There is much discussion in the media this week about the film “Worth” which can currently be viewed on Netflix. The movie deals with the very real issue of how do you value and calculate a life in financial terms after an individual and their family are seriously harmed? In this case the harm comes as a result of the September 11th 2001 terrorist attacks in the US. Worth features Michael Keaton as a lawyer and Stanley Tucci who has lost his wife and their collective dilemma over the ethics involved in putting a figure on what a person is worth… hence the title of the drama.
See trailer below…
“A Film About the Impossible Job of Valuating Lives” (The Atlantic, September 4th 2021)
Worth, a Netflix movie about the September 11th Victim Compensation Fund, reminds us that tragedies can’t be neatly quantified.
Here, I will look at some facts and figures comparing UK haemophiliacs in the Contaminated Blood scandal that were often treated with US plasma products for an inherited bleeding disorder where their blood does not clot properly to the victims of 9/11.
On August 29th, CNN reported that,
“a total of 2,996 people were killed in the 9/11 attacks, including the 19 terrorist hijackers aboard the four airplanes. Citizens of 78 countries died in New York, Washington, D.C., and Pennsylvania” ( cited in, September 11 Victim Aid and Compensation Fast Facts)
(This does not include First Responders after 9/11 that became ill as a result of participating in clean up operations.)
NOTE:- The number of deceased in the 9/11 attacks is actually LESS than the now over 3,000 Contaminated Blood haemophilia deaths in the UK alone that all belong to what the British government terms “a unique patient group” who were infected with HIV and hepatitis viruses during the 1970s and 80s by the very treatment meant to improve their lives.
What is particularly tragic, is that haemophiliacs often knew each other “from the cradle to the grave”, through familial links with haemophilia running through families, by attending special schools together such as Lord Mayor Treloar College, holidaying with each other through Haemophilia Society ventures, going to AGMs and conferences to learn more about their condition and treatment, spending time on the same hospital wards and attending each others weddings and funerals. The impact on the haemophilia community has been and continues to be devastating!
This disaster was called “the worst medical treatment disaster in the history of the NHS” by Lord Winston (in his role as vice chairman of the Haemophilia Society) and is a phrase which does not include those infected through whole blood transfusions whose death figures are entirely separate.
This destruction of life was truly a “Haemophilia Holocaust” (the term used by US lawyers) where another 10,000 American haemophiliacs were infected through bad blood, plasma collected from the highest risk donors in society, drug addicts, gay men, prisoners and prostitutes who sold their blood. Many more haemophiliacs were infected in Canada. The plasma from each person went to make up donor pools of up to 300,000 donors which was then manufactured into factor concentrates by US pharmaceutical companies. The lack of care in the collection of plasma often compromised donor safety as well as recipients of this so called “miracle” treatment. There was cross contamination, over bleeding and poor standards of care especially in the prison environment. If there any miracles that could be argued throughout this whole tragedy, it was that some haemophiliacs managed to survive against all odds, living through their contamination with multiple deadly viruses.
The UK also produced its own treatment products but with with much tighter collection guidelines using unpaid, volunteer donors and much smaller plasma pools. However, after the government failed to invest adequately to achieve self-sufficiency in producing factor concentrates, the government then relied heavily on importation.
As well as dealing with the actual infections, haemophiliacs have had to face the fact that key evidence on the safety of factor concentrates was kept from them. They discovered long afterwards that they were subjected to years of often unethical experimentation and treatment trials without their knowledge and informed consent. In addition, they learnt that many were tested for HIV and hepatitis viruses again without informed consent and positive test results were often withheld (sometimes for years) leading to infection of some partners and even children. In a nutshell, haemophiliacs were betrayed over and over again by many of those who were meant to protect them from harm and in some cases were failed even by their own lawyers, though all now have new legal teams working hard for justice.
As with 9/11, the global Contaminated Blood scandal included victims from many countries. In the case of haemophilia victims, this was wherever the pharmaceutical companies exported to and “dumped” their dangerous products. US lawyers have represented victims from around the world including victims from the UK.
One haemophilia lawsuit filed in the US which appeared on the Centre for Disease Control information network, highlighted the following in 2003:-
According to the lawsuit:
- The contaminated blood products had infected at least 5,000 hemophiliacs in Europe with HIV by 1992.
