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

New Treatments Pipeline

posted: 10/09/2010

If you want to know about all the future treatments, tests, and prevention for HIV, hepatitis, and TB, the Treatment Action Group (TAG) have produced a new guide. It deals with

• future HIV antiretroviral treatments
• future ways of diagnosing HIV
• future HIV antiretroviral treatments for babies, children and young people
• future immune-based therapies and preventive technologies - like vaccines and pre-exposure prophylaxis (which means treatment to prevent HIV infection)
• future hepatitis B treatments
• future hepatitis C treatments
• future diagnosis, treatments and vaccines for tuberculosis (TB)

It's not an easy booklet to read, but there are 150 pages of information about new HIV treatments in the development 'pipeline.' That is a lot of new developments that should continue to steadily improve the quality and length of life people with HIV can expect.

TAG 2010 Pipeline Report from i-BASE

Treatment Action Group (TAG)

HIV Tests at Casualty

posted: 27/07/2010

Every person who goes to London A&E departments could soon be tested for HIV under plans being considered by NHS London. In the first move of its kind, the HIV checks could become routine at emergency units and will be offered to any adult attending casualty. The move is being rolled out at Chelsea & Westminster NHS foundation trust following a hugely successful Department of Health funded study at the south-west London hospital.
 

2 people diagnosed every month at one A&E

It comes because of the numbers of people with HIV and the rise in HIV across London. The pilot HIV testing at Chelsea and Westminster’s A&E department found nearly half a dozen new people with HIV in only three months.
 

The Health Protection Agency recently recommended that the NHS should as a matter of routine do a HIV healthcare check everyone when they go to an A&E department in any areas with higher rates of HIV. Now a number of other health trusts are already seriously considering this.
 

North West Too?

In NW England, Manchester, Salford and Blackpool have rates of HIV high enough to justify routine HIV screening in A&E.
 

Better Health and prevention

HIV testing at A&E is one way to improve the health of people with undiagnosed HIV. New figures show that at least one in every four people with HIV do not know they have HIV. Late diagnosis worsens people’s health and shortens people’s lives. Undiagnosed HIV means people don't get the treatment they need for good health and people may be passing on HIV unwittingly to their sexual partners.
 

Under 18s

Dr Rachael Jones, from Chelsea and Westminster hospital, said she has treated nearly a dozen patients under 18 in the last three years in West London but this was just “the tip of the iceberg”.
The consultant blamed ministers for focusing on underage pregnancy instead of on safer sex and said HIV tests should be routine for everyone, regardless of their sexual orientation. She said: “For a long time it was men having sex with men presenting with the virus. Now we're seeing teenagers coming through for the first time with HIV. It only takes one episode of unprotected sex for them to become infected.”
Dr Jones said that the “Don't die of ignorance” shock campaign of the Eighties failed to have a lasting impact and that many teenagers do not even know what HIV is.
 

Source 
 

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

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