Cover of Arkansas Times, story tracing haemophilia NHS blood products back to infected prisoners at Arkansas State Penitentiary
10th February 2016
The Department of Health have recently announced proposals for drastic cuts to monthly incomes and allowances that will impact on the victims of the “worst medical treatment disaster in the history if the NHS”. This is the UK’s haemophilia community that received contaminated blood products to treat a bleeding disorder where the blood does not clot.
To save money, the government often imported factor concentrates, plasma products made from the blood of US prisoners infected with deadly viruses including HIV and hepatitis C. Inmates’ blood was then injected into haemophiliacs often young boys (haemophilia predominately affects males, though some women “bleed” also). Many became infected. Years later, lawyers for haemophiliacs were able to trace treatment batch number directly back to infected donors at US prisons proving their claims.
The inmates were classed as “high-risk”, often known drug users practicing unprotected sex, some were used in medical experimentation and others were subjected to beatings and torture. The collection of plasma and the so called “treatment” of haemophiliacs violated points 1 to 10 of the Nuremberg Code. This was a set of ethical medical guidelines set up in 1948 following shocking experiments on Jews, gypsies, disabled and homosexuals during the Second World War.
For years the government covered up their wrongdoing. Some media falsely reported the tragedy as an “unavoidable accident” following the government line which has only delayed justice. Finally this terrible tragedy which occurred over successive governments is now being described by Current Shadow Secretary of State for Health, Andrew Gwynne as “negligence of public bodies” during a speech in the House of Commons. Negligence requires proper compensation.
Many of the 4,500 infected have since died, others struggle on in pain suffering severe health problems and existing on a low income unable to work. Lawyers for haemophiliacs have described this as a “haemophilia holocaust”. They are supported and cared for often by family members who themselves have given up careers to become carers. Whole families have been affected by the stigma associated with HIV/HCV. Some couples did not have children for fear of passing on infections. Haemophiliacs were also exposed to vCJD (Mad Cows Disease) through blood products.
The government has never allowed a public inquiry to investigate the circumstances of infection. Instead the Department of Health lied, shredded documents and withheld key evidence to try to stop haemophiliacs holding anyone to account. Lord David Owen put money aside to invest in UK production of plasma products from far safer volunteer donors when he was Health Minister in the 1970s. He stated on the front page of the Guardian that “if there was ever a public inquiry, the government wouldn’t have a leg to stand on”. Once he left the department his safeguards to ensure blood safety were never carried out.
A privately funded inquiry held by Lord Archer of Sandwell (former Solicitor General) heard evidence and haemophiliacs’ stories and recommended compensation “on a parity with Ireland” in the Archer Report. This was ignored as government once again misled the public with incorrect information saying wrongly that the situation for haemophiliacs in Ireland given a decent compensation settlement was different. This was proven NOT to be the case when a haemophiliac challenged the government winning a Judicial Review in the High Court in 2010. This too was ignored. The new proposals are “death by a 1,000 cuts”. Haemophiliacs have been betrayed by the government are being “shafted” now by the Department of Health but they refuse to die quietly!
NOTE… Neither the Archer Inquiry nor the Penrose Inquiry (set up in Scotland) to investigate the circumstances of infection had within their remit to look at negligence and liability or call for accountability.
“Infected blood scandal patients were failed by inquiry, support group tells MSPs”
Last year Prime Minister David Cameron apologized to the haemophilia community. Hope arose that after decades of suffering and abuse there might be a review of the “woefully inadequate” payment scheme set up for haemophiliacs on an “ex-gratia” basis as compensation was refused. On the contrary, Secretary of State for Health, Jeremy Hunt has now decided to inflict a form of “collective punishment” on haemophiliacs and their families. A consultation document has been circulated from the DOH with a questionnaire which effectively gives choices of which type of poverty a haemophilia would prefer to accept. (See “Links” section following article for details and Haemophilia Society response)
ln effect, Hunt has offered up a “final solution” that would deprive sick and dying people of significant portions of their much needed monthly allowances. In addition they stand to lose benefits from Trusts set up to support them such as pre-paid prescriptions, welfare advice, grants for children and heating allowances. Some could lose as much as £6,244 per annum. A leaked documents showed some haemophiliacs not die quickly enough and are too expensive to maintain. Cutting their income and support will help them on their way.
If that amount were removed from UK workers, there would be riots on the streets. The coldness and lack of compassion from the state is astounding. With the removal of pre-paid prescriptions some haemophiliacs will be forced to pay themselves to treat the viruses inflicted upon them by greedy successive governments who put profit before safety. There is a saying that a country is judged by how it treats its sick, poor and vulnerable, the British government have clearly given up on human rights and get a big ‘FAIL” on their treatment of a patient group harmed by the State!
The Haemophilia Society that represents persons with blood disorders stated,
“The Department of Health in England has launched a consultation on the support for people with contaminated blood. The Haemophilia Society has deep concerns about this and has prepared information for our community to help them campaign for it to be withdrawn.” (See “Links Section”)
One haemophiliac tells his story (submitted to the Contaminated blood Progressive Discussion Group, with thanks) He has chosen to remain anonymous.
I am a severe haemophiliac, type ‘A’. Up until the age of 12 I was treated with a blood product called cryoprecipitate. This is part of the blood that is used to make blood clot. In the early 1980’s the NHS was looking at an alternative drug that America had stated using, that was more portable and was freeze dried. This product was called Armour factor VIII, there were other brands also.
