Activists who fought for justice but didn’t live to see it

It was February 2017 when the message arrived on Facebook. “There is a much bigger scandal you need to investigate,” it reads. “Thousands of people have died and no one talks about it.”

It was the first time I heard Su Gorman and Steve Dymond. I was working on a story about treatments for hepatitis C. But they wanted me to go to Ramsgate, Kent, to meet them about something else.

A few days later, a heavy bundle of A4 papers arrived: handwritten notes, photocopies of old documents, press clippings from the Kent Messenger newspaper.

I quickly learned that Su was not someone you could easily argue with – or push away with an excuse.

She had met Steve at Exeter University in the mid-1970s, where they were both studying Russian. They married on October 25, 1980, the anniversary of the Bolshevik Revolution, as Su liked to point out.

Steve was born with a mild form of hemophilia, a bleeding disorder. He didn’t really need a new type of treatment, called factor VIII, but he was given it anyway.

We now know that entire batches of blood products, resulting from pooled or mixed donations, often from the United States, have been contaminated by deadly viruses.

Much of the blood came from high-risk donors, such as inmates and drug addicts. If just one was carrying the virus, the entire batch could be contaminated.

I read the packet of documents and then took a train to the Kent coast, where Su and Steve lived in a small bungalow, not far from the seafront.

It was the first of half a dozen trips over the next several years, as I – and other journalists – continued to report on what would become a national scandal.

Steve first learned something was wrong in 1983.

His local hospital called him and warned him that he may have been exposed to HIV, or HTLV-3 as it was first called. At the time, there was no rapid test. The couple had to wait 18 long months before getting the green light.

“It was an absolutely terrifying time,” Su told me, a time when “fear and panic” around AIDS was just beginning to emerge. Su and Steve postponed having children, something they both deeply regretted later in life.

But HIV wasn’t the only virus hidden in factor VIII.

By the late 1970s, the existence of hepatitis C was known to scientists, although the virus itself was not formally identified until 1989.

Hepatitis C affects people in different ways. Some infected people fight off the virus immediately and no longer have symptoms. In others, it can linger in the body for years – even decades – before it begins to damage the liver, causing cirrhosis and cancer.

In 1994, Su and Steve were living and working in France and trying to have a baby. When Steve learned he had hepatitis C, they were quickly taken off their IVF program.

“Within 24 hours, we found out that we would never have children and that he was going to die prematurely,” Su said. They returned to England.

Steve worked as a teacher, Su as a social worker. But Steve began to develop symptoms of a chronic hepatitis C infection: he had difficulty concentrating and suffered from brain fog.

“He was often in a bad mood and would get angry for no reason,” Su said. “We called Hepatitis C ‘Mr Grumpy’. He was the guest who came to stay.”

For almost a year, Steve received a debilitating treatment, interferon, to try to eliminate the virus from his body. Its success rate was less than 50%. It didn’t work for Steve.

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By then, Su and Steve had slowly begun to make contact with others in the same situation, including two other haemophiliacs, Andy Evans and Gareth Lewis, who went on to set up a pressure group called Tainted Blood, in 2006 .

“Pretty soon we had to take on more of a campaigning role,” says Andy, who was infected with both hepatitis C and HIV as a child.

Soon there was a need for an official organization with sufficient membership to challenge the then Labor government’s decision not to hold a public inquiry into the scandal. Tainted Blood – or TB – quickly recruited 500 members.

It now has more than 1,800.

Su was a whirlwind of energy, often calling reporters like me and demanding to know why we hadn’t covered the latest developments in more detail. She was smart, angry and driven. Steve was calm, measured and very funny.

In 2014, they were getting more and more involved in campaigns.

Su had contacts handy. If she didn’t know the answer to a question, she could connect you with someone who did within minutes.

She often used a combination of charm and intense intimidation to convince more reluctant members of the community to speak out in print or on television.

“She was an absolute force of nature,” says Andy. “She took on everything as if it was her personal duty to do so.”

After years of campaigning and setbacks, in July 2017, then-Prime Minister Theresa May finally announced a UK-wide public inquiry into the infected blood scandal.

Su and other activists were elated, but viewed the decision as a political one.

The Conservative government has just lost its majority in the House of Commons and needs the support of the Democratic Unionist Party of Northern Ireland, which supports an investigation.

The news came as Steve’s health began to rapidly decline.

He had a tumor removed from his liver and varicose veins formed in the wall of his stomach, both direct consequences of the hepatitis C he had been infected with.

He was upbeat but in pain when I visited him in the specialist liver unit at Kings College Hospital in London.

He was, however, determined to see the investigation begin and that day – September 28, 2018 – he appeared live on the BBC alongside Su and a panel of guests.

It was a “bittersweet moment,” he said. He said he hoped the investigation would have the “courage and bravery” needed to uncover the truth.

But he was clearly in trouble. And when we had coffee after the show, it was obvious that Su was worried.

A few months later, just before Christmas, she texted me out of the blue to say he had been rushed to the hospital with a “bleeding intestine.”

Steve died on December 23, 2018, aged 62, from organ failure – ultimately caused by the treatment he was given as a young man.

“He knew I was there and he told me, ‘I love you,’” Su said. “Then at one in the morning, while he was holding my hand, he left me.”

Steve was buried in the couple’s favorite spot, overlooking Dartmoor National Park in Devon. The cause of his death was given as liver failure, cirrhosis and “hepatitis C infection contracted from a contaminated blood product.”

He is one of around 350 hemophiliacs who, according to the investigation, lost their lives to hepatitis C as part of this scandal. A further 1,640 NHS patients are thought to have died from the disease after receiving a transfusion of contaminated blood.

In the months following Steve’s death, Su didn’t shy away from campaigning. She was a regular at the inquiry which began taking testimony, hearing from infected people as well as doctors, health officials and government ministers of the day.

She testified herself in June 2019 and was allowed to play part of an interview I filmed with Steve before his death.

In it he said: “I want to try to understand how so many warnings, dating back to the 1950s, were ignored, and how a government can put such a grave risk on a small, vulnerable part of its community. »

“And for those responsible,” he added. “I wish they would never sleep another night.”

I last saw Su at the end of July 2023, in central London.

We ate pizza with a colleague while waiting for Chancellor Jeremy Hunt to give evidence to the financial compensation inquiry.

A month later a friend of hers called me to say she had been found in her static home in Devon. She collapsed and died, aged 68, of heart failure.

Almost six years after it opened, the public inquiry into what has been called the worst treatment disaster in the history of the NHS will publish its findings on Monday.

Neither Su nor Steve will be able to read the results.

“They should both be here to see this. And I’m desperately sad that they’re not,” says Andy Evans. “We have lost so many brilliant people, all of whom contributed so much to the fight.”

The government called the scandal “an appalling tragedy that should never have happened.” More details on a final compensation plan for all those affected are expected to be announced later this week.

Jim Reed meets with the families of some children with bleeding disorders and HIV infection to discuss their campaign for justice and what they hope for from the inquest.