“Bye-bye Daddy, I’ll miss you.” Those were the last words I uttered to my father, as I placed a single rose on his coffin. I was four years old.
My dad, Jonathan Evans, died of AIDS in 1993. He had contracted HIV and hepatitis C from a contaminated blood product called Factor VIII, which was given to people across the UK in the 1970s and 1980s to treat a manageable blood disorder called haemophilia.
In the UK, 3,000 to 5,000 people with haemophilia were infected with hepatitis C through Factor VIII during this time. Like my father, 1,243 of them were also infected with HIV. Worldwide, tens of thousands of others contracted these deadly viruses after receiving this “treatment”. Many lost their lives due to long-term damage caused by hepatitis C, or, like my father, after the HIV introduced to their system led to AIDS.
My father’s untimely death devastated our family. I spent most of my life slowly learning about the horrors he had been put through, and trying to find some justice for him and thousands of others like him whose lives were destroyed by Factor VIII.
Finally, in 2017, following widespread campaigning, the British government agreed to hold a public inquiry into the biggest treatment disaster in the history of the National Health Service (NHS).
But why did it take so long? Why did we have to wait 30 years to get answers to our questions?
Everything we learned so far points to officials trying to cover their backs, and successive governments not wanting to foot the compensation bill that would inevitably follow any serious investigation.
To make Factor VIII, manufacturers around the world – mostly US pharmaceutical behemoths but also other big companies in Europe and beyond – used vast amounts of pooled blood plasma. This involved harvesting tens of thousands of plasma samples from prisons and other high-risk donor populations and mixing them together.
In the 1970s, Factor VIII started to be marketed worldwide as a wonder drug in the treatment of haemophilia. But unbeknown to many, the manufacturers had rushed to market, skipping a crucial safety step.
Blood-based drugs like Factor VIII need to be “heat-treated” to ensure they do not carry viruses in them. The industry knew this long before the invention of Factor VIII. Since the 1950s, another blood product, albumin, which is used to treat burns, has been heat-treated with the specific aim of killing hepatitis.
But heat-treating a product can be both time-consuming and financially costly. If an appropriate stabiliser is not used during the process, the heat can destroy not only harmful viruses but also the sensitive blood clotting proteins that are essential to the treatment.
So, instead of investing in research to find a stabiliser for Factor VIII, manufacturers decided to skip this step. They released their products to the market without any viral treatment step whatsoever. And by doing so, transformed their wonder drug into a ticking time bomb.
Due to the massive plasma mix used to make the product, every single patient who received Factor VIII was exposed to hepatitis C upon first use.
Left untreated, hepatitis C slowly destroys the liver, eventually causing deadly diseases like cirrhosis and liver cancer. Most people do not show any symptoms for years and even decades after contracting the virus. As the manufacturers of Factor VIII, and government and health officials who were well aware of the product’s risks, did not warn patients or ask them to get tested, countless people with haemophilia who received the treatment from the 1970s onwards didn’t learn that they have been infected with hepatitis C for years – in many cases, until it was too late.
And in the early 1980s, a new threat entered the blood supply: HIV. By 1981-1982, it was already suspected that a virus caused AIDS. By 1983, it was almost certain. But despite this knowledge, and a rapidly growing, deadly pandemic, nothing was done to protect the haemophilia community. Factor VIII continued to be produced without any heat treatment and given to people with haemophilia across the world.
There were some in the healthcare community trying to raise the alarm.
In early 1983, blood product decision-makers gathered in Atlanta, US to discuss AIDS. Don Francis, former director of the Centers for Disease Control and Prevention (CDC), famously banged his fist on the table at the meeting and asked, “How many dead haemophiliacs do you need? How many people have to die to make it cost-efficient for you people to do something about it?” His words would prove prophetic.
Similar alarm bells were ringing in the UK, where the country’s most senior epidemiologist, Dr Spence Galbraith, wrote to the Department of Health asking for Factor VIII made in the US to be withdrawn from use.
While all this was happening behind closed doors, however, my father and his haemophiliac friends were blissfully unaware of their impending doom.
Despite pleas from experts, the virus-ridden, untreated blood product continued to be given to haemophilia patients in many countries throughout 1985.
As the scale of infections became clear from 1985 onwards, states started to respond. In France, criminal prosecutions resulted in prison sentences for health officials involved. Criminal investigations also took place in Canada. But there was no investigation in the UK. And no one was held accountable.
My dad was angry when he found out he’d been infected with HIV. Alongside other haemophiliacs who had been victimised and their families, he rallied the authorities for action, but he never received a response in his lifetime.
Part of the problem was the stigma attached to AIDS in the 1980s. Those infected with HIV found themselves not just physically ill, but also socially outcast.
Neighbours and once close friends shunned families like mine because AIDS was seen as the “gay plague”. My mother was fired from her bakery job because her boss thought she was a risk to staff and customers, even though she wasn’t infected. Many died in silence, scared to reveal what had happened to them for fear of ostracism.
The authorities in the UK gravely failed the haemophilia community, and then took advantage of the stigma attached to AIDS to avoid any responsibility for decades.
The saddest part is that none of this had to happen. The entire tragedy was completely avoidable.
Manufacturers could have heat-treated Factor VIII against viruses. Health authorities and governments could have acknowledged the contamination risk and banned the product early on – long before the emergence of HIV. After all, they did exactly that in several countries. In Finland, for example, they banned Factor VIII from the get-go specifically because of the high hepatitis C risk it carried. As a result, there were virtually no cases of haemophiliacs being infected with HIV there.
In the UK, the authorities not only failed to acknowledge the risks of Factor VIII and protect the haemophilia community from an unsafe product, but they also maintained for decades that they had done nothing wrong and that nothing could have been done differently.
This is why the ongoing inquiry into the scandal is so valuable to people victimised by Factor VIII and their families. Even if it is 30 years too late, some authorities are finally speaking the truth and owning up to their mistakes.
Of course, nothing will bring back my father or erase the decades of suffering we had to endure. And some still appear determined to deny responsibility for the scandal – we were all stunned to hear former British Prime Minister Sir John Major claim to the inquiry last week that what happened was “bad luck” and “random”.
But I am still hopeful. Compensation appears to be on the horizon for victims and families. And even more importantly, there is a chance that the government is finally ready to accept its historic failures and learn from its mistakes.
The views expressed in this article are the author’s own and do not necessarily reflect Al Jazeera’s editorial stance.