Category: AE
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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HIV and Haemophilia Scandal
posted: 27/01/2009
The long-running scandal of the government's role in the HIV and hepatitis contamination of blood products given to haemophiliacs in this country in the 1980s rolls on. The government is now accused of withholding documents that could be vital to uncovering how thousands of haemophiliacs became infected with hepatitis C and HIV through blood products, such as Factor 8.
35 papers kept secret by Department of Health
Although the Department of Health has handed over thousands of papers to an independent public inquiry chaired by Lord Archer of Sandwell, the MP Jenny Willott has discovered through a parliamentary question that 35 documents are being withheld, many on the grounds of commercial interest.
"It is appalling that after 20 years, the government is still withholding information on one of the biggest health disasters this country has ever seen," said Willott.
Archer's inquiry, which is expected to report within weeks, was set up after the government persistently refused to hold an Inquiry. Jenny Willott MP, says the government ought to have given it official backing.
companies' profits protected after lives lost
"Over three-quarters of those who contracted HIV through contaminated NHS blood are now dead," she said. "The surviving victims' health has been ruined and thousands of others suffer from the daily effects of hepatitis C infection. Yet the UK government has consistently resisted calls for an inquiry. How can the government put private companies' interests, dating back to the 1980s, ahead of the right of the infected and the families of the deceased to know how this dreadful saga was able to happen?
"If the government had backed the independent Archer inquiry, the inquiry team would have had access to all the relevant information. Instead, potentially, crucial information will not be considered by Lord Archer. The Department of Health didn't even send anyone to give evidence to the inquiry.
"The government cannot hide from this issue forever. Hundreds of MPs from all parties support the surviving victims' right for justice and we will be picking up the mantle from Lord Archer when he reports in the next month."
Dan Farthing of the Haemophilia Society said: "By withholding vital evidence, the department are showing a profound lack of respect, not only to the inquiry and those who have given painful personal testimony to it, but to the thousands of families affected by the disaster. Commercial interests should not be put ahead of the effort to find out what went wrong, learn the necessary lessons and improve safety in the future. When the report is published we hope that the department will set aside its defensive approach and work constructively to address the injustices that have been highlighted."
More than 1,200 people were infected with HIV and 4,800 with hepatitis C after using contaminated imported blood and blood products such as factor 8 in the late 1970s and 1980s. Two-thirds are now dead.
The Archer inquiry heard that there was a government target to end the importation of blood in the mid-1970s, but it was not met. The shortfall was met, not by increasing UK production, but by importing blood products made from the blood of paid-for donors in USA cities who had high risk lifestyles. (People who donate blood for money in the USA tend to be poor, unhealthy and desperate)
The UK health department knew of the risk of HIV contaminated blood as early as 1983. The government claim they chose providing essential treatment for haemophiliacs despite the risks of HIV and hepatitis infections. In 1985 the National Blood Service (NBS) introduced HIV screening for donated blood, and since this time only three people have been infected with HIV in this way.
Source
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Face of Lighthouse
posted: 18/12/2008
Michael Edwards, who was the "face" of the HIV centre, London Lighthouse, warmly welcoming people at reception, has died. Michael Edwards, aged 63, was for nearly 20 years the smiling, welcoming face of London Lighthouse, the north Kensington centre for people infected with or affected by HIV. Diagnosed with cancer, he was given a year to live, but developed pneumonia and died a few days later.
Born in what was then southern Rhodesia (now Zimbabwe), Michael had Scottish and German Jewish grandfathers and two African grandmothers. He was the youngest of nine children, and his siblings spoilt him rotten. After a brief career as a dancer in Salisbury (now Harare), he came to London when he was 19 to train as a nurse, but health problems ruled out this career and he turned to hairdressing.
Almost 20 years of support
Michael joined London Lighthouse in 1989. He worked on the residential unit, where people infected with the virus came for respite or palliative care, until he was moved to the main reception desk, a job that suited him well.
He was very often the first person a visitor to Lighthouse, perhaps newly diagnosed, met, and the warmth of his welcome was something they never forgot. He could, when needed, be a tremendous pillar of strength, and he helped many people come to terms with their diagnosis, which in those early days could be a sentence of death.
His cheerful, friendly, charismatic personality touched everyone who came into contact with him. He had a wicked sense of humour, and was the life and soul of many a party. Over the past 20 years, thousands of photographs were taken at Lighthouse, and it would be hard to find one that did not show Michael's grinning face.
As well as working at Lighthouse, he was a part-time barman at Ted's Place, a gay club in Fulham, west London.
Michael always did things in style, and the funeral was as stylish as the man. A glass hearse, pulled by two black horses with pink plumes, carried the coffin, and the party afterwards at Lighthouse went on into the night.
source
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Shortest Jail for NW HIV Case
posted: 24/11/2008
A Lancashire man now living in Cheshire, who recklessly passed on HIV to his former girlfriend and then fled to Thailand, has been jailed for a year.
