Update to Parliament on the infected blood scheme consultation

Update to Parliament on the infected blood scheme consultation

Oral statement to Parliament
Infected blood scheme reform

From:Department of Health and Jane Ellison MP
Delivered on:21 January 2016

First published:21 January 2016

In the urgent question on 16 December I committed to publishing the consultation on infected blood scheme reform in January. I am therefore pleased to be here today to announce the launch of that consultation.

I recognise that for some this will come too late, Mr Speaker, I can’t right the pain and distress of 30 years and the truth is that no amount of money could ever make up for the impact this tragedy has had on people’s lives.

For legal reasons, I should be clear that, in the majority of cases, it is not appropriate to talk about compensation payments. I have made that point before. But Mr Deputy Speaker, I would like to echo what has been said before in this House and say sorry on behalf of the government to every person affected by this tragedy.

Scheme reform is a priority for me and for this government, and for this reason I can announce today that the Department of Health has identified £100 million from its budget for the proposals set out in the consultation. This is in addition to the current spend and the £25 million already announced in March 2015. This will more than double our annual spend on the scheme over the next 5 years. This is significantly more than any previous government has been able to provide for those affected by this tragedy.

I know all too well of the ill health and other impacts on many of those affected by the tragedy of infected blood. I have corresponded with many of those affected, and their MPs; they each have their own story to tell. I have reflected carefully on all of this in developing the principles upon which the consultation is based. These are that:
we focus on those who are infected
we are able to respond to new advances in medicine
we provide choice where possible
we maintain annual payments to everyone currently receiving them

This consultation is an opportunity for all those who have been affected to have their say, and it’s really important this extends to those quieter voices who we hear from less often.

It would not be appropriate for me, nor will I have the time Mr Deputy Speaker, to go through the whole consultation document today but I would like to highlight some of the key components.
The infected

There is a large population within the infected blood community who currently do not receive any regular financial support, these are the people with hepatitis C. I believe it is important that everybody receives support from the new scheme, and that this is linked to the impact that infection has on their health.

I therefore propose that all those registered with the schemes with hepatitis C at current stage 1 would be offered an individual health based assessment. Completion of this assessment would determine the level of annual payment received. This would also apply to anyone who newly joins the scheme.

The consultation document outlines our proposal that those who are currently receiving annual support would have their payments uplifted to £15,000 a year. Those who are co-infected and currently receive double payments would continue to do so.

Mr Deputy Speaker, I often hear that people are unhappy about applying for discretionary charitable payments and it is my hope that the introduction of new regular annual payments will remove this requirement. I am keen that those who respond to the consultation take the opportunity to answer all the questions about the support proposed for the infected so that I can make informed final decisions on the shape of a new scheme once all the responses are collected and analysed.
Treatment

During the urgent question on 16 December I said that I was interested in the opportunities offered by the advent of simpler and more effective treatments that are able to cure some people of hepatitis C. The NHS is at the start of its programme to roll out the new hepatitis C treatments recently approved by NICE. As members of this house will know, the NHS must prioritise treatment on clinical need and not on route of infection. While this will mean that some in the infected blood community will be eligible for treatment right away, others may have to wait.

More than anything I want, if we can, to give the chance to limit the impact of hepatitis C on this affected community. Over recent months I have received many letters from people expressing a wish to halt the progress of their infection. One of many letters that particularly struck me, Mr Deputy Speaker, asked simply: “please make me well.”

So my intention is that through the new scheme we can provide an opportunity to enhance access to treatment, especially for those who fall just short of the current criteria for the NHS. I would hope that we could treat more people if finances allow.

That is why the consultation is seeking views on offering treatment to those with hepatitis C in the infected blood community who will not yet be receiving treatment on the NHS.
The bereaved

In keeping with the principle of offering choice where possible I am pleased to announce that we are consulting on a choice of options for the bereaved.

