Umbilical Cord Blood (Donation) Bill
In January 2008, David introduced a Private Member's Bill to promote the donation of cord blood from women after giving birth. The Bill received its second reading on 15th October.
Umbilical Cord Blood (Donation) Bill
(Click on image to download)
David is Chair of the All-Party Parliamentary Group on Umbilical Cord Blood and Adult Stem Cells.
He also tabled an Early Day Motion on the subject which was supported by 135 MPs.
On this page...
| Article - 31st January 2011 Let's invest in umbilical cord blood and save lives
| Parliamentary Debate - 31st January 2011
| Article - 5th March 2009 New hope for umbilical cord blood
| Speech - 8th January 2008 David presents the Bill
| Press Release 15th October 2008
| Speech - 17th October 2008 Second reading
| Early Day Motion No. 969 (2007-08 session)
| Written Questions
ARTICLE: Let's invest in umbilical cord blood and save lives - 31st January 2011
Blood cancers are killers. According to Cancer Research UK, each year Britain diagnoses 4,000 new Myeloma cases and 2,500 Myeloma sufferers die. There are 11,000 Lymphoma diagnoses each year and 4,000 deaths. There are 7,000 Leukaemia diagnoses each year and 4,000 deaths.
For many people, their only hope is a blood stem cell transplant. These transplants really are a last chance for people who have no other treatment available. At any given time, around sixteen hundred people in Britain are waiting for a matched donor for a transplant – hoping to survive long enough to get that chance.
In 1988, for the first time, a stem cell transplant took place using cells retrieved from a donated umbilical cord and since then, scientists have been discovering all sorts of advantages to the use of cord blood. The extent of these effects is such that a cord blood bank would only have to maintain 50,000 units to provide for the bulk of Britain’s unmet need for stem cells beyond the 770,000 registered adult donors.
A further advantage is the readiness of the stem cells retrieved from umbilical cords. They are collected, tissue typed and frozen after the birth of the child and then are made available as soon as a patient requires them. This radically reduces the waiting time before a patient can access a transplant. Currently the average time it takes for a patient to receive their transplant is 160 days. Over those 160 days, many patients become progressively weaker, as do the chances of a successful transplant.
With such obvious advantages, it is no surprise that globally the proportion of transplants undertaken using cord blood is increasing every year. Yet where Britain once led, we are now falling behind the US, France, Germany and Spain. All of those countries now outstrip our cord blood collection, inhibiting our research capacity in this field.
There are 700,000 births each year in the UK and in almost every single instance, the umbilical cord is discarded as medical waste. The Government is nudging people to voluntarily agree to donate their organs upon death. Why not a nudge to encourage mothers to consider donating the umbilical cord?
For an investment of 50 million pounds, spread over five years, Britain can have that 50,000 unit cord blood bank. A 50,000 unit blood bank would provide economies of scale that would reduce the cost to the NHS for every treatment as well as radically reducing the need to import stem cell units from abroad, which is a common and expensive practice today. We often talk about investing to save but in this case it would save not just £6 million but 200 lives a year.
In a Parliament that will be characterised by the difficult decisions it makes, this is one decision I believe we can’t afford not to take.
SPEECH: Parliamentary Debate - 31st January 2011
Mr David Burrowes (Enfield, Southgate) (Con): I am pleased to have secured this vital debate. At first sight, a debate about umbilical cord blood might seem highly specialised and marginal in terms of its interest and application, but I hope that the debate that I have initiated will highlight the importance of the issue, and its wide application to the saving of lives and money. We have just completed the Second Reading of the Health and Social Care Bill, and this debate chimes with the Government's policy of creating a modern health service that is open to innovation and excellence, providing life-saving treatments.
I described this as a vital debate. "Vital" is a word used commonly in the Chamber. In fact, a quick search of Hansard will reveal that it was used 2,997 times in 2010-that is, an average of about 20 times each sitting day. It has been used in connection with banking reform, the G20, libraries and ladybirds. While all those are no doubt crucially important subjects and worthy of parliamentary attention, my use of the word "vital" in this debate relates to the number of people who, sadly, die each year from blood disorders and cancers without the vital resource of umbilical cord blood.
