My Lords, I beg to move that the Bill be now read a second time.
We are met to debate a measure conceived and drafted to give solace and support to arguably the most needful minority in Britain today. A small and stricken community of barely 5,000 people-already disabled by a rare, life-long blood disorder requiring continuous medical treatment-haemophilia patients have twice been infected en masse by contaminated blood and blood products used in their NHS treatment. Ninety-five per cent were infected with hepatitis C and one in four with HIV.
Of the 1,243 haemophilia patients infected with HIV only 361-29 per cent-are still alive; and the much higher number of deaths among the hepatitis C-infected patients is still increasing. As of now, an estimated 1,974 haemophilia patients have died from being infected by contaminated NHS blood and blood products in this worst-ever treatment disaster in the history of the NHS. If anyone disputes that assessment, they should look at the finding of distinguished statisticians that the disaster involved the haemophilia community in a loss of life more savage in proportion to the numbers of people at risk than the Black Death. While stigma is less explicit today than the warning cross scrawled on a plague-victim's door, it is no less cruelly oppressive in terms of social exclusion at a time of direst need.
Yet even the grievous and still ascending death toll does not tell the whole story of the suffering inflicted on the haemophilia community. As my dear and inspirational friend the noble Baroness, Lady Campbell of Surbiton, whose husband was among the haemophilia patients fatally infected, so movingly said in this House on
""mothers, fathers, sisters, brothers, wives, husbands and friends ... seeing their loved ones die".-[Hansard, 23/4/09; col. 1614.]
For parliamentarians, there can be no higher duty than to ensure just treatment and due care for people afflicted and bereaved by life-threatening medication supplied by the state; but as participants in this debate know, infected haemophilia patients, many of them now terminally ill, also suffer privation at a depth most other people can barely imagine. They speak day by day to me of no longer being able to work full-time, if at all; of having been made uninsurable by the prohibitively expensive premiums demanded of them by insurers; and, among numerous other burdens, of costs generally being too high for them to cope with.
I am most deeply grateful to all noble Lords who will be speaking in the debate, including my good and noble friend Lady Thornton, who will be replying for the Department of Health. Her awareness of the depth of anguish and despair in the haemophilia community is well understood across the House.
I want at the outset today also most warmly to congratulate my noble and learned friend Lord Archer of Sandwell on the highly prestigious Outstanding Achievement Award he received at this year's parliamentary awards ceremony three days ago. The award was backed by a very wide range of charities, as well as by Members of all parties and of none both here and in another place, for parliamentary service of the highest distinction, and nowhere is that distinction more clearly exemplified than by the landmark importance of the independent public inquiry he headed into the contaminated blood disaster.
I have two interests to declare in the debate, not pecuniary, as president of the Haemophilia Society and as the architect of the inquiry conducted so skilfully and with such excelling integrity by my noble and learned friend. As he knows, I am grateful beyond words both to him and his colleagues on the inquiry team: Dr Norman Jones, emeritus consultant physician at St Thomas's Hospital and Judith Willetts, chief executive of the British Society for Immunology. No inquiry team could possibly have shown more commitment or have been more eminently qualified for the arduous task they so readily and so ably undertook, entirely without remuneration.
I will comment on the Bill clause by clause as we proceed but, taken together, they transform the Archer report into the language of legislation; and my purpose in working during the Summer Recess to prepare this Bill, with unstinting help from Sarah Jones of the Public Bill Office, and on medical issues from Dr Norman Jones, was to guarantee parliamentary time for this House now to debate the Government's response to the report of the inquiry.
Together with noble Lords who took part with me on
"Furthermore, we will of course assist as far as possible in securing a debate on the Government's response".-[Hansard, 28/4/09; col. 143.]
Yet in the three months that then elapsed before the Summer Recess there was no sign anywhere on the parliamentary horizon of a debate being arranged. So there was nothing precipitate in my decision to spend much of the Recess addressing the tasks involved in having this Bill ready for a First Reading in your Lordships' House by
The privation I have described among those affected is addressed in Clause 4 of the Bill, which deals specifically also with the crudely discriminatory treatment now of widows of infected patients in deciding whether they are eligible for financial help solely on the basis of when their husbands died, even where they died within two days of each other from exactly the same cause. The ending of that discrimination was one of the issues of longstanding concern to the haemophilia community strongly and repetitively emphasised in evidence to the Archer inquiry. I mention it first today, in referring to Clause 4 of this Bill, because several of the widows excluded from help who wanted very much to be here for this debate have contacted me to say that they simply could not afford the fares; and at a time when just five NHS officials are seen to have been paid a total of almost £6 million over the past year.
Clause 4 addresses the whole range of compensation issues and has been welcomed as fair and balanced by commentators on social policy of wide experience, as was the Archer report itself all across the media. Everyone knows that there will be costs in giving full effect to the report, but there will also be priceless benefits in enabling haemophilia patients to live fuller and more fulfilling lives. Clause 1 of the Bill creates a widely empowered statutory committee, with patient and family representation, to advise government on the management of haemophilia; and Clauses 2 and 3 deal with blood donations and improving medical care, while Clauses 5 and 6 are about monitoring progress and the effects of regulations made under the legislation.