Currently bereaved partners or spouses are eligible to apply for means tested support from the charities. As I have said I have heard concerns from many people who do not like having to apply to charities. With that in mind the consultation offers the choice of continued access to discretionary support or a one-off lump sum payment for the bereaved, based on a multiple of their current discretionary support.

There are questions on this in the consultation document and I am keen to hear from those affected so that I can understand their preference.
One scheme

Having listened to the concerns about the complex nature of the 5 schemes, the consultation proposes that, following reform, there will be one scheme run by a single body. That body will have access to expert advice including from NICE, so that we can keep pace with any new advances in treatment, for hepatitis C and HIV which emerge.
Next steps

The consultation published today will run until 15 April. This is a 12-week consultation to ensure that all those who wish to respond have time to do so. Those who read the consultation document will see that there a number of questions on the proposals on which I would welcome views.

I recognise that there has been disappointment that we have not consulted sooner. The outcome of the consultation will be crucial to inform our final decisions about how to proceed and I give the house, and those affected, my commitment that we will proceed as rapidly as possible to implementation thereafter.

We need, as a priority, to make progress in rolling out the health assessments as quickly as possible; ensuring people get access to the support and clinical advice they need. However, I should be clear that my intention is that annual payments for the current stage 1 cohort be backdated to April 2016 regardless of when each individual’s assessment takes place.

This is the first time that government is consulting fully and widely with the entire affected community, and all those who may have an interest, on the future reform of the scheme. In developing proposals to include within the consultation I have taken account of points I have heard during debates in the house, correspondence sent to me, as well as my discussions with the APPG and views gathered during pre-consultation engagement.

The consultation is now open and it is my hope, Mr Speaker, that all those affected by this tragedy will respond and that we can move forward from here. I commend this statement to the house.

Source

Tainted-blood victims not told about compensation availability

Tainted-blood victims not told about compensation availability

Ian MacLeod, Postmedia NewsPublished: Sunday, July 17, 2011
OTTAWA - At least 200 potential victims of Canada's tainted-blood scandal have never officially been informed they could be entitled to thousands of dollars in compensation.

Only recently, and a decade after the Canadian Red Cross Society put more than $70 million into a trust fund for people who received diseased blood transfusions, did the fund's trustee learn that no public notice was ever given about the availability of one portion of the fund.

The mix-up is the latest indignity in Canada's worst public-health scandal, in which thousands of hemophiliacs and transfusion recipients contracted HIV/AIDS, hepatitis C and other diseases in the 1980s and early 1990s.
The fund was set up by the courts after the charity sought bankruptcy protection in 1998. A $500,000 sum was made available to victims who contracted blood-borne illnesses other than HIV, hepatitis C and Creutzfeld-Jacob Disease (CJD). It is called the "Other Transfusions Claims Trust" or OTC Fund, one of five comprising the overall trust.

Apparently, however, no one told potential victims of the OTC money or the claims procedure, according to recent evidence in an Ontario court.
Likely as a result, only two individuals made OTC Fund claims. Each received the $10,000 maximum.

Now, with the OTC Fund set to expire Oct. 5, an Ontario judge has granted a one-year extension, while officials scramble to get the word out and administer any resulting claims.

"It appears that general notice of the existence of the fund was not given to potential claimants," Ontario Superior Court Justice D.M. Brown said in a written decision released this week.

"From the evidence filed, it is apparent that virtually no steps have been taken to give general notice about the existence of the OTC Fund, no claimants ever approached the trustee or his counsel about the OTC Fund and, over the course of 10 years, only two claims have been made.

"Not to extend the (deadline) would impair the effectiveness of the fund and deny access to that fund to eligible claimants who, through no fault of their own, had no knowledge about the existence of the fund."
The application for an extension was brought by the fund's trustee, Peter Cory, a former Supreme Court of Canada justice.

