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Death of haemophiliac campaigner Haydn Lewis

Susan Watts | 18:25 UK time, Friday, 21 May 2010


Haydn Lewis, the haemophiliac campaigner who featured in a number of films on Newsnight, died this morning (Friday 21/5).

He would want me to point out that, in a timely development, a freedom of information request he had been chasing for years came through on Thursday. Haydn was told about it.

Haydn wanted to see a letter from 1990 from the-then Chief Medical Officer, Sir Donald Acheson, to Kenneth Clarke, who was then Secretary of State for Health.

This was when the government faced litigation from the haemophilia community over their infection with HIV through contaminated blood products.

The letter could prove an important missing piece in a puzzle Haydn had been putting together for years. The Information Commissioner's ruling came through yesterday - that these papers should now be disclosed, and that the Department of Health (DoH) breached the freedom of information act in its handling of this request.

The DoH now has 35 days in which to release the letter, or appeal.

Haydn died disappointed that Gordon Brown felt unable to take up an invitation to visit him, to learn about how widows of haemophiliacs often struggle to make ends meet.

Here you can see Haydn talking about this issue in his last appearance on Newsnight:

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And the rest of the haemophilia community has yet to see how the new government is going to respond to this issue.

An early sign will be how they handle a court ruling, shortly before the election, and after Haydn's last appearance on Newsnight. That ruling found in favour of composer Andrew March, also a haemophiliac. He challenged the Labour government's position over compensation in the UK, as compared with that in Ireland, and won.

Haydn had developed liver cancer following infection with the Hepatitis C virus. He had survived a liver transplant, but the cancer returned. It's hard to imagine the strength of character that drove him.

Not only was Haydn also living with HIV and the likelihood that he had been exposed to vCJD, he also lived with the knowledge that all of this was the result of contaminated blood products aimed at treating his haemophilia.

These were given to him by the National Health Service, in the 1970s and 80s, under successive governments.

Haydn wanted to understand what went wrong, and he unearthed more about this than pretty much anyone, and did so not just for himself but for scores of other families he knew who were, and are, in a similar situation.

He was a walking encyclopaedic guide to the thousands of government documents in which officials, scientists, doctors and politicians revealed how thousands of haemophiliacs became infected just like Haydn.

All the more remarkable then that Haydn became the generous man who will be missed by so many people from today.

He and his wife Gaynor struck me as more like a teenage couple, than a team married for 35 years with two sons and a grandson, on whom Haydn doted.

They were a remarkable pair. Haydn had inadvertently infected Gaynor with HIV, yet their bond was strong. They were hardly ever out of each other's sight.

Haydn was very funny, and giggled with a sometimes childish sense of humour. I spoke to him often, and he was always positive.

I'm glad we managed to speak on Tuesday, when he chuckled about having a foot massage in the hospice in Cardiff near his home. He also told me he was tired.

I'll miss Haydn. He had become a friend as well as a reliable and informed advisor.

Haydn was only 53. He had a lot more to give.


  • Comment number 1.

    That's very sad. I began watching the film when shown on NN but found myself so bothered by it that I couldn't see it through. Very sad he didn't get to see the letter and Brown wouldn't see him.

    Hope you keep us posted on the letter and any other developments.

  • Comment number 2.


    Kenneth Clarke has drawn income from sale of tobacco products to 'his own people' (and Johnnie Foreigner).

    I seethe at his elevation. (But then, Archer is back assailing our eyes and ears, with BBC blessing.)

    Britain is fundamentally 'dysfunctional'. Clearly, New Politics is not even going to go there (see above).

    If the contaminated blood documents have not 'gone missing' and if they say anything of relevance, we might just be scraping off some of the ordure.

    Make it so.

  • Comment number 3.

    Thank you for reporting Haydn's death with such sensitivity. I well recall your dedicated reporting of his efforts over the last few years. I wish his family and friends well, and hope that we may soon better understand the events of the 1970s and 80s with respect to NHS blood products.

  • Comment number 4.

    I am 3 years younger than Haydn, born in 1960, and i suffer from all the same conditions as he endured. I never met Haydn, but i followed his story, and greatly admired his commitment, enthusiasm and his bravery. I would have liked to have told him he was luckier than me, to have found a loving partner, to have kids, and a grandson, something i will never get the chance to do. I want to send my very sincere condolences to his wife, family and friends, i hope i have gained a little of his qualities, from suffering the same adversities as he did.I always thought i would get the chance to thank him personally for all his efforts, sadly i never will. I remain eternally grateful for his help. Cheers Haydn. Andy

  • Comment number 5.

    Pure Tragedy!
    Enough is more than enough!
    Where and when will this all end?
    Just how many more of our community have to die before someone sticks their necks out and admits how and why they so wantonly played with people's lives?
    Lost my wonderful father to infected blood in January 2000

    Rest in peace Haydn

  • Comment number 6.

    How long can we allow this injustice to continue? I was ‘lucky’ I was given only HCV. I know how this affects ones life. Poor Haydn and all who went before. Please justice before more dies.

  • Comment number 7.

    This is so sad for his death and my thoughts are with his family. This affects me a lot since my Mum got Hepatitis C through blood products which she never should have had near her.

    I agree with Ollie C, how long can this injustice continue? How many more deaths does it take for any UK government to open their eyes and see how unfair this is. Both the Tories and the LibDems talked about a fair society, many they should come and talk to people like my Mum and Haydn's family and learn the real truth of unfair.

    For Haydn and everyone else, we must keep going.

  • Comment number 8.

    Susan, I want to thank you from the bottom of my heart for all the support you have shown to Haydn and his family, and for ensuring that his death did not go unreported. I agree wholeheartedly with previous comments asking when all this will end; it seems unbelievable that in the face of so much evidence and when dealing with such a relatively small group of people, this wasn't sorted out years ago.

    Haydn was a giant among men and one who deserved so much better from his country. He died not knowing what the future would be for Gaynor - not knowing if we would ever win our fight - but I can assure everyone that I along with all the campaigners I have spoken to since Haydn's tragic death have vowed to increase our efforts to attain his dream and to bring about an end at last to this tragic saga.

    Haydn was a wonderful person and he will be missed for ever. We plan to ensure that at least his legacy lives on.
    Sue Threakall
    Secretary, taintedBlood

  • Comment number 9.

    God bless Haydn and his family at this tragic time. I knew and respected Haydn as a fellow campaigner in what remains a terrible NHS treatment disaster which has stolen so many lives with devastating consequences. like Haydn I am battling with the disease that has robbed him of his life, and I am so angry that his last request to Gordon brown fell on deaf ears, and despite supporting him myself by writing we never had a response. Shame on you Gordon for ignoring the plight of this good man, and every other family affected by this, whom he fought for through his campaigning. In Haydn's name and the haemophilia community we will not give up the fight for justice.

  • Comment number 10.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 11.

    This is a very tragic story which I have highlighted on my blog, with credit given to you for raising this issue on behalf of these innocent people whose lives have been blighted through no cause of their own.

    I wanted to bring a related issue to your attention following an appeal from an ME sufferer for increased vigilant screening of blood donors. You can read it here: I hope this will be of interest to you and your readers too, and that action will be taken to bring the UK blood donor screening in line with other countries.


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