Finally learning how my dad, Jonathan Evans, died from AIDS is the main thing I remember about starting secondary school.
Our IT teacher introduced us to this new-fangled thing called Google, and while other children searched for their favourite TV shows or the latest craze, I searched for HIV and infected blood products.
This began my very long journey into discovering a disturbing truth; what happened was no accident.
Until then, all I knew was that my dad died from AIDS, it was something to do with blood products, and it shouldn’t be spoken about. My mum had told me that much, but it upset her too much to discuss it beyond that.
Back in 1993, my dad was 31 when he died after being infected with HIV and Hepatitis C (HCV) through infected Factor VIII blood products. Although I began to read some of the story in that IT lesson, I still didn’t fully understand as much of what happened was still unknown to the public at that time.
It compounded the sense of mystery around my dad’s death even further. It made me even more hesitant to ask my mum about it further and I didn’t.
Beyond family photos and videos, I only have two memories of my dad. Him being on his deathbed on the day of my fourth birthday and the day of his funeral.
I sat in a church, not fully grasping what a funeral was.
I couldn’t understand the gravity of what had happened to him. My mum has told me that I would often ask ‘when is Daddy coming back?’ and she had to tell me time and again that he wasn’t.
Only now, 30 years on, my family and I are finally getting closer to answers. Close to getting justice for my dad.
From the moment he found out he was infected with HIV, Dad’s life was ruined. His physical health deteriorated in the years leading to his death – and he also faced such cruel stigma, often from his own neighbours.
The attitude towards AIDS in the ‘80s and early ‘90s was so severe that my mum was sacked from her job in a local Tamworth bakery. She wasn’t infected, but the owner thought other staff might quit, or customers would feel unsafe once word got around that her husband had HIV.
This wasn’t speculation; the owner explained his reasoning to a local newspaper at the time.
That was the storm I grew up in – stigma, pain and death.
Even though my dad had died from AIDS, the stigma didn’t. I remember being in Year 5 in primary school when a girl called me ‘AIDS Boy’ and told other children they shouldn’t drink from the water fountain because I had.
She had heard about what happened to my dad from her mother.
When I told my first high school girlfriend about what happened, her immediate reaction was to recoil and ask if I had ‘it’.
As I learned in that IT lesson, what happened to my dad wasn’t unique; he was one of some 1,250 people infected with both HIV and HCV during the infected blood scandal.
The infections came via a pharmaceutical drug called Factor VIII, used to treat the blood-clotting disorder haemophilia. These products were made by mixing tens of thousands of blood plasma donations without necessary safety steps, such as a heat treatment that kills viruses.
Much of the Factor VIII used in the UK during the 1980s came from the US, where plasma donors were paid – and often fell into high-risk groups. Plasma used to make Factor VIII was also purchased from third-world countries.
Startling facts like these led the chair of the Infected Blood Inquiry, Sir Brian Langstaff, to conclude in his interim report, published recently, that wrongs were done on ‘individual, collective and systemic levels’.
Myself, other campaigners, politicians and lawyers fought tooth and nail to get this inquiry to happen. I’ve devoted the last five years to reading all the evidence, formulating questions for witnesses, lobbying Parliament, conducting research and updating the wider community.
I was spurred into campaigning in 2015, after a Scottish inquiry concluded that little could or should have been done differently. I knew I would never begin to get over what happened unless I did something and found out the full facts.
I set up a campaign group, Factor 8, and began to connect with others infected and affected by the scandal.
Over the years, we’ve made a lot of progress in launching a group legal action – fighting for an inquiry and securing the compensation framework.
I faced many closed doors: people who thought this was just a conspiracy theory, community in-fighting and countless lawyers who said we had no chance.
Eventually, one man finally believed in us, Des Collins of Collins Solicitors. Collins lodged a group legal action with the high court in July 2017. Paired with political campaigning and media efforts, one week later, we got our inquiry.
Twenty-five years after my dad’s life was cut short, the inquiry was announced by Theresa May. It’s expected to publish the final report this autumn.
But, so damning is the evidence the inquiry has seen, that Sir Brian has been able to recommend compensation as soon as possible ahead of his final report.
The inquiry’s final report will no doubt bear the full details of the wrongs that were done – but knowing it has already reached that conclusion felt overwhelming.
The truth is going to come out after all these years.
Still, it’s all something that should never have been necessary.
If only the manufacturers of Factor VIII had heated their products, a process that kills viruses including HIV, the scandal may never have happened, and my dad could still be alive.
The inquiry has heard evidence that this has been done with other blood products, such as Albumin, since the 1940s but not initially with Factor VIII.
As director of Factor 8, I’ve sat through every hearing since the inquiry began. Sir Brian’s report is the first time I’ve felt that someone in power gets it.
What happened to my dad and all those people was wrong – not an accident and certainly not ‘incredibly bad luck’, as former PM John Major told the inquiry last year.
Sir Brian made no bones explaining why he was making his final recommendations on compensation now; those harmed have already waited far too long.
One of the report’s key recommendations is to provide interim compensation payments to bereaved families who have not received anything, such as parents who lost their young children to HIV.
However, we’ve yet to see any action by the government even though, in a holding statement, Paymaster General Jeremy Quin acknowledged time without redress causes further harm.
The failures of the Windrush Compensation Scheme and the Post Office compensation scheme should serve as a warning to the government.
The Windrush compensation scheme, which was set up to compensate those who have suffered loss in connection with being unable to demonstrate their lawful status in the United Kingdom, has been heavily criticised for its slow and bureaucratic process.
Many Windrush victims are still waiting for compensation, even four years after the scheme was announced – some died before their claims were dealt with.
Similarly, the Post Office compensation scheme, which was set up to compensate sub-postmasters who were wrongly accused of theft and fraud, has also been criticised for much the same.
It is imperative that the government learns from these mistakes and avoid the same failures. Appointing a judge to chair the infected blood compensation system is the most critical step in ensuring this happens.
Sir Brian has recommended an operational compensation system should be set up before the final report in autumn.
If the government fails to implement the recommendations of the inquiry, the public will have even less trust in the ability of the government to address the wrongs of the state.
My greatest hope is that it was worth it and that all those harmed get the full truth and proper redress.
My family went through hell because of what was done to my dad. My mum has suffered tremendously because of it; she has also watched most of the inquiry hearings, often in tears.
Seeing her relive it all again and learn such disturbing information isn’t easy.
Families like mine have waited long enough for justice. The delay in redress exacerbates the trauma and suffering.
The mental, as well as physical, health toll of the scandal cannot be overstated.
I often think about how different my life, my dad’s life and the lives of many others would have been so radically different if this hadn’t happened. I would never have searched for HIV and infected blood products in my first IT lesson or spent years campaigning, that’s for sure.
Maybe I’d have just looked up DMX, whose music I was obsessed with, then gone home and told my dad ‘school was boring’.
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