In the reasons for his decision, Justice Brown said before the trust fund was sanctioned, the bankruptcy monitor for the Red Cross, "gave general notice to potential transfusion claimants of the need to register to obtain materials regarding the procedure to file proof-of-claim forms.
"The monitor's proof-of-claim form gave claimants three options by which to describe the nature of their claim: (I) hepatitis C; (ii) HIV; or, (iii) 'Other'. The deadline for the submission of those forms was July 23, 1999.

"Evidently the trustee and his counsel only recently learned that the monitor's proof-of-claim form contained an 'Other' box. Inquiries with the monitor have disclosed that it received 213 proof-of-claim forms on which the claimant made a marking in the 'Other' box."

About 2,000 hemophiliacs and transfusion recipients contracted HIV/AIDS, while another 20,000 recipients of blood and blood products contracted hepatitis C.

In 1997, a royal commission headed by Justice Horace Krever concluded the federal government, provinces and the Red Cross took too long to respond to the emerging threats of blood-borne AIDS and hepatitis C. His chief recommendation was that all victims, not just those who contract AIDS, be compensated.

He described a number of diseases which could be transmitted by the transfusion of blood, apart from CJD, hepatitis C and HIV, and the evidence presented in the Ontario court action suggested the OTC Fund was intended to compensate persons who contracted those other diseases.
Governments, the Red Cross and insurance companies responded by creating various compensation programs and settled class-action law suits. Hundreds of millions of dollars have been paid to thousands of victims.
In 2005, the Canadian Red Cross pleaded guilty to a single regulatory charge and was fined $5,000.
Ottawa Citizen

'Bad Blood: A Cautionary Tale: Documentary Coming to PBS Stations in June

'Bad Blood' Documentary Coming to PBS Stations in June

"Bad Blood: A Cautionary Tale chronicles a frightening time in our nation's history when our blood supply was breached by both AIDS and hepatitis. Through the eyes of survivors and family members, Bad Blood tells how a "miracle" treatment for hemophilia became an agent of death for 10,000 Americans. Faced with evidence that pharmaceutical companies and government regulators knew the product was contaminated with deadly viruses from the 1960s through the early 1990s, the hemophilia community launched a powerful and inspiring fight to right the system that failed them and make it safer for all.

"The lessons learned from this tragic time should not be forgotten," says Make Skinner, president of the World Federation of Hemophilia. "Out of this tragedy and similar experiences worldwide, a new era of safe and effective treatment products emerged. However, there is a continual need for worldwide vigilance to prevent history from being repeated."

The bleeding disorders community continues to stand as guardians of the nation's blood supply using the history recounted in 'Bad Blood' as a call to arms for continued vigilance today.

The broadcast is scheduled for June 2. Check your local listings at http://www.badblooddocumentary.com/broadcasts or contact your local PBS station and ask them to broadcast 'Bad Blood: A Cautionary Tale.'

HCV/HIV: The Blood Scandal Of 1970

The timeline, and links on the blog today will cover mostly the Irish/British Blood Scandal, later in the month this blog will go over the Canadian scandal in more detail.

The Irish Blood Scandal:

1970
In the 1970's thousands people were infected with Hepatitis C and HIV through blood transfusions and blood clotting products . In Ireland the majority of victims were women who contracted HCV when they received a tainted blood product called Anti-D during pregnancy.

The UK

From the tainted blood scandal 4,670 haemophiliacs in the UK were given blood contaminated with hepatitis C. Of those people there were 1,200 also infected with HIV. This blood came from the United States, from drug users and prison inmates.

The UK Blood Scandal : ARKANSAS BLOOD SCANDAL STILL DRIPPING and mid-1980s, as contaminated blood flowed from Arkansas inmates to other countries, then-Governor W.J. Clinton sat on his hands despite evidence of severe mismanagement in his prison system and its medical operations. . .

In 1991 a national screening campaign began in Ireland and was ran under the direction of the Irish Blood Transfusion Service Board. In February 1994 they found batches of anti-D immune globulin had been contaminated with HCV between 1977 and 1978.

