Compensation for Bad Blood
posted: 11/01/2011
More compensation will be paid to people (who are mainly people with haemophilia) who got hepatitis C from contaminated blood transfusions by the NHS over 20 years ago, the government announced.
Many people got HIV through the same contaminated blood scandal, while others got both HIV and hepatitis C and some just hepatitis C. The compensation arrangements for HIV and hepatitis C were different and people with hepatitis C felt cheated.
Hepatitis C campaigners are still unhappy and will continue to fight for more help. One of the campaigning groups, Tainted Blood, said the offer "hugely disappointing", and Haemophilia Society chief executive Chris James said the payments "would not bring closure to many people."
HIV complaint too
A man with HIV from Blackburn, Lancashire, 'John Smith' has also criticised the compensation scheme as inadequate.
‘Serious disease' payments
The announcement by the health secretary, Andrew Lansley, follows a three-month review of the compensation paid to those who were infected with hepatitis C, which can cause liver damage and cancer. Separate settlements were made to those who got HIV through blood transfusions. Some people were infected with both HIV and hepatitis C. Many of those who received contaminated blood in the 1970s and 1980s have died.
Cirrhosis and liver cancer
The new deal offers better compensation to those whose hepatitis C infection has progressed to cause serious disease. The current terms allow a one-off payment of £20,000 to all those infected, with a further £25,000 if they develop more severe diseases, such as cirrhosis or liver cancer.
Under the new deal, the second group – those with severe diseases – will get an annual payment of £12,800 a year. Those with severe diseases who have already been given a lump sum will have it increased from £25,000 to £50,000.
There will also be "discretionary payments" to those most in need, and the dependents of those who died before 2003 will for the first time be able to claim. There will also be a doubling in a one-off payment to £50,000 when people become very ill.
"I fully recognise that the unintended and tragic consequences of these treatments have seriously impaired the lives of many people, together with those of their families," said Lansley. "For too long those people infected with hepatitis C have received different support to those infected with HIV. We now intend to make the financial support for hepatitis C patients fairer and more comparable to the arrangements for those infected with HIV."
Campaigners’ disappointment
But, after decades of fighting for what they consider fair settlement, including the recent independent inquiry by Lord Archer which recommended much greater generosity from the government, campaigners said they were devastated.
Sue Threakall, secretary of Tainted Blood, said: "While there are some minor positive points, we are devastated by this announcement. There are a limited number of people that the new financial support will be available to and the level of payment to those who will qualify is hugely disappointing. It will not bring to an end the years of suffering and will mean that the campaign for achieving proper compensation for all will continue with a new vigour."
Chris James, chief executive of the Haemophilia Society, said he thought the reaction from the community would be that it is "a gesture rather than a settlement. People will not feel that this is going to bring closure in terms of the money being paid. The levels of compensation are not in the region that people still feel is appropriate for the impact on their lives."
Those who were infected but not severely ill would get nothing more – unless they were in serious need and qualified for a discretionary payment – and the new annual payment for those with liver cancer is only likely to be paid for very few years because life expectancy for people with liver cancer is short.
Sources
Guardian
BBC
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Outrage at Blood Scandal Payout
posted: 21/05/2009
The government is accused of meanness to save money, rather than give justice for survivors, in the worst treatment scandal of NHS history. It decided not to increase compensation for people infected in the 1970s and 1980s with hepatitis C during routine blood transfusions. A small increase is to be paid to people who became infected with HIV in the same NHS scandal.
Significant numbers of those infected are haemophiliacs who regularly required concentrated blood products made from many donors - such as Factor 8.
An independent inquiry into the scandal, chaired by Lord Archer of Sandwell, in February recommended better payouts for nearly 3,000 affected haemophiliacs, as well as help for widows and dependants.
A Little more for HIV. For Hepatitis C: government will reconsider, in 2014
Their hopes were dashed today by a response from the Department of Health offering an increase for the minority who were infected with HIV but nothing more than a review in five years' time for the rest.
Archer condemned the response as "deeply disquieting" and a "faltering step that only compounds the anguish of the afflicted and bereaved".
He said: "It is difficult to avoid the conclusion that humanitarian impulses have come a bad second to Treasury constraints."
Archer branded the new funding for patients with HIV "paltry", and said the failure to increase help available to victims with hepatitis C and to offer payment to their dependants was "sadly lacking both in understanding and in compassion".