I introduced the issue of umbilical cord blood to the House on 8 January 2008 through a private Member's Bill on the subject. A number of hon. Members approached me afterwards, in a state of ignorance to which they openly confessed, to ask what it was all about. Since then the issue has been raised on a number of occasions-notably the debates on the Bill that became the Human Fertilisation and Embryology 2008-and great progress has been made in raising parliamentary awareness of the benefits that these life-saving cords can provide for people suffering from tragic illnesses. In 2008 an all-party parliamentary group was established, and I see that its chair, the hon. Member for Alyn and Deeside (Mark Tami), is present. I am sure that the House will wish to join me in paying tribute to the work of organisations such as the Anthony Nolan Trust, whose efforts have helped to keep the importance of cord blood at the forefront of the minds of many hon. Members, including Ministers.
I hope that tonight's debate will remind Members of the value of this vital resource. Blood cancers are killers. According to Cancer Research UK, 4,000 new myeloma cases are diagnosed each year in Britain, and 2,500 myeloma sufferers die. There are 11,000 lymphoma diagnoses each year and 4,000 deaths; there are 7,000 leukaemia diagnoses each year and 4,000 deaths. For many sufferers, the only hope is a blood stem cell transplant. It may result from a bone marrow match, or from the taking of blood cells from the bloodstream of an adult donor or an umbilical cord donated by a mother after childbirth.
The procedure is complex, and there can be a range of complications that pose a threat to the patient. However, although it may seem awful that only 50% of blood transplant patients survive the treatment, almost none would survive without it. Blood stem cell transplants really are the last chance for people to whom no other treatment is available. For some of those people, a transplant is not just a treatment that saves their lives for a while, but an outright cure. At any given time, about 1,600 people in Britain are waiting for a matched donor for a transplant, hoping to survive long enough to get that chance.
Five-year-old Sorrel Mason was one such person. Three years ago Sorrel's father noticed that she was looking pale, and she was eventually diagnosed with a rare strain of acute myeloid leukaemia. Her mother Samantha recalled the terrible fear and sense of helplessness that they felt at the time. She said:
After two doses of chemotherapy Sorrel was able to have a transplant, and received suitable stem cells from a mother's umbilical cord from Tokyo-albeit an expensive imported cord; that is a point to which I shall return later. Thankfully, the procedure was a great success. In Samantha's own words:
We are on relatively new ground here, because the first time a stem cell transplant took place using cells retrieved from a donated umbilical cord was in 1988. Since then, scientists have been discovering many advantages to the use of cord blood. You, Mr Speaker, will be relieved to know that I will refrain from reciting numerous tracts from the many academic papers on this subject. However, one especially noteworthy example of the great research work being carried out is the Cancer Research UK-funded trial being led by Dr Rachel Hough into the use of umbilical cord blood from unrelated donors for people who have cancer of the bone marrow or lymphatic system. Her team aims to investigate whether a transplant using cord blood cells can help cancer patients who cannot be matched to a bone marrow donor. This is an exciting and promising development that highlights the great potential for uncovering further benefits of cord blood.
The immediate benefit of a transplant from cord blood is that it achieves the same level of success for the patient at a significantly lesser degree of tissue matching. When I first raised this subject three years ago, we relied on speculation about the number of cord blood units needed for this country's health needs. Now we know from evidence and with authority that a cord blood bank would have to maintain only 50,000 units to provide for the bulk of Britain's unmet need for stem cells beyond the 770,000 registered adult donors. A great advantage of umbilical cords is the availability of the stem cells retrieved. They are collected, tissue-typed and frozen after the birth of the child, and then made available as soon as a patient requires them. That radically reduces the waiting time before a patient can access a transplant. Currently, the average time it takes for a patient to receive their transplant after the search for a match is started is some 160 days, during which time many patients become progressively weaker and the likely success of the transplant can thus be reduced.
