Blackburn man's tainted blood hell (From Lancashire Telegraph)
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Blackburn man's tainted blood hell
12:00pm Friday 5th November 2010 in Blackburn
INFECTED: Haemophiliac ‘John Smith’ contracted HIV during a blood transfusion
A HAEMOPHILIAC infected with HIV in the ‘Tainted Blood’ scandal has condemned the Government’s decision not to give victims more compensation.
John Smith (not his real name) was one of 4,670 people infected with Hepatitis C, and one of 1,243 within that group also infected with HIV, when given contaminated blood in the 1970s and 1980s.
The 56-year-old, from Blackburn, suffers from haemophilia, a rare inherited disorder, which means blood does not clot properly, leading to recurrent bleeding.
To prevent this, sufferers rely on injections of anti-coagulants, previously made from donated blood plasma.
In the USA, selling blood from prisoners was permitted until 1984, and the British Government bought blood from American inmates to give to haemophiliacs and blood transfusion patients.
Described by Lord Winston as ‘the worst treatment disaster in the history of the NHS’, this decision has so far led to almost 2,000 deaths.
John said: “I was offered the chance to take this ‘superb new treatment’, that was far more convenient than going to hospital because it could be administered at home. But nobody told us about the side effects.
“It decimated an entire generation of haemophiliacs. It was genocide.”
In 1987, John was given a life expectancy of just five years.
He said: “I was very angry, and as a dad of two young children, frightened for their future.
“It was also the stigma attached to HIV. Families were chased out of their homes, ‘AIDS’ scrawled on walls, children forced to leave schools.
“The Government benefited from this, because they knew victims wouldn't go public.
“I could only tell close friends and relatives.”
John had to give up work as a machinist, in case he cut himself in the factory.
“I retired from work to try and live the last five years as best I could,” he said.
“We couldn’t get a mortgage, we couldn’t get life insurance and we couldn’t get travel insurance.
John’s health declined, but he confounded doctors’ expectations.
The father-of-two was diagnosed with AIDS in 2000, and is now on medication to control his condition.
He said: “There were people dying at a rate of one a month at one point. It is pure luck that I am alive today.”
In the Republic of Ireland, those infected with Hepatitis C were awarded an average of £350,000 each, after a public inquiry in 1991.
Victims in Britain were offered as little as £25,000, but only on the proviso they dropped any future claim against the Government.
John said he reluctantly accepted an offer of £60,000 because he needed to support his family.
This month ministers turned down another plea for compensation, claiming it was not affordable, as it would cost more than £3billion.
John said: “We've been let down by every Government since the 1980s.
“They have never admitted liability and never offered full compensation.”
Comments(19)
CampaignTB
says...
1:37pm Fri 5 Nov 10
JoshuaJ
says...
2:08pm Fri 5 Nov 10
To-date, after nearly 30 years of campaigning for justice, we await the result of yet another government review.
Once again thank you Neil.
Kenwright
says...
2:50pm Fri 5 Nov 10
I am also a haemophiliac infected with several blood born viruses as a direct result of filthy NHS treatment that we were told was safe.
It is as simple as this.
As you say the government were fortunate in two ways, firstly these infections were not something the victims that this government murdered did not want to go public because of the devastating affect public knowledge would have on the victim and their families.
Secondly if 2000 haemophiliacs had died within say a month of infection then the whole country would have been outraged and it would have been major media headlines worldwide and the government would as you say been accuses of genocide, they have killed over 2000 of the UK haemophiliacs and left another 3000/ 4000 to contemplate the same horrendous end to their lives.
But because these victims have daied over a period of 15/20 years nobody has notices and the government did a very good job of covering up this slaughter.
Destroying crucial document, refusing to hold a public inquiry into how this happened.
This government has been very fortunate in the way these killer viruses acted and the time it was to take.
Imagine if the media reported
“2000 HAEMOPHILIACS DEAD IN ONE MONTH AS A RESULT OF INFECTED NHS TREATMENT”
It would have been a different story.