In the 1970s and 80s about 4,670 haemophiliacs were given blood contaminated with the hepatitis C virus and 1,200 were unwittingly infected with HIV. The blood products came from commercial companies in the USA whose paid donors included drug addicts and prisoners.
The health minister Dawn Primarolo, publishing the government's response, offered the victims her deepest sympathy.
"Sadly, it was not possible to effectively test for these viruses in the 1970s and early 80s and we deeply regret that these events occurred following NHS treatment," she said.
More for HIV+ people
In addition to £150m that has already been shared out in lump sums and discretionary payments, financial help for those with HIV would rise to £12,800 per year, Primarolo announced. She gave a commitment to review financial relief for the others within five years and announced £100,000 for the Haemophilia Society, which recently had its government funding cut by £70,000.
Chris James, chief executive of the Haemophilia Society, said: "It is hard to believe that ministers can actually have read Lord Archer's landmark findings in full – still less the heartrending testimonies of haemophilia patients infected by contaminated NHS blood and blood products and the bereaved families.
"The government claims to accept the moral case for action but then, by not implementing the recommendations in full, shows its contempt for the victims of what Lord Winston has described as the "worst treatment disaster in the history of the NHS".
He said that while haemophilia patients – some of whom were very ill and had since died – had travelled many miles to give evidence to the inquiry opposite the House of Commons, no health minister was willing to cross the road.
Fight goes on
James said he would write to the leaders of the three main parties this week asking for an urgent meeting. After two years of deliberations, Lord Archer had put forward a series of humane and detailed recommendations to improve the lives of the victims of NHS mistakes, he said.
"The government talks of moral responsibility but has seen fit to try to ignore or water down Lord Archer's recommendations. In a week when the morality of the political process has been called into doubt it is simply unacceptable for ministers to propose such a collection of half measures."
Lord Morris of Manchester, who was instrumental in getting the inquiry set up and who has raised the issues regularly in parliament, said: "This response will totally dismay the victims of an NHS treatment disaster that had already claimed the lives of 1,757 haemophiliac patients when I announced the setting up of the inquiry in February 2007."
Since then, he said, in excess of 200 more had died and it was now thought that 802 people with haemophilia had been given blood from donors who had since died from variant CJD.
Lord Morris said it was "totally wrong" to treat patients differently according to whether they were infected with just hepatitis C or HIV as well. He thought it was "cruelly wrong" not to offer help to the widows and dependents of those affected.
Source
BBC
Times
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Haemophilia and HIV
posted: 09/03/2009
Transfusion roulette
The New York Times called it "transfusion roulette" (1965): the high rate of hepatitis C among poor people most likely to sell their blood, or what the Mail on Sunday called "killer blood" when the HIV link was reported (1983).
In 1970 the distinguished Richard Titmuss had written a booklet called The Gift Relationship, arguing a system for donating blood was far better than one were blood in bought: the NHS vs the US commercial system.
US blood
What wasn't widely understood was that in the mid-1960s, new methods of treating blood plasma had transformed the treatment of haemophilia and thus greatly increased demand for plasma. The old-style NHS failed to respond; hence the UK imported more US blood.
David Owen, Labour's forceful health minister in 1974-76, struggled to promote self-sufficiency and failed. Pre-devolution Scotland moved faster to use heat-treated blood. Whitehall seemed both slow and careless.
The Tories proved arguably far worse after they won the 1979 election. They blocked replacing the substandard laboratory which meant we depended on the USA. The problem carried on for far longer and killed many more people as a result. Only in 1987 did health minister Tony Newton (a good guy), announce a £10m special fund to help victims. Only by 1991 was the screened blood supply secure again.
Twenty years on some compensation has been paid out by the MacFarlane (HIV) and Skipton (Hepatitis C) trusts to 5,000 or so victims of infected blood transfusions. But far less than in Ireland, for example, which took half the time the UK took to sort out its own blood disaster.
Inquiries
Whitehall has staged at least two internal inquiries although, as Lord Archer discovered, a lot of evidence was destroyed "in error". There is strongly circumstantial evidence that evidence was destroyed by the Department of Health, after one EU government lost a legal case over its own mishandling of the crisis.
But no public inquiry was ever agreed so £75,000 was privately raised to fund Archer's two-year independent probe, instigated by Lord Morris, ex-disability minister and president of the Haemophilia Society.
