The government must take action to give victims of the infected blood scandal justice before it’s too late
Haemophiliacs were invisible as their community was ravaged by HIV/AIDS in the 1980s. There must be long overdue justice for these forgotten victims.
In the 1970s and 80s people with haemophilia were given blood products infected with HIV and hepatitis viruses. It was the result of a new treatment using a clotting agent Factor VIII intended to improve their lives, but which did quite the opposite. It was a scandal then and remains a scandal today.
1,243 haemophiliacs are known to have been infected with HIV as a result of the infected blood scandal. The exact number of wives and children infected and impacted are still not precisely known. At the time there was no effective treatment for HIV and today less than 250 are still alive, with victims being lost at a staggering rate.
Now – finally – the biggest public inquiry ever in the UK is looking at those who contracted HIV and Hepatitis C from blood products and blood transfusions in the 1980s. It was not just young gay men in denial about the new killer, as shown in Channel 4’s It’s A Sin, but the doctors of haemophiliacs and the Department of Health decision-makers who played god, prolonged the suffering and still deny justice.
The horror stories from that time are being laid bare in a new series, Last Chance for Justice, being published by Terrence Higgins Trust. David and his twin were told the presence of HIV antibodies in his system would ‘keep him safe’, only to be told by the same doctors that it was actually an HIV diagnosis when there was no cure or even effective treatment.
Clair Walton not only lost her husband to a HIV-related illness but lost her freedom. She and Libby MacRae lost their chance to have children too. Or Martin Beard, where Birmingham Children's Hospital conspired with Leicester Royal Infirmary to hide his HIV status from him for three years. Martin learned of his diagnosis from a doctor not party to the cover up, delivering the news he had just two years to live.
The daily evidence sessions are so damning, that before the inquiry is over we already know that the government needs to act
Recently, the Inquiry began hearing from organisations put in place to support the victims. It was hurtful testimony for those involved and no less shocking to anyone watching.
The Thatcher and Major governments set up various schemes to support those facing shocking consequences from the blood products that the Department for Health insisted were procured by the USA and infected so many. Each had a slightly different remit to support a slightly different affected community – one for those with HIV from blood products, another for those with hepatitis C from Factor VIII, another from blood transfusions … the list goes on.
Peter Stevens was involved in the leadership of a number of these support groups – over a 30 year period he was involved in the MacFarlane Trust, Eileen Trust and Skipton Fund. The archive of the involvement of Stevens and a number of his colleagues shows the level of disdain people living with haemophilia and their families were subject to.
One trustee wrote to Stevens when he was chair of the MacFarlane Trust to say “sorry that you are getting so much stick from 'the great unwashed'” and received no rebuke. In an email to a colleague, Stevens said: "It is irritating that somebody so thick can come up with such meddlesome suggestions."
He told the Inquiry that the spending of the Trust should not be judged by compassion or against the objectives of the organisation but “the Daily Mail test” – what would be acceptable to the editorial writers of one of Britain most notoriously right-wing tabloids. He concluded in his evidence that this “was still [his] view”.
If those were – and remain – the views and attitudes of someone put in charge of the institutions established to care for those who contracted HIV from government policy, just imagine the challenges from wider society. Add to that the HIV stigma in the 1980s and you can see why HIV was able to prey on their inequality, their lack of power and voice in our system.
The Inquiry is painful but very necessary – those who are still alive, and the many loved ones cannot wait any longer. Time is not on their side. This Inquiry really is their last chance for justice.
The daily evidence sessions are so damning, that before the inquiry is over we already know that the government needs to act. An apology, possible convictions, comprehensive compensation. The only question is will it be too late for everyone?
Richard Angell is head of policy and parliamentary affairs at Terrence Higgins Trust.