BONE MARROW (TRANSPLANTATION) (Hansard, 19 November 1976)

§ Mr. Keith Speed (Ashford)

The subject that I have the privilege of raising in Parliament today is literally a matter of life and death. A young constituent of mine, Anthony Nolan, is looking forward to his fifth birthday next month. It is quite possible that he will not live to see it, and his chances of celebrating his sixth, seventh or eighth birthdays are slim.

Anthony was born with a bone marrow disease. He is being kept alive by drugs and by the devotion, care and hard work of his mother, Mrs. Shirley Nolan, who is also a constituent of mine. Anthony has no resistance to infection. A common cold could, indeed, kill him. He has to live at home, in almost total isolation, without young friends or companions and without seeing the outside world. As a parent of young children myself, I can fully appreciate the strain imposed on his mother in literally keeping her son alive.

Alas, Anthony is not the only child with this disease. I have been given estimates of between 200 and 300 children per year who are in a similar situation in this country alone, and there are probably as many children and adults suffering from aplastic anaemia who need treatment to enable them to live.

The treatment for all these people is a bone marrow transplantation from a healthy person into the bloodstream of a patient. This life-saving operation has been pioneered by Westminster Hospital. I pay a full and deserved tribute to the team that has developed it. Already as a result of this work young people such as Simon Bostic are cured and leading a normal healthy life. Simon was lucky that his tissue was an early one which was identical in a donor.

Before the transplant can take place, volunteer bone marrow donors have to be screened so that a suitable compatible donor can be found. If the bone marrow is not entirely compatible, it will be rejected and, therefore, valueless. Indeed, 1799 in certain circumstances unsuitable grafted marrow could attack the patient and make matters very much worse.

The problem, therefore, is to build up a master register or library of tissues, with their donors, which can be precisely matched with the patient. Unfortunately, there are about 50,000 different tissue-type combinations, and it is a mammoth task to build up the register.

When Mrs. Nolan, Anthony's mother, several years ago discovered that there was no money available to continue to tissue-type volunteer donors to try to help her son, and others like him, she set to work to establish a trust fund to finance a laboratory to carry on the work of tissue-typing which had been taking place at Westminster Hospital.

Mrs. Nolan's hard work and dedication have led to the Anthony Nolan Bone Marrow Appeal Registered Trust being set up. It is an entirely voluntary effort and, with the traditional generosity of the British public, the trust is raising the £36,000 a year needed to finance the laboratory which is testing and typing more than 100 people a week. As far as I know, this laboratory and register being built up are the only ones of their kind in existence, and the only ones that can try to match suitable donors for those hospitals with patients for whom a bone marrow transplant is urgent, vital, and often the only hope of recovery.

Elsewhere, and particularly abroad, the arrangements are that blood donors are tissue-typed and then, if they are found suitable for a patient needing a transplant, they are asked to donate bone marrow. The volunteers under the Nolan laboratory here in this country know from the start that they are being asked to join a bone marrow panel.

This privately financed work has a direct spin-off into the National Health Service, and various hospitals—including particularly Westminster Hospital—have been getting successes as a result of the work done on tissue-typing so far. In addition—I do not want to over-stress this—I understand, having spoken to medical consultants, that there is a possibility that this work could well be of vital help in the treatment of leukaemia. I understand that the Department of Health will eventually have a testing ser- 1800 vice in blood transfusion centres, but there are no plans for supporting hospital laboratories of the type now being run by the trust—and time is now of the essence.

My first question to the Minister is whether he will explain the lack of involvement of the NHS in this vital lifesaving work. In letters to the general public, the Department has stated that the search to build up the register is being carried out as strenuously as possible, but, frankly, this is not so at the moment, and many people find it difficult to understand why the Health Service in this country has not been involved in this kind of work.

My second point is that the laboratories are now established in St. Mary Abbots Hospital in Kensington. I appreciate the help that the area health authority and others have given to get this accommodation. I understand that the rooms being used were not used before, and therefore there is now a more efficient utilisation of resources. I should like the Minister to confirm that his Department will do nothing to upset this arrangement and, indeed, will wish to encourage it in every way possible.

However, the total cost of all the equipment, including the microscope, is about £110,000. It is vitally needed now. I fully appreciate the public expenditure contraints on the Minister, and I know that if I ask for the National Health Service to buy the equipment I shall get "No" for an answer. I am, therefore, being realistic, and have so advised the trustees.

My proposal is that the money should be lent to the trust on a properly drawn up legal agreement. The trust would even be prepared to pay a commercial rate of interest if the Department insisted on it. The trustees believe—and I think they are right—that the debt could be cleared off very quickly because they are already having to find £36,000, that is, £3,000 a month, to finance the present slower rate of work.