Other countries have done better. In France two blood transfusion officials were jailed in 1993 ("scapegoats", said allies). Canada and, as long ago as 1991, Ireland, set up generous compensation schemes.
Our approach has been "niggardly and inadequate", Archer says; officials have ganged up from the start against an inquiry. Most health secretaries have mishandled this, and official liability for mistakes has never been admitted in the UK.
British vice
A British vice, I fear. Lord Archer wants a statutory commission with agreed entitlements. That public inquiry would be nice. So would a formal apology.
Who was helpful? I asked Peter Archer. Certainly David Owen and Lord Jenkin (social services secretary, 1979-81), he says. Lord Warner declined to give evidence. No current ministers have spoken. Oddly enough, health officials were not obstructive, were even helpful in a quiet way, as if they wanted to do good by stealth. Archer had three meetings with them, not minuted, of course.
The official position now? They're "studying" the report.
You can sign a petition to Number 10 to implement what the Archer report recommends
source
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Haemophilia, HIV - Failings Condemned
posted: 25/02/2009
A public inquiry has condemned the series of failings that led to thousands of people in the UK being infected with HIV and hepatitis from contaminated blood products.
The independent privately-funded inquiry called the use of contaminated blood products to treat people with haemophilia a "horrific human tragedy".
The report suggested UK health bodies had been slow to react, but accepted it was hard to directly apportion blame.
People with haemophilia and their affected families are angry and demanding proper compensation for the government's failings. Ministers and civil servants appear to have neglected the needs of haemophiliacs from the mid 1970s despite clear evidence of blood contamination problems and the need to act urgently.
It also appears department of health papers on the scandal were destroyed in case haemophiliacs took them to court. Patients in Ireland had won a court battle about the same problem of government failure.
In the 1970s and 1980s, nearly 5,000 people were exposed to hepatitis C.
Of these, more than 1,200 were also infected with HIV.
Almost 2,000 have since died as a result.
A tale of haemophilia
Haydn Lewis, 52, from Cardiff, is a haemophiliac who became infected with HIV and hepatitis C from tainted blood.
He is now on the waiting list for a liver transplant, and believes he infected his wife because doctors delayed telling him.
He said the report should have been more critical of government, and recommended better compensation arrangements for those affected.
"I want to wake up one morning and not have to think about this issue because that is how you lead a constructive life," he said.
"This has been a ball and chain around my ankle for 20-odd years, trying to get it addressed once and for all with some closure."
Despite the death toll, successive governments have refused to admit any fault or hold an investigation, forcing this public inquiry to rely on private donors.
Haemophilia is a rare inherited bleeding disorder in which the blood does not clot normally.
There is no cure, but the condition can be managed using a clotting treatment - typically factor 8.
From 1973, some blood products were imported from the US as UK suppliers could not keep pace with demand.
The two-year inquiry, led by Lord Archer of Sandwell, said the main responsibility for the tragedy rested with the US suppliers of the contaminated blood products. He said commercial interests appeared to have been given a higher priority than patient safety.
Much of the blood used for creating the factor 8 treatment came from desperate donors, such as prison inmates, and injecting drug users who were paid to give blood. Injecting drug users and prison inmates in the USA have a much higher likelihood of hepatitis C and HIV than the rest of the population.
Blood products began to be heat-treated from the mid 1980s to kill viruses.
However, Lord Archer also criticised the government at the time for being slow to become self-sufficient with blood products - UK-sourced blood is never paid for and all blood donors are carefully screened.
He said there was "lethargic" progress, with England and Wales taking 13 years compared to just five in Ireland.
Deal with the needs now
But he added: "It is a bit late to say who is to blame when little can be done about it.
"What the government ought to address is the needs of people now."
To do this, he recommended a government-administered and backed compensation scheme for those who were affected - money currently available to victims comes from charitable trusts.
And to improve the treatment and management of the condition, the inquiry called for a committee of specialists to be set up to act as official advisers to ministers.
Lord Archer also said a public inquiry should have been held earlier.
He said some witnesses were unable to fully recollect what had happened because of the passage of time.
Department of Health refused to give evidence
And Lord Archer lamented the decision of the Department of Health not to give evidence publicly - there were several private meetings with officials - and with-hold certain documents.
