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“It was just terrible. Eva was getting worse and there was nothing we could do to save her.”
In desperation she got out a message to the media to find help. A number of donors came forward. More than 500 people queued in Market Harborough, but no one was suitable. Amy said:
“It was agonising. We were doing everything we could, but as time went by we really thought nothing would be found to save her life.”
However, a few months later, Eva found a match. Was that match through bone marrow? It was not. The blood stem cells were from the umbilical cord of a baby born thousands of miles away in a small town in New Jersey, America. Now she is doing well and is optimistic about her future. We need to ensure that there is a life for those like Eva, for those like Billie, whose life, sadly, was taken away—and for those like Caitlin Behan, whom I met only last month.
At the age of seven, Caitlin also suffered from a particularly rare blood-related disorder. Again, she could not find a bone marrow match. By chance, her doctor attended a conference with a consultant from Spain, who happened to mention the option of cord blood. Only through that chance conversation did the information get back to Bernadette Behan that there was an option of finding cord blood as a match for her daughter. The search continued and they went to Barcelona, where the cord blood that was given to Caitlin was found. Now, at the age of 11, she is making progress.
We need to support the work of the Anthony Nolan Trust and other organisations that do such a fine job. Their aim, which should be commended, is to collect 50,000 cord blood units and to locate 10 collection centres in ethnically diverse areas throughout the country. That is a fine aim and those organisations work well with King’s College to ensure that samples are available for transplantation and research. We should also support the national cord blood programme, which is based in Nottingham. However, we need to go further by providing information to pregnant mothers. The Bill would do
that and require the Secretary of State to issue guidance to medical practitioners so that people are informed about the value and benefits of cord blood.
We should also recognise the research value of umbilical cord blood. It is not only an alternative to bone marrow, but has great potential for the future. We need to ensure the availability of cord blood samples for research. We support the fine work of Newcastle university and Colin McGuckin on ensuring that we do not necessarily have to rely on embryonic research, but can pursue umbilical cord blood as a convenient, ethically sound alternative, which many people would support.
We did not get there first—New York got there before us. Last year, Assemblyman Joseph Lentol introduced the Umbilical Cord Blood Bill, which was passed. He said:
“I believe this bill may be one of the most important we pass for expectant families this year. Many young couples and growing families do not yet know how important it is to consider storing umbilical cord blood after the birth of a child even though storing umbilical cord blood could be a lifesaver”.
I echo those words and his comments at the end of his speech:
“I am very proud of this legislation. Families need solid, reliable information in order to determine what to do with their newborn’s stem cells. This bill will help ensure that happens”.
The Bill that we are considering would ensure that that happened here. In Question Time on 15 October, the Under-Secretary recognised the potential of cord blood. We need to go further to realise it. We must ensure that we provide sufficient information to parents and hold the Government to account for their actions.
I commend the Bill to hon. Members, but recognise that it has limited parliamentary time and therefore call on the Government to issue guidance or other non-legislative means to realise the measure’s aims.
2.13 pm
Mike Penning (Hemel Hempstead) (Con): I congratulate my friend and colleague the hon. Member for Enfield, Southgate (Mr. Burrowes) on introducing the Bill and I am sad that the time for examining it is so limited. I am not sure whether the Government were concerned about the previous measure, which they seemed to want to continue to discuss for no reason, or whether they are worried about the Bill that we are considering. Perhaps the Under-Secretary will tell us and the country—and those who are desperate for umbilical cord and stem cell treatment—why the Government do not appear to want the Bill to make progress.
We have already heard that we are the leading country in stem cell research, with world-class experts in the field, yet as we have also heard, other countries are leading the way in the collection of cord stem cells and cord blood.
As this country becomes more ethnically diverse, it is important that we as a country, as politicians and as clinicians, try everything possible to ensure that those who need treatment but who are barred from receiving it simply because their ethnic background means that it is difficult to find a match or because they are of mixed race, get the treatment that they deserve. We hear all the time—indeed, we have heard again today—that many
people who need bone marrow transplants, particularly those from the smaller ethnic groups or those of mixed race, face problems finding a match. That is a difficultly in my constituency, where there are fairly large Kashmiri and Bengali communities, simply because we do not have the opportunity to get matches in this country. A national cord stem cell programme would help enormously with that.
The House has shown its will. Early-day motion 969, on the Anthony Nolan Trust and the national cord blood programme, has cross-party support and has attracted 133 signatories. Hon. Members should remember that Government Members on the payroll vote are not allowed to sign early-day motions, which shows how huge the number of hon. Members who have shown their will for the Bill to go forward is. It is a crying shame that it appears that the Bill will not be given the time that it requires.