Cord blood transplants save lives that other methods cannot, so it is no surprise that, globally, the proportion of transplants undertaken using cord blood is increasing every year. Great Ormond Street hospital, a leading transplant centre, will now use only cord blood where it is available. The pace of advance in this arena is excellent. Each year, the prognosis for patients treated is better than for those treated the year before, and that is because of the research taking place in the UK and around the world. Not only are blood cancers and similar disorders subject to increasingly effective treatments, but an active investigation is taking place into the use of cord blood in the treatment of sickle cell anaemia and HIV.
Ms Diane Abbott (Hackney North and Stoke Newington) (Lab): The hon. Gentleman will be aware that minority ethnic patients make up almost 20% of the unmet need for stem cell transplants, which is disproportionate to our 10% representation in the population. Does he agree that one of the important uses of this blood is in enabling ethnic minority patients, who find it more difficult to get a match, to have some hope?
Mr Burrowes: I am very grateful for that intervention. The hon. Lady and I share an interest in both sickle cell anaemia and the thalassaemia issue. The UK Thalassaemia Society, whose headquarters are in my constituency, has great interest in this area and, in particular, in the black and minority ethnic communities, who are not able to get matches through the bone marrow register and are acutely in need. That is particularly the case for mixed-race families, who struggle to find any match and are sometimes wholly reliant on a cord blood solution. That is why it is welcome that over the years the previous Government and this Government have increased the number of collection centres to make more of those units available.
However, more needs to be done because, sadly, where Britain once led, it is now falling behind the United States, France, Germany and Spain. All those countries now outstrip our cord blood collection, inhibiting our research capacity. There are 700,000 births each year in the UK and in almost every single instance the cord blood is discarded as medical waste. I am not proposing routine collection, but we must question the health and economic value of throwing all these potentially life-saving cords away. I welcome the fact that the Government are nudging people to agree voluntarily to donate their organs upon death, and I would encourage a similar nudge in encouraging mothers to consider donating umbilical cord.
Progress has been made, but more needs to be done. There are 1,600 people waiting for a stem cell transplant, but the unmet need in annual terms is only 440 transplants per year. A bank of just 50,000 umbilical cords would provide the bulk of that need. Sadly, simply increasing the size of the adult register is not an alternative to having cord blood. We already have access to more than 16 million donors on registers worldwide. The work of the Anthony Nolan Trust and others helps us to access that adult register, but we would need a UK adult register of a similar size to approach the effectiveness of a 50,000-unit cord blood bank.
Mark Tami (Alyn and Deeside) (Lab): I thank the hon. Gentleman for his earlier comments. It is difficult to talk in financial terms about such issues, but with patients who do not get a transplant, there is a huge ongoing medical cost for their treatment, whereas a transplant could save that money, which could then be reinvested in the health service.
Mr Burrowes: We often talk about investing to save, but this is an area in which investment would save both money and lives. I shall go into that in more detail.
A report on transplantation by the UK Stem Cell Strategic Forum, ably chaired by Professor Charles Craddock, was published in December 2010 by NHS Blood and Transplant. The Minister discussed the report, which makes important recommendations, with the all-party group on the day of its publication. The report recommended, first, investing in expanding Britain's cord blood bank capacity to 50,000 units. Those proposals have been properly costed and the costs have been balanced against effectiveness by NHS Blood and Transplant. For an investment of £50 million, spread over five years, Britain could have that 50,000-unit cord blood bank.
Nadine Dorries (Mid Bedfordshire) (Con): I thank my hon. Friend for giving way. I want to congratulate him on the work that he has consistently put into this issue over the past three years, which is to be commended. Would he endorse the proposal that certain hospitals or regions could be piloted or allocated as regions to collect and donate the necessary 50,000 units? Rather than having routine testing across the country, it could be just in specific regions or units.
Mr Burrowes: I am grateful to my hon. Friend for making that point. There has been some progress on the areas that could retrieve unit cords, particularly from members of BME communities who lack those matches, but we also need to look further at matching that up with regional centres of excellence. I shall return to that point.
