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.