- Nearly all infections of hemophiliacs in Japan have been traced to contaminated U.S. blood products.
- At least 700 HIV cases in Latin America are linked to the use of contaminated blood products by hemophiliacs.
The case is Domenico Gullone et al. v. Bayer Corp. et al., C032572.
However, all UK cases were then returned to the UK for British courts to deliver justice on the grounds of “forum non conveniens” (not the right venue) and UK authorities were deemed to be the first line of “duty of care” for UK haemophiliacs. There was some progress in that for those that traced back infected treatment batch numbers to source, the US pharmaceutical companies did go as far as officially recognising these victims as a token gesture and a miniscule payment that wouldn’t in many cases have reached the equivalent of an average salary for one single year. Then then promptly sealed the case with a silence clause. It was only through the determination of Hartlepool born haemophiliac Peter Longstaff in initiating the US litigation for UK haemophiliacs through finding and approaching San Francisco law firm Leiff, Cabraser, Heimann and Bernstein with the support of US and Canadian campaigners that this small result was achieved.
The number of the 10,000 American haemophiliacs infected does not include their affected family members and is without taking into consideration the thousands of haemophiliacs that received infected US factor concentrates throughout the rest of the world, again these are figures far beyond those killed in 9/11 even adding in first responders harmed after that date. This damage on a colossal scale was attributed largely to the deeply flawed blood policies of governments combined with the actions (or inaction) of international pharmaceutical companies that often put profit before safety. This was followed by dubious decisions on the part of some treating doctors and ineffectiveness of national haemophilia organizations meant to be representing the interests of those with bleeding disorders.
In the UK, haemophiliacs were given a “Special Status” by government that recognized in parliament and documented in Hansard, that they were ALREADY disadvantaged from birth through their hereditary condition and as a result suffered in education, employment and denial of life insurance. In addition, there could be several haemophiliacs living within the same family, each infected with multiple viruses. This was their situation before considering the need for compensation for viral infections. Government stated,
“haemophiliacs were an exceptional and specific group who merited exceptional treatment. The Government remain convinced that their case is exceptional.”
In the US, “the average compensation award to a victim of 9/11 was $2, 082,128 and went as high as $7.1 million”. The victims of 9/11 were visible and in contrast to haemophiliacs had a huge amount of very public support from the beginning of their fight for justice whereas haemophiliacs had decades of extreme discrimination and abuse now being documented as part of the Infected Blood Inquiry chaired by Sir Brian Langstaff. The Inquiry is the largest ever held in the UK and commenced in 2017.
Unlike 9/11, no war was launched against those that killed the world’s haemophiliacs. It has been a huge uphill battle for victims themselves to get any recognition of the damage done by the state. To date, UK haemophiliacs and their families have only ever received “ex -gratia” payments and have yet to receive a penny in actual compensation..
The 9/11 attacks were visual and graphic on our TV screens and had a huge impact on the public conscience, whereas, Contaminated Blood victims were largely hidden, unheard and died in pain and distress often unseen except by loved ones, traumatized by what they experienced. The victims of 9/11 from different countries were attacked on US soil in full view of the world making it impossible to wriggle out of seriously addressing their damages, losses and needs. UK haemophiliacs were infected with US products but on their own home soil so lawyers acting for pharma companies were able to shift the blame onto the UK due to the fact that it was argued that UK authorities were aware of the risks and sourcing (as highlighted in documents campaigners researched and discovered) but failed to take action or alert the haemophilia community to dangers.
In the UK there was the problem of “conflict of interest” including regarding the national Haemophilia Society (haemophiliacs’ representative body) that received most of its funding from government and pharmaceutical companies. This translated to an unwillingness to upset both and a continuation of importation no matter what the safety risks. This resulted in a great deal of tension between campaigners and the Society.
By the time haemophiliacs and families attended a meeting in 2001 with the Haemophilia Society in London on the very day of the 9/11 attacks to discuss what needed to be done to improve relations, find mutual ground and what tactics to try next to achieve a public inquiry and long awaited truth and justice, they had ALREADY been campaigning for almost 2 decades. For years, victims infected and affected had been suffering and dying from a wide range of symptoms and physical damage from multiple viruses, experiencing ill health due to the impact of long term caring 24/7 and were living with psychological damage as a result of depression, anxiety, grief and PTSD. As with 9/11 victims, there is not an area of haemophiliacs’ lives that are not affected!