It is time this perverse government woke up and realised that a government department murdered over 2000 human beings,
useyourhead
says...
3:35pm Fri 5 Nov 10
-
that said, they were actually born with one, in haemophilia and many have probably had a longer life already than they would have had pre NHS.
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A very double edged sword really, do the majority of them still accept NHS treatment?
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how much compensation could ever be enough?
Slimplynth
says...
4:22pm Fri 5 Nov 10
JoshuaJ
says...
4:31pm Fri 5 Nov 10
Modern NHS treatments are now quite safe due to the relatively cheap and simple process of heat treating.
'John Smith'.
Sue Threakall
says...
5:20pm Fri 5 Nov 10
I would also like to correct the misunderstanding by the contributer called 'useyourhead'. We can conclusively prove with documents and letters that the UK Haemophilia Centre Directors sought out Previously Untreated Patients (PUPS) in the haemophilia community to test their produts on. By default these were mild haemophiliacs who rarely - if ever - need treatment, and babies/young children who had never been treated with commercial products. The youngest in one study was five months old. My late husband was a severe haemophiliac but he was well into his thirties, in full time work, perfectly ok and the father of three children when his treatment was changed from the much safer UK treatments previously used, to imported Factor VIII which was made from plasma collected from prisoners, skid-row people, etc who were happy to sell their blood. He died in 1991 with HIV, Hepatitis B and Hepatitis C.
We were warned over and over again not to use these products but because our Government would not invest in a clean, safe, UK blood supply, and because it was happy to condone experiments on the weakest and most vulnerable members of our society, this was the result. People are living in poverty, widows have had to sell their homes. Children look to the sky each night because they believe, as my son did, that their daddies are now stars.
If this number of people died in a plane crash or a train accident, there would be outrage, an inquest and compensation. No such luxury for the haemophiliacs who have to put up with being treated with utter disdain and contempt by the British Government.
We really thought that this Government was different and that they would sort it out, but at the moment they seem hell bent on just pushing us to one side with yet another tiny ex-gratia payment. No apology - that sticks in their throats. No proper compensation. No closure. It's a national disgrace and should have been dealt with twenty years ago.
Dynamodoris
says...
5:54pm Fri 5 Nov 10
I believe I am one of the PUPS described by Sue. I received Heatitis C as a result and have had two liver transplants because of the Hepatitis C given to me when I didn't have to have this new blood product . You could rightfully suggest that I have benefited from the NHS by having my transplants. This is correct but rather misses the point. This disaster should not have happened. The loss of life is equivalent to the loss of life on Titanic, plus Piper Alpha, plus Heysel, plus Ladbroke Grove, plus the Marshioness. This truely is a disaster of mamouth proportions and it is time that the Government ease the suffering of all of those affected bu paying up. We can then lead what is left of our much shortened lives without having to worry financially.
Mike
p.s. Sue's comments above regarding 'We were warned' means 'We' as a country as it was the authorities who received the warnings not the patients.
Kenwright
says...
7:12pm Fri 5 Nov 10
It is a government myth that all haemophiliacs would have died at an early age as a result of untreated haemophilia.
I was in my mid twenties before I ever received any kind of NHS clotting factor.
I held down employment firstly as a welder building HGV vehicles, I then went on into the printing industry where I was in charge of multi million pound printing machines, every day I came into contact with sharp objects and on several occasions suffered cuts and injuries requiring stitches, none of these were a problem for me and I held down this job to work my way to the position of print manager.
I loved working for a living and enjoyed every hour.
It was as a direct result of the infections from NHS treatment that caused me to give up my employment, NOT my haemophilia.
By the way useyourhead, I have
severe haemophilia.