1995 Ireland's Hepatitis C scandal goes back over eighteen years. Hundreds of people have been infected by contaminated blood products. 'The Irish Press'

1997 - The gross negligence of the State and its agencies in relation to the hepatitis C scandal was fully documented in last April's report by Mr Justice FinlayFrom The Irish Times - Sat, Aug 02, 1997 - THE STATE AND BRIDGET

1998 - About 60000 Canadians who received blood transfusions contracted hepatitis C. From Telegraph Herald : FOREIGN BRIEFS

1999 : The Infected Women
Data from these women published in the Eurosurveillance/Europes Journal on infectious disease in 1999 found that" seven hundred and four (1.1%) of 62 667 women who had received anti-D between 1970 and 1994 and were surveyed had evidence of past or current HCV infection . HCV-RNA was identified in serum of 390 of the 704 using reverse transcriptase polymerase chain reaction.

These were offered clinical assessment and treatment and 376, aged 34 to 60 years (mean 45 years) at the time of screening, were evaluated.

Ninety-eight per cent (356/363) of women who underwent liver biopsy showed liver inflammation, 51% (186) had fibrosis, and 2% (seven) had probable or definite cirrhosis. Serum alanine aminotransferase concentrations were elevated in 55% of women. One or more symptoms were reported by 81% of women (304): 66% fatigue (248), 38% arthralgia or myalgia (143), 16% anxiety or depression (60), (6%) right upper-quadrant pain (23), and 5% rashes (19).

2000 THE BLOOD transfusion scandal has taken a dramatic new twist after internal board documents warned that incomplete information provided to a formal Dáil investigation ran the risk of TDs being seriously misled. From Blood clinic scandal takes a dramatic twist - National News, Frontpage -

2002 - Eight years on from when the original hepatitis C scandal first became public and after two Tribunals of Inquiry, the Irish Blood Transfusion Service (IBTS) remains in crisis. From Blood - the never ending scandal

2003 - A confidential report prepared by the Blood Bank has found there is no evidence to suggest that women infected with Hepatitis C - outside of two specified risk periods - contracted the virus from the Irish anti-D blood product. From RTÉ News: New report on Hepatitis C scandal -

2006 Since the scandal came to light, those affected have been involved in a fight for justice. From RTÉ News: Calls to reject bill for infection insurance

2008 The latest revelation about lost data is less serious in its scale, but raises different questions about the service's management. From Service's practices comes under the microscope again - National News

2009 - The Australian - Payout call over blood scandal "The compensation should be at least as much as the payments under an Irish government program. From tainted blood.info

2010 The inquiry recommended that British victims be compensated on the same level as those in Ireland, where those who contracted hepatitis C were paid on average £ 750000 and those infected with HIV received £101000. Composer wins a rethink over cash for blood victims - Times Online

From England

Contaminated blood campaigners take to the streets of Westminster on 30th June 2010.This superb piece of journalism, was created by Alex Terrell, who attended the Demonstration in London.

On october 14th 2010 in an article reported online that Public health minister Anne Milton said she she was 'deeply sorry' about the events that led to the infection of patients in the Seventies and Eighties. In the same article Ms. Milton said the scandal would cost £3bn and was not possible because of the current climate.

The Data Base

Today as of October 21st 2010 the efforts of monitoring the victims continues through the " National Hepatitis C Database Steering Committee". An article written by Lloyd Mudiwa in the Irish Times quoted Michele Tait, Chair of the Committee as saying "ongoing efforts to improve participation rates and the quality of the data collected for the database were “especially important” at this time, given that participants have been infected for an average of 30 years and most were now aged over 50 years. Based on the data collected in 2008 showed that"the majority of participants, including those chronically infected, did not show evidence of having serious liver disease". Also the article found that 188 participants had died, an additional 15 since the data collected in 2007.

To all the families who lost their loved ones, please except my heartfelt condolences .