On 23rd August 2011, ABC News reported developments for 9/11 victims in the US as follows,
“The September 11th Victim Compensation Fund of 2001, created by Congress, distributed $7 billion to survivors and victims’ families. There have been 2,983 families of those who died and received an average of just over $2 million tax-free per claim, according to Kenneth Feinberg, former pro bono administrator of the fund.”
On July 29th, 2019, after much delay, Vox reported that 9/11 first responders would finally have a permanent victim compensation fund. The publication stated,
“A day after, the House Judiciary Committee unanimously voted to pass the Never Forget the Heroes Act, which would extend the fund through 2090. The entire House of Representatives passed the bill 402-12 on July 12, putting the pressure on Senate Republicans. Despite some protest from Sens. Rand Paul (R-KY) and Mike Lee (R-UT) due to budget concerns, the Senate overwhelmingly approved the bill 97-2 last week.
With the bill now signed into law, the financial pressures on the fund will be alleviated, and first responders and their families won’t have to worry about slashed benefits or whether they’d be compensated for the harm they suffered while serving the country.”
Twenty years after 9/11 and the meeting of haemophiliacs and the Haemophilia Society in London on that fateful day, they. unlike 9/11 victims have STILL not been compensated. For those that survived and bereaved families, their treatment by the state, post infection, has been almost as distressing as living (and dying) with multiple deadly viruses and relatives adjusting to their loss and grief.
In 2007, an attempt was made by Lord Archer of Sandwell to hold an inquiry into how haemophiliacs came to be given Contaminated Blood. Although well meaning, the Inquiry was privately funded and had no legal clout. Archer did however deliver very positive recommendations in 2009 including “compensation on a parity with Eire” that had the best compensation deal for haemophiliacs announced way back in 1996. This was however blocked on lies told by the British government falsely claiming Eire had paid out on the grounds of liability. This was completely false and letters already obtained by long standing campaigners Carol Grayson and Colette Wintle in 2004 when the lies began, showed that the Eire settlement was in fact a “no liability” scheme paid out on the grounds of “extraordinary suffering”. It was paid out at court levels without haemophiliacs having to go to court as the Eire government decided it would be wrong to retraumatise people who were suffering so much.
The letters which were written from the Eire government, Irish lawyers, Malcomson Law and the the Irish haemophilia Society were later used to win a Judicial Review in the name of haemophiliac Andrew March in 2010 and backed the fact that the governments decision not to compensate and the arguement used was “infected with error” due to the lies told to victims and in parliament to avoid paying out compensation.
The UK government also tried to say that no liability was found by Archer when they should have emphasised this was due to the fact that establishing liability was not in the Terms of Reference and any evidence showing this had to be returned to witnesses. Had the TORs been able to include this, many would argue, Archer would indeed have concluded that there was alleged negligence in many directions.
In 2021, decades after haemophiliacs and some of their partners and children became infected through Contaminated Blood, Sir Robert Francis QC has now been appointed by the Paymaster General and “has launched a consultation on the terms of reference for his independent study looking at options for a framework for compensation for the victims of the infected blood tragedy”.
This runs at the same time as the work of Sir Brian Langstaff who is looking at amongst other things, the day to day impact on victims and will come up with his own recommendations in his final report.
Haemophiliacs have lost their physical and psychological health and sometimes their partners and children through infection. In many cases, they also lost their livelihood, hard fought for educational opportunities at universities and colleges, wages, pensions, insurance, ability to obtain a mortgage and life insurance if they could get it in the first place. Many lost the right to a family life being unable to find a partner due to the stigma of HIV and hepatitis C and being exposed to new variant CJD. They also had to come to terms with not having children if they did marry, in case of passing on infection. Partners and sometimes other family members have had to give up good careers to become full time carers and also suffered physical and psychological trauma. In addition the treatment given to haemophiliacs often violated the Nuremberg Code set up in 1949 as a set of good guidelines for practise and clinical trials. They were used as guinea pigs in unethical trials and on top of all this, were subjected to extreme prejudice and discrimination and even had their organs stolen after death.
It is important to note that in addition to HIV and hepatitis viruses, haemophiliacs were also exposed to new variant CJD (this time through UK plasma) with a longer potential incubation period than first thought. Lord Archer who presided over a privately funded inquiry into Contaminated Blood that reported in 2009 said haemophilia victims must be compensated for each virus and in this case exposure to a prion disease in addition.