First, let me deal with the money issue, which we cannot ignore in this area of health. For an investment of £50 million over five years, we could get that 50,000-unit blood bank. Although it would be difficult to find £10 million a year for five years in these austere times, the financial benefits make sense. The blood bank would provide economies of scale that would reduce the cost to the NHS of every treatment and would radically reduce the need to import expensive stem cell units from abroad, which is, sadly, too common a practice today. The saving that would bring to the NHS has been calculated at £6 million a year in perpetuity. Within 10 years, the entire investment would have been repaid and the programme would save the NHS money for the foreseeable future-and then there are the 200 lives we can choose to save each year by taking that step. So, it would save £6 million and 200 lives a year, and those figures are with currently available treatments at success rates that are currently being achieved.
Thomas Docherty (Dunfermline and West Fife) (Lab): I am very grateful to the hon. Gentleman for giving way. He has mentioned money several times. Is he aware of the work of the round tables around Britain and Ireland, of which I am a member? They have consistently raised large sums for the Anthony Nolan Trust. Will he place on record his thanks to the round table movement for its support for the trust and this matter?
Mr Burrowes: I am grateful to that movement and other groups and charities that support this important work.
We need to ensure that we do well what we can do well by adopting the report's second recommendation to establish regional centres of excellence in cord blood transplants. That would reduce the number of UK centres from 30 to 12, leading to a £12 million saving over 10 years. The report makes the point that that would, crucially, ensure that we had specialised, life-saving therapies in safe, publicly accountable environments. That is fully in line with the Government's commissioning policy for specialised procedures and would provide great benefit.
The third, really exciting recommendation is about providing an opportunity to build on Britain's unique strategic advantages, encouraging world-class research and private and voluntary sector growth that will provide new jobs and save further lives. The proposal to create a national trial programme in stem cell transplantation would take advantage of world-class centres of scientific research and the easy and sustained access to patients that the NHS provides. The proposal offers the potential for inward investment, private sector job creation and third sector involvement, as is well demonstrated by the success of the Centre for Clinical Haematology at the Queen Elizabeth hospital in Birmingham. To quote Professor Craddock:
The Government, as we know, are encouraging growth. Where better than in the field of cord blood stem cell transplantation? The Minister has been kind enough to keep me informed of the progress that her Department is making in the development of a response to the proposals in the report. I hope the time is nearing when she will be able to make a statement on her plans in this area. I trust that in the complexities and scientific details of that report, her Department will be clear about the central message that 200 lives and £6 million can be saved each year.
In conclusion, I draw upon the story of Sorrel Mason. Prior to her life-saving procedure, her parents had never heard of the importance of cord blood donation and its benefits for stem cell transplant patients. No one could put it better than they did when they said:
In a Parliament that will be characterised by the difficult decisions that it makes, this is one decision that we cannot afford not to take, and yes, I will say it again: it is vital to do so.
ARTICLE: New hope for umbilical cord blood - 5th March 2009
Last year saw the passing of the Human Fertilization and Embryology Act with debate in and outside Parliament focussed upon the relative value of embryonic stem cell research and its extension into the ethical minefield of animal-human embryo research. However this year holds out the prospect of a renewed focus on stem cell research which is producing therapeutic results in the area of umbilical cord blood and adult stem cells. David Burrowes MP (Enfield Southgate) has launched an ‘Umbilical Cord Blood and Adult Stem Cells All Party Parliamentary Group’ to sustain the campaign to promote the use of umbilical cord blood and value of adult stem cell research.
Last year David introduced a Private Members Umbilical Cord blood (Donations) Bill which received cross party support as well as from the Anthony Nolan Trust, the UK Thalassaemia Society, the Leukaemia Society (UK), and many individuals who recognise the value now of cord blood treating 85 different diseases and the potential new treatments in the future. The Government is due to report this month to the All Party Parliamentary Group (APPG) with the conclusions of their National Cord Blood Review.
David Burrowes said “In this country umbilical cord blood is routinely thrown away after birth and its life saving value is wasted. Only 4 hospitals collect cord blood, less than 1,000 cord blood samples are stored at the NHS bank each year, and less than 200 cord blood transplants have taken place in the UK. Many sufferers of leukaemia or blood related disorders are forced to search overseas for an appropriate cord blood match. Now that the Government has pushed through the Human Fertilisation and Embryo Act in order to be a world leader in regenerative medicine, we are calling on the Government to support stem cell therapy which has a proven record when it comes to treatments. My Bill and the APPG support an ethical and convenient alternative to embryonic sources of stem cells. We are seeking a greater understanding of cord blood and opportunities for donation to help parents who are waiting desperately for treatment for their children with diseases such as leukaemia.”