No one can ever appreciate the suffering, pain, financial devastation, and death the haemophilia community of the UK has suffered at the hands of a uncaring perverse government,
Remember useyourhead, while MPs were fiddling their expenses to add a few extra pounds to their vulgar salaries, human beings were dying as a result of dirty NHS treatment, treatment that was known to be of very high risk of infection to those in the know, but this high risk was never revealed to those having this **** pumped into their veins.
But no doubt this government will stay with tradition and continue to cover up the scale of this slaughter.
martintheaker
says...
9:26pm Fri 5 Nov 10
I was infected with the liver-damaging Hepatitis ‘C’ virus over twenty years ago after I was given the contaminated blood products used to treat my haemophilia. Rightly, it has been described as ‘The worst treatment disaster in the history of the NHS’
The Haemophilia Society is fighting for the government to properly recognise the impact the illness has had on our lives – many haemophiliacs refer to the virus as a “death sentence”.
I am a 46 year old father of 3 and I contracted Hepatitis C through a clotting agent product given to me via Manchester Royal Infirmary and Blackburn Royal Infirmary.
There is nothing the doctors can do to treat the disease, which slowly scars the liver of sufferers and eventually leads to cirrhosis and potentially liver cancer. Patients who face the search for a liver transplant could die within 12 months.
The illness has had a multitude of other effects on my life.
Life insurance is impossible to afford – even if you can get an insurer to cover you, travel insurance is loaded up, I have to carry numerous tablets and injections with me wherever I go. On top of all this and most frighteningly and worryingly of all is that you have a constant awareness each day that the virus could become more active and take an irreversible stranglehold on your life. If that happens, my life goes, my job goes, my income goes and ultimately my family would be left without any financial security whatsoever.
Haemophiliacs and their families must speak now and gather support from MP’s to support the all the actions put forward by Lord Morris in the House of Lords recently; otherwise the fear is that we will die through no fault of our own and leave nothing for our families who have suffered alongside us.
Dynamodoris
says...
10:17pm Fri 5 Nov 10
I believe I am one of the PUPS described by Sue. I received Heatitis C as a result and have had two liver transplants because of the Hepatitis C given to me when I didn't have to have this new blood product . You could rightfully suggest that I have benefited from the NHS by having my transplants. This is correct but rather misses the point. This disaster should not have happened. The loss of life is equivalent to the loss of life on Titanic, plus Piper Alpha, plus Heysel, plus Ladbroke Grove, plus the Marshioness. This truely is a disaster of mamouth proportions and it is time that the Government ease the suffering of all of those affected bu paying up. We can then lead what is left of our much shortened lives without having to worry financially.
Mike
p.s. Sue's comments above regarding 'We were warned' means 'We' as a country as it was the authorities who received the warnings not the patients.
useyourhead
says...
10:42pm Fri 5 Nov 10
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please be assured i was not trying to be flippant about this subject, merely expressing how complicated an issue it is, I hope that by getting people talking about it, as on here, you get a fairer outcome.
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I remember when this happened and how phobic the country was regarding HIV at the time, like many others I thought that this had been resolved decades ago and had little idea how unfairly the victims have been treated.
Slimplynth
says...
10:27am Sat 6 Nov 10
http://en.wikipedia.
org/wiki/Contaminate
d_haemophilia_blood_
products
you shouldn't believe everything you see on the net but I was under the impression that it wasn't just haemophiliacs that had been dealt the same deadly blow. If you're a conspiracy theorist you'll probably make a connection with Henry Kissenger's depopulation strategy.
I'm not bothered with that, what I want to know is... If I buy a Toyota and the brakes fail causing injuries including paralysis - who'd foot the bill for my care/treatment? Toyota or Toyota's insurer? Either way the NHS bought tainted product.. was it bought with a clause in the contract that said "this product may contain traces of life threatening pathogens taken from inmates in American penal facilities".
So, who reviewed and stamped the purchase order/contract?
The Americans were completely irresponsible using the prison population for bio-products.