One widow of a man who developed CJD through growth hormone treatment was paid out £1.4 million in compensation and this did not include any additional viruses. On the 9th September 1999, the Guardian reported,
“Neil Kreibich contracted Creutzfeld- Jacob disease as a youngster with human growth hormone taken from the pituitary glands of contaminated corpses. He died in July 1997 at the age of 37. Mr Justice Morland said the department of Health should pay the record figure to his widow Elizabeth, 37, from Newcastle upon Tyne, and the couple’s three children all under seven.”
Back to 9/11, as the film Worth highlights, it is important that those calculating compensation claims of victims, “step out of the boardroom and meet people face to face” so that they can “understand each individual loss”.
Lawyers representing haemophiliacs have admitted to their clients that they have not dealt with a situation previously that reflects the same extent of damage as that caused to haemophiliacs and their families and that the current system of compensation within the UK would not adequately address harm on such an extensive scale.
To sum up, the impact of Contaminated Blood although hidden and played down for years as government went into “damage limitation” mode amounts to “extraordinary suffering” on a whole new level and remedies must fully acknowledge this fact. The lives of haemophiliacs and their families are worth no less than the victims of 9/11 and their tragedy, loss and suffering has in fact gone on for far longer. Haemophiliacs now wait to finally receive the “substantial compensation” that the UK government has committed to awarding the infected and affected whose lives have been damaged forever! It is also important that attitudes change and the practice of leaving the longest standing haemophilia campaigners out of key meetings to discuss compensation because they know their subject too well and will no longer be fobbed off with a pittance of a payment by government must end now.
It is important to note that the word “inadvertent” infection was quietly removed by government following a meeting of campaigners Carol Grayson and Colette Wintle with health minister Anne Milton in 2010. She rightly concluded the word was inappropriate and offensive to victims.
Since its launch in 2017, those attending the Infected Blood Inquiry in London or watching the proceedings livestream has been listening to harrowing stories from witnesses and it would be almost impossible not to conclude that what happened to them was as a result of alleged negligence. It is time therefore that government deliver the long awaited justice that so many have not lived to see and the level of compensation must adequately reflect the extraordinary level of harm, loss and financial need.
Anne Milton highlighted back in 2010 that a unique patient group required a unique solution and its time for government and lawyers to think “outside the box”. They may even need to include some legislative changes to expand financial help, protect benefits wherever a UK victim is living in the world (as not everyone wants to reside in the UK) and to avoid further double and triple punishment that has already been experienced by haemophiliacs. The infection of those with bleeding disorders has had a knock on effect in many areas of day to day life and the resulting consequences can affect benefits (depending on location) pensions and even family inheritance as victims become too ill to work and are forced to rely on the state. It is not only compensation that needs addressing but ensuring wider issues are not ignored. We know that any legislative changes can be pushed through very quickly when government so desires and improving the circumstances of haemophiliacs must include goodwill and be without delay.
The UK is very good at following the lead of the US (even when disastrous). As the US government has now demonstrated in extraordinary, and exceptional circumstances with a unique group of people such as 9/11 victims, if the law is not adequate to cover victims and there is fear of bankrupting companies (as was stated to haemophiliacs with the US plasma companies)… then change the law.
In the UK, government has finally agreed to compensate but it must be at the right level and changes may be needed to the law as in America. Exposing haemophiliacs to an almost 100% risk of hepatitis infection without FIRST researching a way to virally inactivate against the very high risks of using large plasma pools from paid donors could be argued as an act of “biological terrorism” against haemophiliacs in violation of the Nuremberg Code. This was set up in 1949 with guidelines to avoid unethical treatment trials such as those conducted by the Nazis at Auschwitz concentration camp. Haemophilia trials violated ever point of this code. According to UKHCDO records, Peter Longstaff was being studied by the now infamous Dr Craske from his first years at Treloar College as a boy on the first UK factor concentrate treatment trials right up until 1990 and was completely unaware of this fact.
No money will ever compensate for what has been inflicted on the haemophilia community which has devastated lives but it can help to make those lives a little easier by at least removing financial worries and reflecting the damage and apology (though very late in the day) given by the UK government to those infected and affected through Contaminated Blood. .
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 was 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”.