I congratulate my hon. Friend the Member for Enfield, Southgate on his perseverance and his personal knowledge of the issue. It is also a shame that the Government have not taken the opportunity to address the matter in the Human Fertilisation and Embryology Bill, which is currently going through the House, as they could have done, not with an ongoing review—there are so many reviews taking place all the time—but by saying in the Bill that we need to take cord blood research forward.
As you can imagine, Mr. Deputy Speaker, I could speak for some time but I am desperate, as I am sure the House is, to hear from the Minister why, it appears, the Government do not support the Bill.
2.17 pm
The Parliamentary Under-Secretary of State for Health (Ann Keen): First, let me say to the hon. Member for Enfield, Southgate (Mr. Burrowes) that of course we have sympathy for the sentiment of the Bill. Indeed, it would command our support were it not for the fact that we already carry out everything that it requires.
It is important to place on record the fact that although we export nearly 75 per cent. of our cord blood units, we import a large percentage through mutual access to international networks. The NHS cord blood bank is the fourth largest in the world. There is no call anywhere in the world for routine collection. We have a large bank and it will get bigger. There is access to more than 10 million cord blood and bone marrow samples through worldwide networks. It is essential that we support the research that hon. Members have raised involving their constituents—sadly, including constituents who are no longer with us—so that they can benefit from it. That is what we are all about.
The Bill as it stands does not recognise the extensive work that the NHS already carries out on cord blood banking or show any real insight into, or analysis of, future cord blood need and how it could be best delivered, and we therefore cannot support it. Before explaining our opposition in more detail, I, like the hon. Gentleman, would like to welcome the Anthony Nolan Trust’s initiative. Since its establishment in 1977, the trust has proved highly successful and is today arguably one of the leading centres of bone marrow expertise in the world. The trust’s register of more than 400,000 bone marrow donors plays a crucial part in helping to treat NHS patients suffering from life-threatening blood disorders.
I volunteered to become a donor in the ’80s, when I was working as a nurse in the NHS at Hammersmith hospital, which had launched an initiative to encourage people to donate towards the Anthony Nolan Trust. Its work is vital not only nationally but internationally, because it is part of a network that gives NHS patients access to more than 10 million registered bone marrow and cord blood donations worldwide. That is a fantastic achievement, and it is made possible by the hard work and dedication of those involved with the trust. It is a commitment for which I and many thousands of others are very grateful.
There is already a national cord blood banking programme. The Department of Health has funded targeted cord blood collection for the past 12 years. The NHS cord blood bank, managed by the NHS Blood and Transplant authority, was established in 1996 and has received more than £10 million in funding from the Department of Health. It is the fourth biggest such bank in the world, with an inventory of about 12,000 umbilical cord blood units. The Department will be investing a further £10 million to increase the number of units stored to 20,000 by 2013.
The vast majority of donors available on registers worldwide are of white Caucasian ethnic background, and most patients from that racial group have more than a 90 per cent. chance of finding a matched unrelated donor. However, that figure falls substantially for patients from ethnic minorities, who have only a 30 to 40 per cent. chance of finding a good match. The point raised by the hon. Member for Hemel Hempstead (Mike Penning) on that issue is taken seriously by all of us in the House because we all have constituents from different backgrounds and because we all have a responsibility to worldwide research in this area.
The aim of the bank is to redress that imbalance by focusing collection at hospitals with high ethnic diversity and high delivery rates. As a consequence, approximately 40 per cent. of donations in the NHS cord blood bank derive from ethnic minority mothers—in contrast to the 3 to 4 per cent. ethnic minority bone marrow donors presently in the British bone marrow registry—thus increasing the potential for matches among patients from diverse ethnic groups. Collections take place in a dedicated area outside the delivery suite, so that risk to the well-being of the mother and child is minimised.
Mike Penning: The Minister rightly mentioned the problems relating to ethnic minorities, but this is much more of a problem for people of mixed race. That area is smaller and much more crucial.
Ann Keen: The hon. Gentleman raises an important point. The Department of Health’s umbilical cord review is due to report in the late autumn, towards the end of the year. The consultants carrying out this extensive review are due to produce their report soon, as I have said. The work is important because it also includes comparisons with current practice in other interest countries, namely, Canada, China, France, Japan and the United States of America. Interest in the review has far exceeded expectations, and it—along with the accompanying debate and the very well-received expert workshop that took place at the end of May—has provided the Department with a far more detailed picture of the situation, nationally and internationally.
