Saturday marks the 30th anniversary of World AIDS Day. While we often still think of AIDS as being restricted to particular confines of the population or as a sexually transmitted disease, there is another group of people, both dead and living afflicted by HIV. They were and are, the forgotten haemophilia generation.
When I first began research on the contaminated blood scandal in 2015 I had no idea of the scale of the injustice I was about to learn, an injustice which killed my father and approximately 1,200 other haemophilia patients in the UK who were infected with HIV. It happened in the 1980s through a blood-plasma product known as Factor VIII which provided a perfect vessel for the blood-borne virus HIV.
A so-called “wonder medicine” as it was sold to the NHS by the American pharmaceutical companies; it was supposed to allow haemophiliacs to treat their blood-clotting disorder from home, instead of going to hospital for treatment. However the product was made by mixing together the plasma donations of tens of thousands of high risk donors including prisoners, homosexual men, IV drug users and prostitutes.
By 1996, the majority of people who had been infected with HIV through Factor VIII medications were dead. Today it is thought only around 200 of the 1,200 people originally infected are still alive. There were also 71 partners of Haemophiliacs unwittingly infected, of whom at least 31 have died.
My father died in 1993 when I was four years old, having watched a number of his Haemophiliac comrades perish shortly before him. Attending the funeral of a close friend a year or so before he died, my dad turned to my mother and said “I’m next”, his prediction would sadly be true.
The suffering of people affected in this way was compounded by the government’s AIDS campaign in the late 80s, which was spearheaded by the then Conservative health minister, Norman Fowler. Falling tombstones in TV adverts and the four dreaded letters topping leaflets and posters: “AIDS - Don’t Die of Ignorance” spelt almost total social ostracism. This is what they lived with, a society who had essentially been told that those who have AIDS are ignorant.
Driven into silence through stigma, some of the victims did themselves attempt to campaign for the truth about their infections and the Governments response - but it was only this September following protests, legal action and wide political support that a public inquiry finally opened, albeit about 30 years too late.
Chaired by Sir Brian Langstaff, the Inquiry is currently collating evidence and is expecting to open its next round of hearings in April 2019. Meanwhile the group legal action led by Collins Solicitors (in which over 500 claimants are suing the Department of Health) continues to rumble through the High Court. On this World AIDS Day we must remember the forgotten, fallen and silent victims of AIDS.
Jason Evans is founder of Factor 8 – Independent Haemophilia Group. For more information, visit their website here