Biology is tricky, I know this because I have a Genetics degree ( third class hons from Leeds :0) poor i know but I did learn some things).. Like, if you were unlucky enough to receive the first polio vaccines in this country (1950's); you were also exposed to a vaccine containing a monkey virus called SV-40.. bad for monkey's but harmless (they thought) to humans (certainly considered less harmful than the polio virus at the time).
Unfortunately, despite warnings of mass production of the SV-40 tainted vaccine, immunisation was rolled out globally. SV-40 was later shown to be capable of triggering cell mutations/cancers in human tissue (in vitro - in a test tube) not the same as in vivo but live hamsters infected with the same virus developed tumours - does this mean humans would develop the same? (hmmm)
That was a long time ago and who knows if anyone did actually develop a cancer directly linked to that vaccine?
The ability to detect the problem was developed after the first fix (the vaccine) against a deadly/hugely harmful pathogen. Much like the infected blood plasma.
But as posters above have highlighted, they weren't facing an immediately life threatening disease. The companies who SOLD the contaminated plasma should be footing the bill, the UK government should be chasing payment through the courts or cough up the cash instead of? Well I think they should.
Slimplynth
says...
10:32am Sat 6 Nov 10
ation.org/CPV-link.h
tml
I guess these things are too complex for the majority to follow, so they tend to go unmentioned for decades..
BSE/CJD went quiet, caused by intensive farming and inbreeding practises?
Ultimately, it's all about money!
Kenwright
says...
1:20pm Sat 6 Nov 10
I have haemophilia and infected with viruses that came fro American blood products imported by the NHS and government.
Many haemophiliacs did just what you suggest, we went after the American Pharmaceuticals who produced this poison.
After around 5 years battling those infected with HIV were offered around £25,000 and those infected with hepatitis C were offered around £5000 this was a final settlement and the condition was that we sign a waver that had a gagging clause preventing us from informing the media of this settlement, but even worse was that the waver also contained a clause preventing us from taking any kind of action against these companies for any and all future products that these companies produce to treat haemophilia.
Basically these companies could produce any kind of sh-t do all kind of damage and those victims and litigation would not be possible because of the waver those accepting these payment had to sign to get these pitiful payments.
If you did not sign the waver you will receive nothing and your case would end as the pharmaceutical companies gat well lawyer’d up and demanded that the victims would now have to prove the date of infection, the exact product that infected us and the exact batch numbers. An impossible task as the UK treating clinicians kept very poor treatment records and in most cases the batch numbers were not recorded.
By the way the American pharmaceutical companies involved were.
Bayer Corporation and its Cutter Biological Division, Armour Pharmaceutical Company, Baxter Healthcare Corporation and its Hyland Pharmaceutical division and Alpha Therapeutic Corporation.
And to top this.
Ex president Bill Clinton while governor of Arkansas, had the US prison that was running a blood collection program right in his backyard, the Cummings Correctional Facility, this prison was collecting donor blood from prisoners known to be infected with all the viruses we are now infected with, but documents were forged and falsified so those prisoners would not be excluded from donating.
See Kelly Duda Film.
So as you can see all attempts to bring the US companies to answer met all kinds of problems and the US judge, reuses us a class action he then refuses our cases to be fought in the US and ordered them to be fought in the UK as he felt the justice system here was good enough, WHAT A JOKE.
Slimplynth
says...
2:57pm Sun 7 Nov 10
Thanks for sharing that info, it's a disgrace. You couldn't make it up could you... Those companies will have made hundreds of millions/billions from selling poison.
They are then free to use the profits to blunder their way to the next big sell. A misuse of science and the authorities wonder why people get iffy about immunisations.
Obviously not the same but I was born with mild cerebral palsy, it's only really affected one leg. When I asked the doctor for access to my medical records (because I'm inquisitive and want to know what happened - not make a claim) I was told all records from '79 were null and void.
So your comment about batch numbers missing/not recorded etc does't really surprise me at all.
Proving date of infection pah! proving batch numbers pah! My blood boiled when I read that.. what a horrible, sneaky trick.