Turning to issues not dealt with in the Government's response to the Archer report, but worthy of close attention in this debate, there is the spectre now of a third deadly scourge facing haemophilia patients. In response to Parliamentary Questions about the growing number of haemophilia patients known by the Department of Health to have been treated with blood from donors who have since died of variant CJD, I was told on the authority of the Chief Medical Officer that the risk of infection in such circumstances was purely "hypothetical". That demonstrably is not the case today, a post-mortem on a hepatitis C-infected patient having found variant CJD in his spleen; and Ministerial Statements made to Parliament on this further scourge urgently need updating. We also need to know how the Government now assess the variant CJD threat to the haemophilia community.
As the House knows, the Archer report is about more than the unmet needs of infected patients and bereaved families. It addresses also highly disturbing administrative shortcomings, serious omissions and a failure to inform Parliament of the facts on why provision made in other countries is so much better than here in Britain. For example, there is no mention in the Government's response to the Archer report's findings on the behaviour of the Blood Products Laboratory in failing to comply with requirements of the Medicines Act 1968. This is a hugely important issue as is that of the effect of using Crown immunity to avoid any question of legal redress.
The Archer report states:
"In July 1979, the Medicines Inspectorate visited BPL, following which they reported that the buildings were never designed for the scale of production envisaged and commented that, if this were a commercial operation, they would have had no hesitation in recommending that manufacture should cease until the facility was upgraded to a minimum acceptable level".
Starkly, the Archer report then states:
"BPL was rescued by Crown immunity", adding that:
"BPL's existing plant continued production, relying on Crown immunity to dispense with all the requirements of the Medicines Act, but was able to meet only 40 per cent of the national requirements".
That can only mean that by the use of Crown immunity, a relic of feudal England, the lives of countless haemophilia patients were put blatantly and gravely at risk.
The seriousness of this had already been underlined by my noble friend Lord Darzi himself. When responding to exchanges about thalidomide on
"the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly".-[Hansard, 10/3/09; col. 1059.]
Could there be any clearer text than that for condemning the BPL's use of Crown immunity to dispense with all the requirements of that renowned and so vitally important statute?
From whom was the BPL rescued by its use of Crown immunity? First, of course, it was rescued from those afflicted and bereaved by the disaster. At a stroke they were denied any right to legal redress, a denial made all the more cruelly unjust by the refusals of successive Governments to hold a public inquiry. They were left with no hope of any independent assessment of where responsibility lay for their plight until the Archer inquiry was announced. Of course, the BPL itself was rescued from any danger of censure by the courts.
Crown immunity was abolished by John Major in 1991, and the afflicted and bereaved ask why, since the present Government clearly have no intention of reinstating Crown immunity, they cannot now review the claims of those from whom the BPL was rescued by that immunity.
The noble Lord, Lord Thomas of Gresford, who is much respected here and outside the House for his role in this policy area, said in a speech on
At the very least, Ministers could review the claims, where it is still feasible to do so, of the victims of contaminated NHS blood from whom the BPL was rescued by Crown immunity. If anyone thinks there is no way now of our being able to do any more to help the afflicted and bereaved, they should look at how the Irish Government found ways of compensating victims there by more than anything even contemplated by Ministers for NHS-infected patients.
Let me first, however, make it absolutely clear that the Government of the Republic did not, as stated in this House by my noble friend Lord Warner, briefed by and speaking for the Department of Health on
"set up their hepatitis C compensation scheme following evidence of negligence by the Irish blood transfusion service".-[Hansard, 25/3/04; col. 796].
That is untrue.
"a judicial inquiry in Ireland found failures of responsibility by the Irish blood transfusion service", had,
"concluded that wrongful acts had been committed", and that the Government of the Republic,
"decided to make significant payments to those infected". -[Hansard, Commons, 1/7/09; col. 130WH.]
Brian O'Mahony, chief executive of the Irish Haemophilia Society, who was personally involved in the negotiations with the Department of Health and Children in Ireland in 1994 and 1995 which led to the establishment of a Hepatitis C Compensation Tribunal on a statutory basis on
He goes on to say that the Compensation Tribunal heard its first cases in early 1996 and that the first award for persons with haemophilia was made in March 1996. He concludes:
"Therefore the establishment of the Hepatitis C Compensation Tribunal, and significant payments by the Tribunal, pre-dated the setting up of both the Finlay Tribunal established in October 1996 and the Lindsay Tribunal of Inquiry set up in September 1999".
I also have a letter also from Kay Maher of the Republic's Department of Health and Children confirming Brian O'Mahony's statement, which concludes:
"I hope this will serve to clarify the sequence of events in Ireland for Ms Merron and I trust that her department will now correct the record".
I look forward to hearing the department's response to that extremely important request.
To conclude, I want briefly to mention two further issues: first, the treatment by the Department of Health of the Archer inquiry's call for help in securing the financial future of the Haemophilia Society, faced as it is by ever-increasing requests for assistance while, at the same time, trying to cope with the punitive 70 per cent cut made recently in its government grant. That the inquiry's call has not already been met appals noble Lords in all parts of the House. I am especially grateful to the noble Baroness, Lady O'Cathain, for her active support on this issue.
Finally, I want to make it clear in today's debate that sadly, as well as anguish and despair, there is evidence now also of anger in the haemophilia community about the treatment of the Archer inquiry and its report. It was five weeks ago that a then terminally ill, now deceased, haemophilia patient who gave evidence to the inquiry said to me: "While we crossed the whole of Britain to meet the Archer inquiry, Health Ministers refused even to cross the road to do so".
In the interests of creating hope in place of anger, let me assure the haemophilia community as a whole that it has in this House both a ready understanding of its despair and an unbreakable resolve that if this struggle has to go on, then go on it will until right is done. I beg to move.