SPEECH: Umbilical Cord Blood (Donation) Bill - Private Member's Bill - 8th January 2008
Mr. David Burrowes (Enfield, Southgate) (Con): I beg to move,
Given that I have six children, I should be declaring an interest in the subject of the Bill. My constituency is adjacent to Barnet general hospital, one of only four NHS hospitals that collect umbilical cord blood. That would seem to be a good reason for developing an interest, but we have not donated umbilical cord blood despite six opportunities to do so at a nearby hospital. Like most parents throughout the United Kingdom, we were not informed of the value of cord blood or the possibility of collection. Until recently I did not consider the umbilical cord, once clamped after birth, as anything more than a waste product. The first purpose of the Bill, and of my speech, is to encourage parents and the wider public to be more informed about the value and benefits of umbilical cord blood.
Hon. Members may be ignorant, as I was, of the nature of cord blood. The baby’s blood in the cord contains different types of cell, including stem cells. Cord blood has been used for the last 20 years for blood transplantation. It has treated patients with leukaemia, sickle-cell diseases, immune deficiencies and other diseases: there have been 85 treatments to date.
There are possible treatments in the pipeline beyond blood therapy. Trials for the use of cord blood in brain injury in children are under way and cord blood is being developed for many other therapies, including diabetes and liver therapy. Treatment for leukaemia highlights the particular value of cord blood transplants, which can be used as an alternative to bone marrow transplants. Such cord blood transplants are less complicated, with fewer delays, and more readily available, as they can be stored and frozen for many years. Significantly, it is easier to find a match from stem cells than from bone marrow.
Umbilical cord blood collection leads to increased access to transplantation, particularly for patients from ethnic minorities. The reality is that umbilical cord blood, which is thrown away routinely after birth, has a life-saving value. Becki Josiah contacted me after her daughter Billie died from leukaemia in April 2006. She was ill for two years and awaiting a bone marrow transplant. A major difficulty for the Josiah family was their daughter’s mixed-race background. As Mrs. Josiah said to me,
The Bill attempts to increase the chances of a cure for families such as the Josiah’s.
Mrs. Josiah has also highlighted the limitations on donation. She recently had another baby and wanted to donate her newborn baby’s cord blood to help cure a child with leukaemia, like her daughter. However, her family does not live near one of the four NHS hospitals with facilities to accept her donation. As she said, it was not possible for her blood to
Successful treatment is possible for one’s own blood, a sibling’s or that of an unrelated patient. We must find a way of enabling more patients to access this source of treatment, and my Bill takes some steps in that direction.
My interest in umbilical cord blood arose when as a member of the Joint Committee I scrutinised the draft Human Tissue and Embryos Bill. Our remit was focused on the Government’s approach, which is to ensure that the UK is at the forefront of scientific development in embryonic stem cell research. A majority of public money supports embryonic research compared with other stem cell sources. The House will no doubt have the opportunity soon, with the Human Fertilisation and Embryology Bill, to debate whether it is wise to move into the realms of interspecies research to deal with the limited number of embryonic stem cell lines.
As well as the political hurdles, there are ethical and biological hurdles in the way of the Government marching us up to the top of the hill of embryonic research. It is therefore timely to consider an alternative hill of stem cell research. The terrain is the same: wanting the UK to be at the forefront of bringing stem cell therapies and regenerative medicine to the clinic in order to relieve suffering and reduce health care costs. With the help of this Bill, the focus would be on core blood stem cell therapy, which already results in treatment of diseases. Research in the field holds out an exciting future; notably Professor Colin McGuckin has led a team in Newcastle to be the first in the world to characterise human embryonic stem cells from umbilical cord blood.
The question that the Bill raises is why only 150 cord blood transplants out of 8,000 worldwide have been carried out in the UK. Why are we routinely disregarding the proven life-saving value of umbilical cord blood but legislating and investing predominantly in the unproven and ethically challenging route of embryonic research? Given that we will in the foreseeable future depend on non-embryonic stem cell therapies, why are we putting literally most of our eggs in one basket?
