Contaminated Blood (Support for Infected and Bereaved Persons) Bill [HL]

Baroness Rendell of Babergh Excerpts

Friday 22nd October 2010 Lords Chamber

[Baroness Rendell of Babergh]

My Lords, I will be brief. It is Friday morning and—however serious and important the question under discussion, and this one is very serious indeed—no one wants to be too long detained. The position of those of us who support the Bill has been made very clear by my noble friend Lord Morris of Manchester and, in his report, by my noble and learned friend Lord Archer of Sandwell. We have already heard eloquent and informative speeches from four other noble Lords. I shall not, therefore, speak of statistics or the large sums of money, which have been mentioned in discussion of what levels of compensation would cost the taxpayer, or do more than touch on the clinical and medical aspects of haemophilia and its amelioration.

I am only speaking at all because I believe I am in a unique position to talk about haemophilia and those afflicted by it. Some 10 years ago I wrote a book—a work of fiction—that centred on what I called the two strands of inheritance: the inheritance of a peerage and the inheritance of a disease. This was at the time of the House of Lords Bill, and inheritance of a peerage was very much to the fore in debates in your Lordships’ House. As to haemophiliacs, their sufferings were by then being alleviated, if not cured, by modern medicine.

My book was in part a historical novel. It dealt with haemophilia in the late 18th and early 19th centuries, as well as later manifestations of the disease. I went into the peculiar nature of its genetic inheritance carefully, since many previous writers had made mistakes in this area. For this very reason I researched the whole subject with great care, investigating the discoveries made and the progress achieved at various American universities. I also used your Lordships’ Library and travelled to south-east Switzerland to see what I could discover in a village which had once been, but was fortunately no longer, the home of many sufferers from this tragic blood disease as a result of contiguity and in-breeding.

What I carried away from all this research, apart from what I needed for my novel, was an abiding indignation that, just as effective treatment was successfully allowing haemophiliacs to lead almost normal lives, these sufferers were being afflicted from an unsuspected, indeed bizarre, source. The blood that they needed—a life-giving elixir—was contaminated with some of the worst diseases known to man: HIV, hepatitis C and, perhaps worst of all, human-variant CJD. It was, in fact, death dealing. My novel ends with the descendants of those 18th century haemophiliacs leading full and active lives—the men knowing that their daughters will be carriers, the women aware that all or some of their sons will be haemophiliacs—but wise enough to become parents through adopting children. None of them could have dreamt, in fiction or in fact, that a triple plague could be visited on them through medication. None of them, in fiction or in fact, would have believed that they would have such huge premiums demanded of them by insurance companies as to be made virtually uninsurable.

When I wrote to the Guardian and the Times on this subject at the time of my noble friend Lord Morris’s earlier Bill in December 2009, outlining the tragic results of contaminated blood transfusions, I received many letters from readers. Most were from the widows and other dependants of infected people, describing how they had suffered as a result of losing the family breadwinner, which often meant also losing their homes. One told me that I was wrong to write of HIV/AIDS as being a serious disease, since so much effective medication was now provided for its victims. I hope such a view is not generally held and is not an opinion shared by opponents of the new Bill, who might then extend that principle to hepatitis C and CJD. These are terrible sufferings—even the stress and fear occasioned by HIV, as mentioned by the noble Baroness, Lady Finlay—and they are made all the worse for those afflicted, and the widows, children and families whom their deaths have left behind, by the knowledge that these diseases were received through being given the blood of drug addicts and of inmates of US prisons.

My researches taught me a great deal about haemophilia. I would not have the temerity to say that they showed me what it is like to have the disease. They did, however, teach me exactly what those sufferings may be and how to a great extent sufferers may be exempted from them by transfusions of suitable and uncontaminated blood. The transfusions received by those whom my noble friend Lord Morris has called “a small and stricken community”, which were supplied by the NHS, have unknowingly killed nearly 2,000 of them. These people were ill already. They already had a depleted lifespan. Haemophilia itself is bad enough, a daily disablement, but the treatment they were given was a case of adding insult to injury.

This is not a political issue—it makes no difference whether one belongs to the right, the left or in-between—but a moral issue. Those who took part in the previous Bill introduced by my noble friend Lord Morris—I was not among them—and those who have spoken today, have explained the situation and gone into detail, presenting various aspects of the disease and what can be done to ease it. They did so from a sense of moral indignation and resentment on victims’ part, and from a powerful sense of justice, for no explanation for the sake of clarity has been necessary. The issue is so clear that a small child could have understood it, as children can always understand what is right and what is wrong, what is fair and what is deeply unjust.