House of Commons Hansard Debates for 24 Feb 1997 (pt 33)

Orders of the Day

10.30 pm

Mr. David Hinchliffe (Wakefield): I am grateful for the opportunity to raise my concerns about Creutzfeldt-Jakob disease and human growth hormone treatment. Because of the clear connections, I hope that it will be in order to include some reference to concerns about the health aspects of new variant CJD.

My concerns are shared by many hon. Members on both sides of the House. A meeting was held last week to consider the matter on a cross-party basis. I am grateful for the attendance at the meeting last Tuesday of several hon. Members, some of whom are present tonight, including my hon. Friends the Members for Wallasey (Ms Eagle), for Barnsley, Central (Mr. Illsley) and for Cambridge (Mrs. Campbell), and my right hon. Friend the Member for Chesterfield (Mr. Benn).

I shall to set out briefly the background to this unfortunate affair. I imagine that the Under-Secretary of State for Health, the hon. Member for Orpington (Mr. Horam), will differ little with me on the historical facts. The human growth hormone programme began in 1959, after pilot studies undertaken on behalf of the clinical endocrinology committee of the Medical Research Council. In view of the results of those studies and developments in the United States, the CEC supported clinical trials of human growth hormone derived from pituitary glands as a treatment for growth hormone deficient children who would not otherwise have grown normally. The 17-year trials began under the direction of the MRC in 1959, and during that period it was responsible for all aspects of the work. When the trial was completed in 1979, the Department of Health and Social Security, as it then was, assumed responsibility and the trial ran for a further eight years.

By the end of 1976, a total of 642 children had been treated in the programme, which had demonstrated obvious success and became a standard treatment for failure to grow. From 1977 to May 1985, a further 1,243 children were treated, making a total of 1,885.

The programme was halted in 1985 after human growth hormone was withdrawn in the USA following the deaths of three recipients through CJD. It had been known since 1968 that CJD was transmissible, and contamination of human growth hormone by CJD was suspected. In April 1985, the first death from CJD in a recipient of human growth hormone in the United Kingdom--Alison Lay--was reported. The use of cadaveric human growth hormone was suspended in the UK during the following month, when 865 people were undergoing the treatment.

It is now clear that the human growth hormone was contaminated with CJD from some of the pituitary glands removed from almost 1 million human corpses used between 1959 and 1985. From projections of the incidence of CJD in the UK population, it has been suggested that as many as 200 pituitary glands from cadavers affected by CJD may have been used.

The Minister will be familiar with the detailed arguments presented last year in the High Court on behalf of the families of those affected, which concentrated on the known risk of CJD transmission and the methods of

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both the selection of cadaveric material and its extraction and purification. He will be aware that the judge concerned found that there had been negligence in the failure to act on clear warnings regarding the risk of contamination by CJD issued to the MRC in October 1976 and the failure subsequently to act on those warnings in the early months of 1977. He eventually ruled that negligence could be established in those cases where patients had started treatment after 1 July 1977.

The Minister is aware that that judgment excludes the cases of most of those who have died and of those who are still well but whose lives have been ruined by fear of developing CJD--the "worried well", as they have been termed. Their grievance is understandable in the light of that ruling because the human growth hormone was produced and administered entirely under the authority of the Minister's Department. Mortuary attendants collected and supplied pituitary glands, which were processed into cadaveric human growth hormone by Government servants. It was then prescribed by doctors working wholly within the national health service, who were unaware that the product had never been given a licence by the Committee on Safety of Medicines.

The Department of Health's processing committee, which oversaw preparation, became aware in 1976-77 of concerns that the product carried an unquantifiable risk of an untreatable fatal disease but failed to communicate that concern to the clinical committee that oversaw the treatment programme. Children treated after 1 July 1977 were treated on the false premise that they were receiving safe treatment with a product regarded by their doctors as having pharmaceutical quality. There is no dispute whatever that CJD among those patients treated with cadaveric growth hormone before 1985 had been caused by the infectious agent given during NHS treatment.

The Minister will recall that on 6 November I brought a delegation to his Department comprising the parents of three young people who died of CJD following human growth hormone treatment, and their legal representative, Mr. David Body. The parents included Alison Lay's mother who, on behalf of herself and others, expressed concern about the circumstances of the families of those victims whose treatment had commenced before 1 July 1977. In response to that point, the Minister advised me subsequently, in a letter dated 12 November 1996, that in relation to compensation it was not appropriate to go beyond the terms of the court judgment.

Exactly a week ago, the House debated the BSE crises on an Opposition motion drawing attention to the Government's handling of an affair which so far has cost the British taxpayer £3.5 billion. Included in that figure is the amount of compensation paid to the livestock industry, which exceeds £1 billion. On the following morning--last Tuesday--with some hon. Friends who are present today, I sat in a room with the parents of a young man who had died from CJD through human growth hormone treatment, and with a young woman whose husband died last year from new variant CJD. The woman has two young children, one of whom was born a week after her husband's death. Both families have gone through the tragedy of caring for a loved one dying from CJD, but the young mother faces the additional burden of the constant worry about the possible consequences for her own health and that of her children.