Police initially thought the 41-year-old may have died in the 2004 Boxing Day Asian tsunami, but he was later spotted in Clitheroe, Lancashire.
Infected as a teenager by treatment for haemophilia
Preston Crown Court heard the man contracted HIV in the 1980s when he was 17 through contaminated blood clotting agent (Factor 8) which is essential to treat his haemophilia. Many haemophiliacs (people whose blood doesn’t clot properly) were given imported Factor 8 treatment made from blood obtained from risky USA sources in an NHS blood scandal in the 1980s. His imported factor 8 blood product was contaminated with HIV. Factor 8 is now made from fully screened UK blood and is treated as an extra precaution.
Shame and stigma blocked telling
The 1980s stigma attached to HIV (at the time of the scary icebergs and tombstone public information campaigns when there was no treatment for HIV) meant he was too frightened and embarrassed to tell anyone - including his long term partner.
The court heard how the man who used to live in Accrington, Lancashire, met his then girlfriend in 1993 at a Blackburn nightclub, when he was 25 and she was 16. The pair started a relationship, buying a home in Accrington together.
Prosecuting, Peter Horgan said: "At first they used condoms but as the relationship developed they regularly had unprotected sex." The couple went through a brief separation and eventually split in 2000.
Five months later, the woman learnt through a friend of her partner’s that he was HIV positive. She tested positive for the illness, as did a man with whom she had a later long term relationship.
Scientific tests on blood samples revealed the woman probably contracted the illness between 1994 - 1996.
Her weight plummeted from 10 stone to six, she was hospitalised after two suicide attempts and had to undergo counselling. In a victim statement, the woman, now 32 and a mother-of-two, said: "I feel like a 90-year-old woman, unable to walk upstairs. My life has fallen apart. It is hard to express in words how I felt getting such horrible news. I kept thinking of my son, who would look after him if I was to die?"
Arrested at Manchester airport
The matter was reported to the police in 2003 but he fled to Thailand soon after. Following negotiations between police and his solicitor he was arrested at Manchester airport in January 2007.
Defending Mark Stuart said that the 1980s attitude that HIV was contracted through homosexual sex or needle sharing led him to keep quiet about his condition. Mr Stuart said: "He was extremely immature. He didn't tell anyone. He should have told her. He was in love with her, this was not a case of him using and abusing her.”
The man, who lives in Crewe with his Thai wife of seven years, pleaded guilty to reckless grievous bodily harm. He wept as he was jailed for a year.
Sentencing dilemma and some compassion
Judge Andrew Woolman said he had found it a difficult sentencing. Jailing him for 12 months, he said: "You started off as a victim, then you created two more in the course of your selfish activities, which were highly reckless. You were the victim of both haemophilia and from the misfortune of being given infected blood, but at no stage during that relationship did you discuss you were HIV positive. When you resumed that relationship you once again had the opportunity to tell her of your position."
He added: "You have effectively infected two people with the HIV virus, both have developed AIDS.
The consequences have been devastating, both physically and psychologically.
"It is a tragedy that I have to be sentencing you at all and I cannot restore back your health. I have come to the conclusion that where a person puts their own needs before those of others there has to be some measure of punishment."
Speaking after sentencing, officer in the case, DC Paul Harwood said he was satisfied with the sentence. He said: “The sentence given can never take into account the effects [his] actions have had on the victims involved. His callous behaviour in concealing his HIV has changed their lives forever and I can only hope that they can now derive some satisfaction that [he] has been held accountable for his actions.”
George House Trust comment
The one year sentence for reckless GBH is the lowest UK sentence yet for a HIV transmission. The maximum is 5 years and most people have had 3 or more years jail. He pleaded guilty and this normally leads to a shorter sentence.
As far as we are aware the defendant did not seek the support and advice of HIV organisations who are expert in these cases. Nor did he seem to have an expert barrister familiar with the most recent cases, none of which led to convictions.
It is also not clear that the Crown Prosecution Service followed their own national policy and guidelines for prosecuting sexually transmitted infections. They are required to be especially careful about any scientific evidence supposedly explaining who infected who. Science can't definitely answer that question. HIV organisations are closely monitoring the Crown Prosecution Service adherence to its own policy and guidelines.
“The prosecutor will need to be satisfied that the complainant did not receive the infection from a third party or that the complainant did not infect the defendant,” it says in the legal guidance for prosecutors. “This means that the prosecutor will need to know about any possibility which is compatible with the scientific evidence that the complainant was infected by a third party. This means enquiries will have to be made about the relevant sexual behaviour and relevant sexual history of the complainant."
Source
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