Mr. Burrowes: I invite the Minister, once the conclusions are reached at the end of the year, to make a presentation to the new all-party group, which will be very pleased to hear what she has to say. Perhaps she will let me know whether she will accept that invitation. Also, will the review properly encompass the issues of an alternative to bone marrow and of research value? An answer to a parliamentary question of 15 October stated:
“Cells of the connective tissue, blood, muscle and neurons have been generated from umbilical cord stem cells.”—[ Official Report, 15 October 2008; Vol. 480, c. 1364W.]
Will the review look into the great potential, particularly in the area of neurons, for this to be an alternative to embryonic research?
Ann Keen: The hon. Gentleman again raises an interesting point, and I feel really confident that the Minister who has responsibility for this matter will want to share the findings of the review. If he writes to me on those points, I will personally see that they are given priority in the Department so that they can be included. We will do our best to do that, because his interest in this matter is obviously heartfelt.
As I suggested, the collections take place in a dedicated area outside the delivery suite, so risk to the well-being of mother and child is minimised. All collections comply with the Human Tissue Authority and are in line with the Royal College of Obstetricians and Gynaecologists guidelines. Suitable samples, which contain at least 40 ml of blood, are processed for banking and later transplantation. Those not meeting the criteria are, of course—where consent is in place—made available for this important research. All the units are available to NHS patients across the country.
The cord blood banking remit also encompasses the collection of directed donations to treat members of high-risk families. Collections are made by midwives at four NHSBT centres at Oxford, Bristol, Birmingham and Leeds. The service is supported 24 hours a day and includes training, telephone advice and liaison with the obstetric delivery unit to arrange collection. The training is, of course, essential. When people are on the telephone, it is critical to pass this information on to them in an informed way. That is why the continuing professional development of all concerned is an important issue; it must be taken with the seriousness that it deserves.
The proposals from the Anthony Nolan Trust for its national cord blood programme are a timely and interesting addition to the debate. However, Department of Health Ministers and officials in their many conversations with the trust have made it clear that support for any proposal of this nature—from the trust or any other organisation—can be given only if it supports and complements the current collection programme of the NHS Cord Blood Bank. The bank has vast experience and highly developed skills in the collection and banking of cord blood that cannot be matched anywhere else in the UK. I hope that all hon. Members will always highlight that fact whenever they speak about this subject. It is worth repeating that the bank has vast experience and highly developed skills in the collection and banking of cord blood that cannot be matched anywhere else in the UK.
The ANT has also had many years of experience of working with the NHS to identify potential bone marrow donors and provide sample matching services. The synergy between these two skill sets is self-evident. That is why
any support for the ANT proposals must be on condition that the two organisations work together to maximise the benefits of their work and, more importantly, to minimise duplication.
The Department of Health will shortly report on the findings of its review of cord blood collection and use. What has been very clear throughout the review is that there is no real call from the scientific and medical fields routinely to collect cord blood. If current collection and use is to be expanded in order to meet optimal unit numbers earlier or to provide more research material, that is best developed through existing specialist services in the area and in collaboration with NHS trusts and maternity services. Legislation requiring routine collection in all births would lead to a drain on NHS resources that could not be justified by clinical need. I am sure that the hon. Member for Enfield, Southgate supports that.
Umbilical cord blood is a wonderful source of blood stem cells, which are useful for the treatment of blood disorders, including leukaemia and lymphoma. Two years ago, I had the opportunity to accompany other Members and visit Harvard university and its stem cell research centre. The hon. Member for Enfield, Southgate and other hon. Members should do their best to visit it, too. The centre is managed by its chief executive, Brock Reeve, the brother of Christopher Reeve of Superman tendencies. I feel that the openness that it is willing to—
It being half-past Two o’clock, the debate stood adjourned.
Debate to be resumed on Friday 24 October.
Remaining Private Members’ Bills
UNION FLAG BILL
Order for Second Reading read.
To be read a Second time on Friday 24 October.
EXPENSES OF PUBLIC SERVANTS (PUBLICATION) BILL
Order for Second Reading read.
To be read a Second time on Tuesday 21 October.
LAND USE (GARDEN PROTECTION) BILL
Order for Second Reading read.
To be read a Second time on Friday 24 October.
IRAQ WAR INQUIRY (No. 2) BILL
Order for Second Reading read.
To be read a Second time on Tuesday 21 October.
SOVEREIGNTY OF PARLIAMENT (EUROPEAN COMMUNITIES) BILL
Order for Second Reading read.
To be read a Second time on Friday 24 October.
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