New podcast tells story of how contaminated blood scandal ripped family apart
- Credit: Archant
This week, we launch the second of our We Need To Talk campaign features. It is called We Need To Talk...Contaminated Blood and looks at the history of how men, women and children contracted and in some cases died from Aids and Hepatitis after receiving infected blood from the NHS. The statistics are shocking, but the personal stories behind the figures are truly heartbreaking.
During the 1970s and 80s thousands of NHS patients were infected with life-changing, chronic diseases, including HIV and Hepatitis, after receiving donated blood and blood plasma products from the NHS.
Most of those infected suffered from a genetic bleeding disorder called haemophilia, which results in the blood not clotting properly. In the 1970s, freeze-dried clotting agents called Factor 8 and Factor 9 became widely available and revolutionised treatment because haemophilics could self infuse at home.
We now know that the NHS struggled to keep up with demand and imported blood and blood products from the US. Some of this imported blood came from drug addicts, sex workers and prisoners and there were no screening programmes available so infection was passed on.
It is estimated that more than 1,300 people in the UK were infected with HIV, more than 4,000 with Hepatitis, and at least 1,500 people have died, and that figure continues to grow. Some were co-infected with Hepatitis and HIV. Many also suffered the social stigma of a HIV diagnosis at a time when there was mass public hysteria, prejudice and ignorance around this new virus sweeping the world.
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St Neots man Tony Farrugia, agreed to be interviewed for our podcast and tells the story of his father, two uncles and a cousin who were all infected.
His father, Barry, died in September 1986, at the age of 37, from the related causes of the HIV virus. He was given Factor 8 concentrate from imported blood to treat his mild haemophilia. He developed Hepatitis B and C, and HIV. Tony says his father’s death ripped the family apart - he and his twin brother ended up in separate care homes.
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“I think it would have been about 1983 that Dad became unwell. He looked like he’d lost a lot of weight. His mood swings were up and down. His mental health was becoming really bad. From July ‘84 to round about the April of 1986, so a good 15 months or so, he was fairly well and then there was a rapid decline. I visited my dad in the June of 1986 and saw him again in the August. The care home dropped me and my key worker at the hospital. We got an ice cream and walked across to the hospital garden. Dad said to me, ‘can I have a bit of your ice cream’. I went to hand it over and one of the nurses stopped us and said you can’t share that with your dad. I’ve since found out that he had a mouth infection, ulcers in his mouth that were bleeding and that’s why I couldn’t share that ice cream with him.”
Tony’s uncle Victor died, aged 63, in 2002, from HIV-related causes after receiving infected Factor 8. His uncle David died of Hepatitis C in 2012 at the aged of 69. Tony also has a cousin who is infected with Hepatitis C and remains poorly with stage 2 cirrhosis of the liver.
Many of the victims and their families also suffered the added stigma of living with the public’s perception and reaction to AIDS. In the early days of the AIDS epidemic there was widespread hysteria and ignorance about how the virus was transmitted. Tabloid newspaper headlines were screaming ‘Gay Plague’; public information adverts showed images of tombstones and the grim reaper in an attempt to scare people and promote safer sex practises.
“Uncle Vicky suffered terribly with the stigma of HIV. We’re in 1986/87, and he lived in a small-knit community where everyone knew each other,” explains Tony.
“There were occasions when he was with his sister in the local cafe and people would literally get up and walk out. There was vandalism to his front door, vandalism to his car, with ‘AIDS scum’ scratched on the paintwork. The care workers were actually turning up at his property in full, yellow bio-hazard suits. Vicky found that quite distressing.
“You have to remember the huge stigma around HIV and AIDS during the 1980s. When kids at school made jokes about AIDS, I have to say I joined in rather than admit my dad had died from HIV.”
If you would like to listen to the We Need To Talk...Contaminated Blood podcast for free via our host Audioboom, go to: www.podfollow.com/need-to-talk
The podcast is also available on Apple Podcasts and Spotify.