I feel that the public would rally round to clear this debt in record time, becauses their response has already been remarkable and it is not often that the ordinary citizen can make a contribution, no matter how modest, which can directly save 1801 children's lives. The National Health Service would benefit fully from all this, and, internationally too, we could help patients abroad.

This is a terribly emotive subject. I have not wished to over-dramatise the position. I know of the many National Health Service priorities which face the Minister and his colleagues, but I cannot believe that there is any which, for such a relatively modest outlay, would save so many young lives. I hope that red tape and bureaucracy will not cloud the issue. I am not concerned about whether my proposal is precedented. I am concerned about saving life and preventing distress and anguish.

I hope that the Minister can respond in a positive way, so that all the hard work which Mrs. Nolan, the trustees, the Westminster Hospital and the thousands of volunteers throughout the country have already done will be the foundation for urgent and effective action to solve as soon as possible the problem of tissue-typing. This will enable Anthony Nolan and many others to be cured and to have a happy normal life.

§ The Under-Secretary of State for Health and Social Security (Mr. Eric Deakins)

I am sure that the House will be grateful to the hon. Member for Ashford (Mr. Speed), first, for raising this matter, and, second, for the way in which he has done so. As he said, it is an emotive subject. I can well understand the anxiety which Anthony Nolan's illness has aroused, and I know that the hon. Member's concern for a successful outcome is shared by everyone acquainted with the situation. Cases such as Anthony Nolan's are particularly distressing, and it is not difficult to imagine the strain on all the people closely involved.

I think it important that in considering the issues raised by this case we are all fully informed of the state of development of bone marrow transplantation, not only in this country but throughout the world. The case of Anthony Nolan has generated a large amount of publicity in the newspapers and on radio and television. Unfortunately, the reports of the media are usually too brief for some of the major difficulties facing us to be fully and properly explained. Inevitably, most people have been left with the rather 1802 misleading impression that, if only the Government would make a bit more money available, many of these unfortunate children could soon be restored to a normal life. Unfortunately, this is not the case. I wish that it were, for then at least the answer to the problem would be clear, even though it might not be immediately attainable.

There are a number of severe diseases of the blood and of the blood-producing tissues—some fortunately very rare—which have in certain selected cases been successfully treated by bone marrow transplantation. The most common disease in this category is aplastic anaemia, and also included is the severe bone marrow disorder which affects Anthony Nolan. A child born with this disease forms defective platelets and lymphocytes and, because of this, the body's normal immune reactions do not develop normally and thus the child cannot fight the many infections which we all meet from infancy. There is also a further group of blood diseases which may in the future become amenable to treatment by bone marrow transplantation.

Bone marrow transplantation offers a number of advantages. First, the donation itself is a fairly minor procedure with the withdrawal of bone marrow through needles inserted usually into the pelvic bones. To avoid pain, a general anaesthetic is normally given and is the only risk involved apart from the rare possibility of infection. The donor rapidly expands his residual bone marrow to replace the small amount taken for transplantation.

Second, the necessary matching of donor and recipient can be undertaken under "cold" conditions. There need be no special haste, as with the procedures now available patients suffering from the diseases in question and awaiting a transplant can be supported for some considerable time.

Third, if one graft of bone marrow is unsuccessful, provided that it does not actually attack the recipient, another might easily be tried. The giving of the graft is a simple intravenous infusion, and new research might improve existing methods of making room in the patient's own bone marrow for the graft.

1803 Fourth, a successful bone marrow transplant should result in the production of normal blood cells for the rest of the recipient's natural life.

Given then the apparent relative simplicity of the procedure and the diseases which might be treated, why do we not take steps to see that all patients—many of them children—who might benefit from bone marrow transplantation are given the opportunity to receive this treatment? Why do we not establish a national panel of donors? The answer to this lies in a point which the hon. Gentleman made—the extreme complexity of the problem of tissue-typing. We all know that there are a number of different blood groups—some common, others rare—and that when somebody has to receive a blood transfusion, the blood to be transfused has to be of an appropriate group. Tissue-typing, affecting transplantation of organs and tissues such as kidneys and bone marrow, is a bit like blood grouping but it is very much more complicated as many more factors between donor and recipient are involved.

Tissue-typing is still developing and research continues to provide new knowledge. However, at the present time, the combination of the exact degree of matching required by bone marrow transplantation and existing knowledge of tissue-types means that the prospect of a successful bone marrow transplant can normally be looked for only where the bone marrow to be transplanted can be obtained from a compatible close relative of the patient. To reinforce this, I would point out that the number of documented successful bone marrow transplants using marrow from an unrelated donor in the whole world is in single figures and, according to how strictly a success is defined, may be as low as one.