If I were thinking outside the box I'd be thinking of making an argument involving numbers. The 2000+ people getting infected with the same set of multiple viruses obviously not enough in court.
There'll be no batches of the plasma in cold storage to compare against but in any case you'd likely need the help of a Geneticist specialising in Bioinformatics, looking at mutations in the viral genome to determine if:
Random chance alone could result in the gene sequences of the viral strains concerned, being shared between 2000 people (compared to the rest of the indigenous population - horrible choice of words but 'ideally infected with the same multiple infections i.e. Hep C, Hep B, HIV') - Viral genomes change very quickly, even within a single host because of the selective pressures exerted by the host's immune system. Though globally, the Viruses will show distinct variation.
(It's been ten years since I had to think like that)
A nightmare to prove, statistics.. always the nemesis of my studies. Stats and science don't mix well imho.
You could always ask one of the Profs/Docs at the universities for help. Times may have changed since my studies but for my dissertation I had to look at the evolution of haemoglobin proteins in different species. Using software called ClustalX you can determine the 'relatedness' of DNA/RNA/Protein sequences.
Getting that data for a set of viruses vetted or understood in the courts would be no easy task I'd guess.
I say this like it's not been tried already, do you know if any Geneticists were consulted during the preparation of any cases and if any screening/sequencing was performed on the 2000+ (As I'd guess that's were the answer would be found - but then I did get a 3rd :( owing largely to working most nights in a call centre gurrr... what a wasted youth, I'd love to be in a position to help with this professionally.
Kenwright
says...
3:52pm Sun 7 Nov 10
Thanks for your offer of help and it is well appreciated but you can rest assured that all that could be done by the victims of this disaster has been done.
But what chance has a community of vulnerable, ill people got against probably some of the finest legal minds in the USA and an unsympathetic judge.
What is disgraceful is the FACT that the British government and the NHS were warned several times of the very high risk of infections from importing US blood products, this was long before these viruses ever became a problem, top specialists in the field of virology and haematology warned the UK government on the possible fatal dangers of treating us with these imported product.
But the UK government failed to become self sufficient in donor product, as was promised and as a result the shortfall was made up with US products that were known to come from US high risk areas like prisons, skid row, drug addicts, as these were all paid for their donations and used the money to fund their habits, as a result when these donors filled in the questionnaires they lied to prevent disqualification from donating, donors who were infected with these killer viruses were allowed to donate and the UK government continued to import these product, even when it was known that they carried a very high risk of infection, the doctors treating us were aware of these dangers, the packaging even carried warnings of these dangers, but when a haemophiliac was being treated we were never shown these warnings or advised of the risks of using this product.
We weren’t even told we had been tested for any viral infections.
All this is well documented and presented to the Archer inquiry, the government refuses to send anyone from the NHS to the inquiry and many documents were withheld from the inquiry, even now we are refused many of these document even when requested under the FOI act.
A UK government is responsible for the deaths of over 2000 haemophiliacs and another 3000 facing an unknown future.
I accept this was not done deliberately but the victims of this disaster should now be compensated so they can at least leave a bit of security for their families, but up to now the UK government has refused to do this.
Thanks.
Mike.
JoshuaJ
says...
2:10pm Tue 16 Nov 10
As an update:
In the House Of Commons debate (14th Oct '10) it was openly stated that the present Government were unwilling to pay the innocent victims of this tragedy - 'the worst in the history of the NHS' - compensation equal to that paid by the Rep. Of Ireland to its victims due to financial restraints impose by the present recession. After 25+ years of campaigning for justice yet another promised review was the best we could obtain.
Today (16th Nov '10) it was announced that ex Guantanamo detainees will receive millions of pounds worth of compensation.
This is yet another 'kick in the nuts' by the latest Government to a group already decimated with ill health and poverty.
'John Smith'
Slimplynth says...
12:48pm Fri 5 Nov 10