"It is hard to say what we could have found out."
'Swift action' call
Sue Threakall, from the campaign group from Tainted Blood whose husband died after being given contaminated blood, welcomed the report.
She said: "What we need now is to see some very swift action from the government.
"All we have ever wanted is the truth, and some justice."
Christopher James, chief executive of the Haemophilia Society, agreed.
He said the use of contaminated blood was the "worst tragedy in the history of the NHS", and the way victims had been treated to date had not been right. He urged ministers to make up for this.
He said: "It is absolutely shameful that successive governments have not held a public inquiry into this issue.
"We've said for some time that the current level of payments and the method of payment are inappropriate and not fit for purpose.
"It is now up to the government to look at the report.
"We want them to act on it urgently and significantly."
A Department of Health spokesman said: "We have great sympathy for the patients and families affected and will study the findings of Lord Archer's report in detail."
He added there was now "robust screening" of blood and blood products taking place.
The Scottish Executive has promised a full public inquiry.
Publication of the report follows the news last week of the first case of vCJD in a patient with haemophilia - discovered during a post-mortem after the patient died from other causes.
Up to 4,000 haemophilia sufferers have been warned they could be at risk of variant Creutzfeldt-Jakob disease.
Andrew March, a haemophiliac who contracted both HIV and Hepatitis C through contaminated blood treatments, said he believed that information had been deliberately hidden.
"I believe there's been a definite cover-up of the information," he said.
"You know, various documents weren't released in the FOI that came directly from the department.
"Campaigners had to source these documents under their own initiative. Well, intent's a very hard thing to prove but I do believe there was wrongdoing."
The Human Costs
4,670 people got hepatitis C after receiving tainted blood from NHS in the late 70s and early 80s
1,243 people got both HIV and hepatatis C from infected blood
2,000 (estimated) people have died as a result of receiving contaminated blood products
£75,000 cost of Archer inquiry, which was funded entirely by donations and received no government support
source 1 with audio and video
source 2
source 3
The Archer report
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HIV, Haemophilia and vCJD
posted: 18/02/2009
The first NHS patient to contract the human form of BSE after being treated with infected blood products was confirmed yesterday by the Health Protection Agency (HPA).
It released details about an unnamed man with haemophilia who was injected with a blood-clotting agent made from an infected donor's plasma.
The man, who was over 70, died from an unrelated condition after showing no symptoms of variant Creutzfeldt-Jakob disease (vCJD), or any other neurological condition. The vCJD infection was only identified, in his spleen, during a postmortem.
In 1999 blood supply safety measures against vCJD began
The HPA said: "It is known that the patient had been treated with several batches of UK-sourced clotting factors before 1999, which is when measures to improve the safety of blood in relation to vCJD were introduced."
The treatment included one batch of the clotting protein Factor VIII that had been taken from the plasma of a donor who went on to develop symptoms of vCJD six months after donating it in 1996.
Risks for haemophiliacs who may also have become HIV+ from blood products
Professor Mike Catchpole, director of the HPA's centre for infections, said: "This new finding may indicate that what was until now a theoretical risk may be an actual risk to certain individuals who have received blood plasma products, although the risk could still be quite low.
"We recognise that this finding will be of concern for persons with haemophilia who will be awaiting the completion of the ongoing investigations and their interpretation. The priority is to ensure that patients are informed of this development ... as soon as possible."
Warning 5 years ago
The HPA issued an alert five years ago to all patients with bleeding disorders including haemophilia, who were treated with UK-sourced pooled plasma products between 1980 and 2001. It said they should be classed as "at risk" of vCJD due to the possibility of infection. The agency said the latest discovery would not change the at risk status.
Call for immediate information
Chris James, chief executive of the Haemophilia Society, said: "This terrible news is causing huge worry and concern to families all over the UK. It is vital that, following the mishandled release of this news, the Department of Health now acts swiftly to give people the full details and offer them the appropriate support. Detailed information about recent developments must be made available immediately to all those who have been treated with potentially infected plasma products.
UK delayed providing synthetic blood factor
"Unfortunately, the risks are higher than they might have been because health authorities in England and Wales continued to use products derived from human blood to treat haemophilia long after most other developed countries had switched to safer, synthetic recombinant treatments." Since 1995, 164 people in Britain have died from vCJD, but there was just one death last year.
Source
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