A Long Battle for the Truth: Haemophilia, Contaminated Blood and the Five Year Anniversary of the Archer Inquiry
by Alison Smith
Yesterday, I was working on a briefing for MPs, updating the Haemophilia Society’s objectives to take account of a parliamentary debate a few weeks ago, when I realised that it was exactly five years since Lord Archer announced his Independent Public Inquiry into the Contaminated Blood Disaster. I paused for a minute and realised that it was time to reflect on the last five years of our campaign: the progress that we have made, the fights that lie ahead, and the inspirational campaigners that battled for the truth, too many of whom we have lost along the way.
When I was hired to write the Haemophilia Society’s submission to the Archer Inquiry, almost five years ago, I had only a cursory understanding of the tragedy that left almost 5,000 people with haemophilia infected with HIV and/or hepatitis C. I knew that haemophilia treatment used to be manufactured from human blood donations, and that patients had become infected with HIV and hepatitis C as a result. But I didn’t realise that the victims of this disaster, the worst in the history of the NHS, had been neglected by successive governments and were living in poverty.
Soon after starting the job, I was told that thousands of relevant documents had mysteriously disappeared, from Department of Health files to individuals’ private medical records. And sifting through dusty box files, I discovered that many people were not told of their HIV positive status for years after they were infected, even though (in some cases) their clinician had described the progression of their illness in the Lancet. I was shocked, too, by evidence that people with haemophilia had routinely been treated with medicines manufactured from the blood of prisoners and paid ‘skid row’ donors, even though it was known that such donations carried a high risk of blood-borne viruses. It soon became clear that many elements of this disaster were avoidable.
Despite their understandable distrust, people with haemophilia remained reliant on the NHS for their treatment. The psychological toll of the disaster was worsened by the fact that successive governments preferred to sweep the tragedy under the carpet rather than learn from past mistakes. It was as if they thought that acknowledging the disaster automatically meant taking the blame. Although the Archer Inquiry wasn’t ‘official’ (i.e. government sponsored), it was cathartic because it allowed the haemophilia community to come together, for the first time, in a public forum, to share stories of loss, illness, poverty, stigma and betrayal.
Following Lord Archer’s recommendations, some progress has been made towards improving the financial situation of those with HIV and late-stage hepatitis C. More needs to be done, particularly for hepatitis C widows and those with chronic hepatitis C who do not yet qualify for Skipton 2 payments (there is little financial help until liver cirrhosis sets in). The Penrose Inquiry is currently carrying out a forensic examination of the circumstances that led to the contaminated blood disaster in Scotland. Although the fight continues, both the Scottish and Westmister Parliaments are much more engaged in the debate than they were five years ago, which is an achievement in itself.
It has been a privilege to work with the haemophilia community, a kind, passionate group of people who have suffered so much. For twenty-five years, they never gave up trying to right this historic wrong, no matter how many doors were slammed in their faces. Whenever our campaign takes a tiny step forward, it is impossible not to feel the loss of those who saw the start of Archer but didn’t live to see its end.
On this day, I also reflect on the hundreds of victims and campaigners who perished before Archer even began. Many suffered the intense stigma of AIDS in the 1980s without ever living to see an effective treatment, let alone an inquiry. Those with hepatitis C (or non-A non-B hepatitis, as it was formerly known) were often told by doctors that their illness was caused by drinking too much, when they had not touched alcohol for years and knew themselves that their liver had been attacked and destroyed by a virus.
Lord Archer’s hearings gave the infected and bereaved a chance to share their tragic stories, which will stay with me forever.
Alison Smith authored the Haemophilia Society’s submissions to the Archer Inquiry and the Penrose Inquiry. She continues to assist with communications and Parliamentary lobbying. These are personal reflections.
Follow Alison on Twitter @AliFionaSmith.
This tells a real story of how the UK HAEMOPHILIACS have, and continue to be treated by a government who claim to be compassionate, Fair and tell us they believe in looking after families.
A government that are now leaving 83 % of those infected with Hepatitis C with nothing, no income, no support, no life insurance, NOTHING.
How will you vote in the next election?
The only lives these people put a value on is their own.
Hi Mike, thanks for your comment. You are exactly right that one of the biggest problems with the current settlement is that people with hepatitis C cannot claim assistance until they have cirrhosis, and most are very, very ill long before they reach the point. On the plus side, the Minister (Anne Milton MP) said in the parliamentary debate on 8th Feb that she was open to a review of this – so it is important to keep up the pressure. There has been some movement since the start of Archer 5 years ago, albeit patchy and gradual, from all parties: the previous government (Labour), the current government (Lib Dem/Tory) and the Scottish government (SNP). All we can take from this is that every party has excluded whole groups of people that urgently need help, which is obviously unacceptable, but that all are open to negotiation if we keep chipping away.
Well Alison. we will just have to keep chipping then.
Thanks and take care.
Mike K
Hi Allison.
I forgot to tell you I have been a long standing member of a ca paigne group and last october I met Ann Milton aong with some other HCV infected.
WE had requested this meeting to discuss the unfairness of the division beetween 1st and 2nd stage HCV.
We presented Ann Milton with a report proving that liver damage is not the only illness HCV infection causes.
The group, contaminated blood campaigne wil be meeting with Ann Milton again and we will be asking her to repond to the document we presented her with.
http://www.cbcuk.org.uk/ please feel free to visit our web site or even join our group.
Thanks and take care,
Mike.
I was infected with Hep C, probably during the 1970s, when I was given factor VIII as a child. I was away from home at boarding school and had no say whatsoever in the matter. Most times it was against my wishes. Now I’m in my fifties and still no proper recompence from successive governments. They are waiting until we are all dead, then they’ll announce compensation measures for anyone still standing. The whole situation stinks.
Thanks for commenting. We need to keep chipping away – it’s shocking that people are very ill with hepatitis C and getting no help at all!
Me again! I just had a look at Michael Kenwright’s excellent campaign website, which I was previously unaware of. There is no doubt in my mind that the single most important issue for Hep C infected haemophiliacs is proper financial compensation and ongoing financial support, as per the Skipton 2 payments that 80% cannot claim. We cannot be cured of the disease, but we can be helped to live our lives more comfortably. Good luck with your ongoing campaign, Mike, and thank you.