blood Inquiry, it was really one of the most difficult, I think, both academically and emotionally, topics for me and my colleagues to work on. And really, our hearts go out to all those who were affected.

So I played really just a very small role in that inquiry. I was co-convener for one of the reports that were submitted to the inquiry, or that were commissioned by the inquiry, in order to understand what went on.

So, there were colleagues that were working on clinical aspects, on aspects of medical ethics, on the psychosocial impact of the infection and, of course, this inquiry went on for many, many years in order to get to the bottom of what had happened.

We have heard now the final report, finally published by Sir Brian Langstaff, and I'm sure there was great comfort for all the families and those affected by the tragedy.

Trisha Goddard: It must be very difficult to put a price on the quality of life, the illnesses and the early deaths.

As you said, there are psychosocial, health and caring costs, because there would have been a lot of people paying for carers all these years and then having financial difficulties at home.

How do you go about quantifying how much people should be paid and who gets paid?

Katharina Hauck: Of course, the question of how high the compensation should be is a legal question that we, as the economics group, are not qualified to answer.

What our role was, we tried to estimate the lives that were not lived to their full potential, or the lives that were cut short.

What we estimated was that the costs to the individual, in terms of lost health – in the aggregate, so for all the individuals affected – ranged between 70,000 and 200,000 lost life-years. So, just as a comparison, in Netherlands, COVID-19 cost 60,000 life-years.

So, over the 50 years that this scandal has been going on, a lot of lives were lost due to early death but also due to terrible ill health.

Trisha Goddard: We forget, it's not just the ill-health, it's that you might lose your job, then you can't pay your mortgage, you can't pay your bills – it goes all the way through, doesn't it?

Katharina Hauck: Yes, indeed, and we could only really capture some of these.

We tried to capture the lost earnings due to individuals being too sick to work, or work productively, or having to stop before retirement age, and these costs are enormous indeed. For the around 30,000 people affected, we estimated that they could be as high as £2.6 billion.

The last part of our analysis was, indeed, the costs due to health and social care that was carried both by the NHS but also by the affected individuals themselves and their families, who cared for them and could not go to work, and we estimated that these costs were between £900 million and £1.6 billion over the 50 years.

So, these are the estimates that we generated to the inquiry, but – as you said – it was very difficult to get a handle on the numbers and aggregate all these costs up, because records were destroyed, and it wasn't clear – and isn't clear until the present day, actually – how many people are affected by that.

Trisha Goddard: As you say, yes, records were – as I said in the introduction – records were destroyed, and the inquiry showed that there had been a deliberate cover-up.

So, for all of those people, having that money back, many of them say, from a human point of view (and I'm sure, sitting in, you've heard all the stories, I've only caught upon some of them), often what people need – well, they can't move on if they're living with that – but it's just to hear "Sorry", just to have people say, "We're sorry", just to admit what they did.

Because for many, many years, these people were – going back to Margaret Thatcher – being told, "You're being silly, you've got the best care", and that's the worst thing, when you're suffering, to be dismissed as being mad or bad or sad or anything else, isn't it?

Katharina Hauck: Yes, I talked to some of the affected individuals over the years, working on this, and I think, for them, it was terrible being told, "Oh, you received the best care that there was," when this was clearly not true.

It's difficult to understand why the UK didn't hold such an inquiry earlier. In other countries, these blood scandals happened as well, and the inquiries happened in the 1990s, so why did the victims have to wait so long?

Trisha Goddard: And that is the question. I thank you so much for joining us to shine a little bit of light on what was a very complex issue.