However the issue of this drug is not how it performed but where it came from and whom. It came from American prisons where the donors were paid fees to give blood. This itself wouldn’t have been an issue if the prisoners weren’t infected with lethal cocktails of viruses e.g. HIV, HEP C, HEP B, HERPES, HEP A and many more.
As you can see, the very idea of ill, virus-ridden prisoners giving blood is a flawed concept. The inevitable happened as a consequence and thousands of haemophiliacs and transfusion recipient patients were infected with a cocktail of mixed viruses worldwide. Thousands died.
Personal current details
I am now 45 years old. I was infected with HIV at 12 years of age and Hep C and around the age of 18. When the hospital found out they gave me no more than a few years to live. This was normally the case back in the 1980s. Thousands of people worldwide were dropping dead like flies, so it was easy to see how the hospital had come to this conclusion.
How did it affect me?
You have to imagine now being a 12 year old kid. Picture yourself going to school every day with the biggest secret in the world that your mother and father, plus hospital doctors tell you that you can’t tell anyone. Not teachers, friends, absolutely no-one. Then on top of this stress, think about being told at 12 years of age that you might only live for another two years. In one way I suppose its empowering cause you have an excuse not to do anything in life – no homework, don’t need to get a good education, but the problem was the doctors were wrong and basically here I am. In an absolute mess. The problem was compounded after a few years when I thought, along with my parents, that hey, I might be okay. Then along comes the second infection; HEP C. By this time you would have thought the NHS would have stopped buying dodgy blood, but hey oh, that’s another story. So again I was back in the scenario of only a few years to live, this time with two huge secrets to keep.
Impact on my life
Girlfriends were a no-no, friends basically were a no-no as I distanced myself to hide my secret. Can you also imagine the horror and stress my mom and dad went through? You see similar pictures in Africa and third world countries even today where young children are dying from horrible diseases. You have to remember it was a time when the Governments and media were panicking, public hatred was high. I was basically a leper. Not a great start in life for a child I might add, especially with having chronic joint bleeds along with the pain and suffering that goes with severe haemophilia A. I have horror stories when I think back to my school days.
When I reached the age of 20 I worked for my local council for 12years. This too was a disaster as with my Haemophilia and chronic illnesses I struggled to stay at work. I was constantly bullied at work by the bosses. My life was hell. The hospital social worker eventually advised me to give up my job for the sake of my health. I haven’t worked since and have struggled to survive on the paltry payments given over the years from income support and the Government’s ex-gratia scheme.
I have to say that I am very resilient, like so many in our community, but also very damaged. I have acute anxiety issues, agoraphobia, chronic stress all diagnosed by a psychologist. I used music to help my situation. It does help. Other symptoms are chronic pain in my ribs which I’ve lived with for years, incredible bad stomach issues cause by HIV meds and possibly HEP C, memory issues, insomnia, mood swings, numbness in hands and arms, extreme dizzy spells, extreme allergies that have only came on in the last two years, dry eye issue, thrush. The list is endless really.
I’m presently living in an independent living bungalow with emergency pull chords with my wife. I cannot work due to long term health issues. I am receiving roughly £14,700 from MFET payments; nearly a quarter of it pays for the bedroom tax, reducing my support enormously. The local council will not give me discretionary housing payments as they take into account my MFET payments and DLA. It’s quite shocking really.
The spare rooms in my bungalow are as follows.
1) My hobby/therapy room. My only way of preserving sanity and an escape from my stresses.
2) A spare room where my grand- kids and family come to stay, also where my mom comes to stay when I’m ill.
Despite numerous attempt at court challenges the Government still insist on applying this draconian tax. Sometimes I feel the Government are just trying to bring me down, perhaps even to kill me off with stress so that I’ll go away.
For me, when David Cameron said he would bring an end to this whole mess of a situation and give proper adequate support to victims, I thought it was too good to be true. His promise to give security for victims was memorable.
My history that brought me to my feelings of negativity include constant solicitors, the Archer Inquiry the Penrose Inquiry and the constant delays since David Cameron announced he would give proper support. In the past 30 years nothing has ever really materialised as adequate.
The closest, I imagine, is what Scotland is proposing. For my situation I could probably accept this offer, although I am well aware it wouldn’t suit everyone. I’m struggling with life’s pressures, along with chronic pains and illnesses. I just want to not worry about finances, whatever happens.
Consequences of the new government proposals going ahead
If the new Government proposals go ahead, I as an HIV/Hep C due-infected victim will probably lose my home and my sanity. I will be down around £6,000 per year. I struggle now, especially with Bedroom tax on top and constant hospital visits.
Also losing the support from the Macfarlane trust would be devastating. Currently they provide winter fuel payments which are a massive help due to my high energy bills trying to keep warm, they provide support assistance for benefit issues and emergency payments for needs. The MacFarlane trust would be a big loss.
End of statement
We remember all those who campaigned with the Haemophilia community over many years, living and deceased, their efforts continue to inspire
(The author of this article received the ESRC Michael Young award for her research into the global blood trade and infection of the UK haemophilia community with HIV/HCV) and campaigns for truth and justice for the haemophilia community.)
See following link,
“Campaigning North East woman gains national research award”
“Department of Health Consultation – Infected blood: reform of financial and other support”
Haemophilia Society response
“English letter shock for Scots hit by contaminated blood scandal”
‘NHS blood saga broke Nuremberg Code’: Government compensation long overdue
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She is a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.