There are supporters of the Bill who are not necessarily opposed to embryo research but recognise the value of umbilical cord blood and its availability. The Bill would make it a universal requirement for doctors to inform pregnant women of the benefits of collection and storage of cord blood. The Royal College of Obstetricians and Gynaecologists advises that if there is a known genetic condition in a family—already a child with leukaemia or a blood-related disorder—a clinician may recommend that parents bank their babies’ cord blood. My Bill would presume that collection takes place in such circumstances unless parents opt out or medical reasons prevent it. If nothing is done in this area, some private banks will simply exploit families’ fears.
The practical problem facing any future extension of donation of cord blood is the limited number of NHS maternity units equipped for collection and storage in a safe environment. The NHS cord blood bank at Edgware restricts its collections to Barnet general, Northwick Park, Luton and Dunstable and Watford hospitals, which are the only dedicated units in England. The collection sites do not form a planned approach to collection of cord blood and we are currently missing—or, more to the point, wasting—the opportunity presented by umbilical cord blood.
The Bill seeks to promote the collection of cord blood from specific shortage groups, particularly ethnic minority groups and mixed-race families. The UK Thalassaemia Society, which has its base in Southgate in my constituency, recognises that point in its support of my Bill, as does the Leukaemia Society in the United Kingdom. They have emphasised to me the difficulties for leukaemia patients of Cypriot origin in finding appropriate bone marrow matches and support the proposed extension of cord blood donation.
The purposes of the Bill are not wholly dependent on legislation. The Anthony Nolan Trust, which also supports the Bill’s aim to promote the benefits of cord blood collection, is setting up the first charitable cord blood bank in the UK and plans to promote opportunities for more cord donation. The hope is that six maternity units will facilitate collection. The aim is to harvest 12,500 cords within five years for clinical and research use.
The Bill seeks to raise our sights higher, given the value now of cord blood’s treating 85 different diseases. It also seeks to rebalance the debate on stem cell therapy, which can often be more led by media proxy and hype than the ability realistically to treat patients. The Bill supports an ethical and convenient alternative to embryonic sources of stem cells. It also supports parents who are waiting desperately for treatment for their children with diseases such as leukaemia.
I leave the last words to Becki Josiah. She says:
and asks whether anything can be done to help her.
I commend the Bill to the House.
Question put and agreed to.
Bill ordered to be brought in by Mr. David Burrowes, Geraldine Smith, Simon Hughes, Robert Key, Mr. Julian Brazier, Mr. Stephen Crabb, Mr. Andrew Dismore, Bob Spink, Michael Fabricant, Jim Dobbin, Andrew Selous and Mrs. Nadine Dorries.
Umbilical Cord Blood (Donation)
Mr. David Burrowes accordingly presented a Bill to promote the donation of cord blood from women after giving birth; and for connected purposes: And the same was read the First time; and ordered to be read a Second time on Friday 17 October, and to be printed [Bill 50].
PRESS RELEASE: MP seeks new law to promote 'life saving' umbilical cord blood - 15th October 2008
The issue of stem cell therapy and research will again be debated next week when Parliament considers the remaining stages of the Human Fertilisation and Embryo Bill on Wednesday 22nd October.
However this week David Burrowes MP (Enfield Southgate) will draw Parliament’s attention not to embryonic stem cells but to umbilical cord blood stem cells. His Private Members Bill – Umbilical Cord Blood (Donation) Bill- is due for Second Reading on Friday October 17th. He is also today launching an All Party Parliamentary Group to sustain the campaign to promote the use of umbilical cord blood.
The Umbilical Cord Blood (Donation) Bill seeks to promote the donation of umbilical cord blood by giving the Secretary of State a duty to:
encourage pregnant women to donate their umbilical cord blood after birth increase awareness of the value of umbilical cord blood for the treatment of diseases and for research of new treatment methods
promote the collection of cord blood samples from designated groups, including minority groups and mixed race families in which there is a history of diseases that are, or may be, treatable by use of cord blood.
