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Blood contamination scandal victim, Steve Dymond, lives in 'state of uncertainty and fear' Steve's story

The blood contamination scandal has left a stain on the nation - a shocking health blunder which condemned thousands to a painful death.

But just why is it so significant and why have so many people in Kent been infected and affected?

Haemophilia has, for centuries, been an affliction which has been difficult to treat. The hereditary condition sees sufferers not have the ability for their blood to naturally clot sufficiently. This means when they bleed it is difficult for them to stop - with the obvious potential dangers.

A doctor looking at a blood sample
A doctor looking at a blood sample

Back in the 1970s drug companies developed a method of extracting the clotting agents from plasma in blood which could then be turned into a treatment to give haemophiliacs. Most commonly known as Factor VIII, this would provide temporary relief and allow the blood to clot.

Such was the demand, during the 70s and 80s, those companies sought vast quantities of blood to manufacture the treatment. In doing so, they would source it from a variety of places. Notably, and particularly in the US, they paid prisoners and even drug addicts to donate.

The result was some of the blood extracted included HIV, which can lead to Aids, and hepatitis C, a disease which affects the liver and can be fatal.

All mixed together and ordered by the Department of Health to treat haemophiliacs, many would go on to find themselves infected, unknowingly, by the illnesses.

Blood samples
Blood samples

With the stigma around HIV and Aids in the 1980s, many were diagnosed with an effective death sentence or had inadvertently passed it on to loved ones. Others would find their lives forever altered by the health conditions they were infected with.

It is estimated around 4,600 people, primarily haemophiliacs, were infected with hepatitis C and around 1,200 of which also received HIV in the blood. Some 2,400 of the victims have since died.

Some campaigners say there is evidence to suggest the Department of Health knew of the dangers of Factor VIII long before it banned any non-heat treated blood products when Aids started to spread. Others, that the delay in agreeing to a fresh inquiry was in order for as many of the victims to have died before any compensation agreement might be reached. The DoH denies all the claims.

Yet the truth remains that thousands were infected, many as children, with life-threatening illnesses through no fault of their own.

Former health minister, and now Manchester mayor, Andy Burnham, described it as a "criminal cover-up on an industrial scale" as he played a pivotal role in the public inquiry finally being delivered.

Only in recent years - first by David Cameron and then Theresa May - has the Government apologised to the victims. Payments to those caught up in the scandal have been paltry and paid through means-tested charitable trusts.

The Archer Report, of 2007, was an independent inquiry which had no power to demand the disclosure of documents or the appearance of key figures before it. It did, however, reveal key documents related to the issue had been destroyed during the mid-1990s, prompting its claims of "an exercise in suppressing evidence of negligence or misconduct".

The public inquiry, prompted by a major push by campaigners, supported by politicians and many sections of the media, opened last month and resumes in April.

One of those victims was Steve Dymond from Broadstairs. A mild haemophiliac, he was infected and contracted hepatitis C which would eventually lead to cancer.

In a special article for the KM Group, he looks at the impact the scandal has had on his life.

"On September 24, the first full UK-wide public inquiry into the contaminated blood scandal, chaired by Sir Brian Langstaff, opened officially in The Church House in London.

In his opening statement, the retired judge assured those present that his inquiry will be frightened of no one and that those infected and affected would be placed at its heart.

It was also an occasion to remember those who have died including the almost 3,000 haemophiliacs infected by contaminated blood products (known as Factor VIII or IX) with viruses including HIV/Aids, hepatitis B and hepatitis C.

Steve Dymond who was affected by the blood transfusion scandal
Steve Dymond who was affected by the blood transfusion scandal

All of which have irrevocably damaged the health of an entire generation of UK haemophiliacs who received routine NHS treatments in the 1970s and 80s.

The hundreds present, the bereaved and walking wounded, came from across the country. We met surviving victims from across Kent - Ramsgate, Whitstable, Maidstone and Ashford.

That the inquiry has taken well over 30 years to be established and was only conceded as the result of Parliamentary pressure on Theresa May after she lost her majority, leaves a bitter sweet taste.

After so many decades we had questions, rather than hopes or expectations.

Will the inquiry have the tenacity to answer the very simple question “why?”

Will it have the courage to hold those responsible to account?

Or as Jason Wade, a haemophiliac and victim of this scandal now buried in Margate implored his brother Ade days before he died to get the people who did this.

Jason died on September 28, 1997 at 3.16 am. He was just 28.

"The retired judge assured those present that his inquiry will be frightened of no one..." Steve Dymond

The inquiry, it is suggested, will take between two to four years to reach its conclusions.

Another question Sir Brian referred to in his opening statements is how many of we, the primary victims, will be alive to see the final report and its recommendations?

Already more than 70 haemophiliacs have died since the announcement of this inquiry last July.

What can be expected of the concluding report? A question I contemplate with some trepidation.

If the inquiry delves deep enough and reveals the full scope of this appalling scandal, exposing the betrayals and lies the haemophiliac community have endured for decades, it will cause even more distress.

Steve Dymond and his wife Su Gorman
Steve Dymond and his wife Su Gorman

Meanwhile, day to day, I live in a state of uncertainty and fear.

Hepatitis C is a blood borne virus which attacks the liver causing, eventually, cirrhosis and cancer. Until August 2015 there was no effective treatment. Then a new effective treatment was made available selectively. If I still received my specialist treatment at our local hospital, I would not have had access to this treatment.

Having previously felt obliged to transfer my care to London my hepatitis C was eradicated after a three-month course of anti-viral drugs.

But having been infected through contaminated Factor VIII, almost certainly on multiple occasions and decades ago, the complications for my health are considerable and life-long.

At the end of the treatment, liver cancer was diagnosed.

"Day to day, I live in a state of uncertainty and fear..." Steve Dymond

Although it was successfully treated, I now live under the shadow of it returning and then facing the prospect of a transplant.

One consequence of cirrhosis is portal hypertension which causes massive internal bleeding and for a haemophiliac results in vomiting copious amounts of blood.

On the last occasion in June after a fortnight as an in-patient at Margate’s QEQM Hospital, I almost became part of the statistic of those who haven’t lived to see the opening of the inquiry.

One of the rare side effects of the new anti-virals is neural sensory hearing loss. I am now slowly and irrevocably losing my hearing.

One of the consequences of portal hypertension has been severe anaemia.

"After a fortnight as an in-patient at Margate’s QEQM Hospital, I almost became part of the statistic of those who haven’t lived to see the opening of the inquiry."
"After a fortnight as an in-patient at Margate’s QEQM Hospital, I almost became part of the statistic of those who haven’t lived to see the opening of the inquiry."

We made it to London on the 24th to listen to the two opening statements.

My wife of 40 years has been with me every step of the way. We have been active campaigners since 2015.

Because of my health care problems, we have been unable to participate in the run up to the opening of the inquiry as planned. We missed important meetings and could not remain for the second and third day to hear all the opening statements.

It has been announced that the hearings will resume on April 30, 2019.

The one consolation with this further delay is I can hope to have recovered enough health and strength to participate fully.

We have to believe that I will still be amongst the survivors, along with Jason’s brother Ade, and others in the infected community from across the county, many of whom we have never met.

And that we will still be there when a brother’s promise is finally kept."

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