It is against this background that we have had to consider the desirability of developing a national panel of tissue-typed volunteers who might subsequently be called upon to donate bone marrow. Naturally, as tissue-typing a large number of volunteers costs money, we have also had to give due weight to the financial consequences of diverting resources to this procedure, which, as I have explained, must for the time being at least be regarded as wholly experimental when an unrelated donor is involved. It is, of 1804 course, only when a compatible related donor cannot be used that a volunteer panel donor might be called on.

There are other resource implications. A person's tissue type is established by testing a sample of their blood against sera obtained from special donors, usually postpartum mothers. These sera are in very limited supply and all the possible demands for them cannot be met. At the moment the first priority for the use of these sera is kidney transplantation programme. I am sure I have no need to remind the House that kidney transplantation is an established life-giving procedure and one which I and many hon. Members wish to see develop and be provided on a wider scale.

For all these reasons, we therefore decided that the establishment of a national panel of volunteer donors could not at present be justified. This was not a decision that was taken lightly. It was taken only after consultation with the country's leading experts on all aspects of bone marrow transplantation. Nor does this mean that work on tissue-typing of potential donors must cease. Many regional blood transfusion centres undertake an appreciable amount of tissue typing of their volunteer donors in connection with other procedures, for example, transfusion of blood platelets, and they will continue to do so and perhaps expand these activities but within existing resources. All the information so obtained will be stored and if at a later date a national panel of volunteer bone marrow donors seems to be indicated it would possibly form the basis of the panel. I should point out that the directors of regional blood transfusion centres who have such files of information have already searched them to see of a donor might be found to help Anthony Nolan—but sadly, without success.

The hon. Member was good enough to give me prior notice of two points that he particularly wished to raise. On the first point—the continued availability of physical facilities for the laboratory at St. Mary Abbott's Hospital—I cannot, of course, give an indefinite guarantee. But I can say that I am aware of no current proposals to turn the tissue-typing laboratory out of its present home, and I am sure that the health authority will in the future continue to give sympathetic 1805 consideration to the laboratory's accommodation needs. Should any move need to be contemplated at a later date there would, of course, be full consultation with the charity which funds the laboratory.

The second point concerns the possibility of the Department making a loan to Mrs. Nolan's charity for the purchase of an automated tissue-typing system. It would be open to the charity to apply to the Department for a loan, although I am not aware that similar loans have ever previously been agreed for other charities and we would be obliged to charge appropriate commercial interest rates. Thus there would be no particular advantage over a loan from more usual sources.

But even if we did make such a loan and the tissue-typing was automated, it does not follow that lives would be saved. I have previously tried to explain that the fundamental problem in this case is the current state of knowledge which means that bone marrow transplantation using an unrelated donor cannot be regarded as other than a wholly experimental procedure as yet not backed by demonstrable success. This fundamental problem and that of the availability of good quality typing sera remains whether the tissue-typing is automated, itself an unproven method, or done by conventional means. Much as I sympathise with Anthony Nolan I could not, in honesty, therefore, encourage an application for a loan.

I have already mentioned that bone marrow transplantation can prove a valuable treatment. However, at the moment the benefits are essentially restricted to patients for whom there can be found a compatible donor among their relatives. We must look to research to improve the chances of successful treatment, both for those patients who have suitable relatives, and also for those like Anthony Nolan who do not and who must rely on a breakthrough being achieved in the field of unrelated donors.

1806 The hon. Gentleman will be aware that the Westminster Hospital, which treats Anthony Nolan, is one of the hospitals to the forefront of the development of bone marrow transplantation in this country. The hon. Gentleman has also spoken of the charitable support that this work has received. He will wish to know that my Department has received an application for a research grant from Dr. Hugh-Jones of the Westminster Children's Hospital—the proposed project being the evaluation of gnotobiotic isolation and bone marrow transplantation in children. As with most research project applications, this has been sent for the opinion of expert referees, whose advice is now awaited.

I think that I should not finish without paying tribute to those who give charitable support to the National Health Service generally, and to work on bone marrow transplantation specifically. It is sometimes suggested that the National Health Service should be so comprehensive in its provision that there is no need for support from charitable sources. Naturally we all look forward to the day when the NHS can meet all the demands made on it. That day is not yet with us, and even when and if it does arrive I hope that it will not be to the exclusion of the charitable efforts which have been a valuable source of support to the health services since long before the inception of the National Health Service.

I am genuinely sorry that I cannot offer an easy answer to the problems raised by the hon. Gentleman this afternoon. It is not because I choose not to do so, but because there is no easy answer. In conclusion, may I add that I hope that the Westminster Hospital's search for a suitable bone marrow donor for Anthony Nolan is eventually successful and that he may join the very few for whom this procedure has so far been successful using an unrelated donor.