The Bill requires the Secretary of State to issue guidance to doctors and midwives to inform pregnant women about umbilical cord blood and where it can be collected. The Health Secretary would also be required to inform Parliament each year of the number of cord samples donated the number of cord blood transplants and their therapeutic use.
The Bill has cross party support as well as support from the Anthony Nolan Trust, the UK Thalassaemia Society, the Leukaemia Society (UK), and many individuals who recognise the value now of cord blood treating 85 different diseases and the potential new treatments in the future.
David Burrowes said “In this country umbilical cord blood is routinely thrown away after birth and its life saving value is wasted. Only 4 hospitals collect cord blood, less than 1,000 cord blood samples are stored at the NHS bank each year, and less than 200 cord blood transplants have taken place in the UK. Many sufferers of leukaemia or blood related disorders are forced to search overseas for an appropriate cord blood match. At a time when the Government is pushing through the Human Fertilisation and Embryo Bill for the UK to be a world leader in regenerative medicine it is a timely opportunity to support stem cell therapy which has a proven record when it comes to treatments. The Bill supports an ethical and convenient alternative to embryonic sources of stem cells. It also supports a greater understanding of cord blood and opportunities for donation to help parents who are waiting desperately for treatment for their children with diseases such as leukaemia.”
SPEECH: Umbilical Cord Blood (Donation) Bill - Second reading - 17 October 2008
David Burrowes opens the debate on the second reading of his Private Members Bill to increase the supply of cord blood in the UK. The Bill aims to promote the donation of cord blood from women after giving birth as currently there are only four NHS hospitals with collection points.
Mr. David Burrowes (Enfield, Southgate) (Con): I beg to move, That the Bill be now read a Second time.
It is a great pleasure to open this debate. Hon. Members always say that their Bills or debates are timely, and I am no different. My Bill is particularly timely, not least because next week attention will focus on stem cell research and regenerative medicine because of the Human Fertilisation and Embryology Bill. At that stage, the focus will predominantly be on embryonic research, but my Bill gives us an opportunity to focus on the increasingly significant issue of umbilical cord blood.
There is a concern that Britain is lagging behind other countries. When we debate the remaining stages of the Human Fertilisation and Embryology Bill next week, we will no doubt hear the Minister saying that the aim is for the United Kingdom to be at the forefront of stem cell research. The concern is that this country is lagging behind when it comes to umbilical cord blood—in respect of availability, transplantation and, significantly, research.
Lembit Öpik (Montgomeryshire) (LD): The hon. Gentleman is right to say that we are lagging behind in those respects. Does he agree that that is a tragic irony, as in this field we have some of the best minds in the world? He will know that I am very involved with the Motor Neurone Disease Association. Does he agree that the innovations that he proposes make sense, because we can make a world-class contribution to curing motor neurone disease and other diseases if we have the courage to make the investment?
Mr. Burrowes: I am grateful to the hon. Gentleman, who is a passionate advocate for those who suffer from motor neurone disease; we all commend him on that.
We are world leaders, to an extent. The issue is timely because at Newcastle university Professor Colin McGuckin and his assistant Dr. Nico Forraz have been leading the way in making the point that umbilical cord blood is not only an alternative to bone marrow stem cells. Professor McGuckin has demonstrated the existence of pluripotent cells in cord blood and that cord blood-derived cells have the capacity to form differentiated tissue types. Like embryonic stem cells, they can be differentiated into other types such as liver, renal, pancreatic, vascular and corneal cells.
It is important that we recognise the potential in the neurone area as well. It is such a shame that Professor McGuckin and Dr. Forraz have resigned from the research unit at Newcastle. They are going to Lyons in France, where they will have the benefit of being able to carry out research into regenerative medicine. They want to set up a regenerative medicine institute dedicated to umbilical cord blood and adult stem cells. Their departure is a significant loss. We should recognise the need to be world leaders on this issue because it has such potential to save lives.
Mr. Andrew Dismore (Hendon) (Lab): As the hon. Gentleman knows, I am one of the sponsors of the Bill and support it. What he is doing is important. I recall that when I visited the blood service in my constituency a little while ago, people there particularly emphasised the importance of collecting umbilical cord blood from the minority communities, among whom collection is lower than among the population as a whole. Does he agree about the importance of that? I see that the Bill refers to the issue. Does he agree that we need to do much more to encourage mothers from minority communities to donate their cord blood, to help deal with the diseases that particularly affect, and are prevalent among, those communities?
Mr. Burrowes: I thank the hon. Gentleman for his intervention and for his support for the Bill. A significant service is provided by the cord blood bank at Edgware and, not far from his constituency, at the Royal Free hospital, with the work that the Anthony Nolan Trust does on cord blood at its headquarters there. A key aim of the Bill must be to ensure the promotion of the collection of cord blood for minority groups and mixed-race families, who are often at the bottom of the scale in terms of finding bone marrow matches. Cord blood offers great hope for people in the hon. Gentleman’s constituency and mine. Families in the Cypriot community often experience great difficulties when children who are suffering from leukaemia are unable, because of their particular blood type, to obtain a bone marrow match. They too recognise the importance of umbilical cord blood.
Mr. Philip Hollobone (Kettering) (Con): I appreciate my hon. Friend’s remarks. A constituent of mine, Mrs. Jeanette Crizzle, who has now very sadly passed away, was of mixed parentage and died of leukaemia because she could not find a suitable bone marrow match. That led to the creation of the Jeanette Crizzle Trust, which is designed to help the Government to promote the “Give and Let Live” donor programme in secondary schools. That has been taken up by 3 per cent. of schools. The cord blood bank that my hon. Friend would like to set up would give a lot of hope to people of mixed parentage who face these life-threatening diseases with, sadly, little hope of finding a suitable donor.
Mr. Burrowes: My hon. Friend is vigorous in the campaign on behalf of that organisation and has already raised the matter in the House this week. I commend him on that.
The collection of umbilical cord blood by NHS hospitals has arisen in an ad hoc way, not in a way that has taken account of particular ethnic groups that are lacking in this regard because they find it difficult to obtain matches. The service is available in four areas—Luton and Dunstable, Northwick Park, Watford and Barnet. The midlands, for example, has no NHS hospital collecting cord blood. It is important that we look at how that can be improved, and I know that the Minister will want to indicate that progress is being made. Organisations such as the Anthony Nolan Trust are keen for availability to spread further. I commend its national cord blood bank, which was opened on 11 September in Nottingham. It has the great aim of increasing the collection of cord blood, which currently stands at about 10,000 cord units, to 50,000 units in five years. It wants to ensure that there are collection points that properly reflect the importance of providing people, particularly those from mixed-race families, with the matches that they need.
When I was on my journey of discovery in becoming informed about cord blood, Becki Josiah came to see me, and that brought home to me the importance of this Bill and of the Government responding positively to it. Her daughter, Billie, sadly died of acute lymphoblastic leukaemia. She was ill for nearly two years and was due to have a bone marrow transplant but could not get back into remission. Mrs. Josiah tried high and low to find matches for Billie, but sadly, particularly because her daughter was of mixed-race background, it was not possible to find one. She contacted me to say:
“Is there anything you can do to help me highlight this frustrating state of affairs, or maybe there is something I can do to help you?”
How we respond to that is the challenge of the Bill and my question to the Minister.
The Bill is timely in the sense that the Government have an ongoing umbilical cord blood review. I hope that the Minister has sufficient time to provide an update on the conclusions of that review and on whether the aims of the Bill can properly be met by its recommendations.
Mr. Christopher Chope (Christchurch) (Con): What my hon. Friend is putting forward seems to be absolute common sense. Have the Government indicated to him in advance that they support the Bill?
Mr. Burrowes: Sadly, I have not had that indication. As I am sure the Minister will confirm, there is a general indication that there is support for the Bill. Indeed, a recent parliamentary answer said that there is support for umbilical cord research as well as other types of stem cell research, but the Bill wants to put those warm words into reality. We want the Minister today to say, ideally, that there is support for the Bill, despite it not having time to go through all its stages, and to give an assurance that, even through non-legislative means, we can achieve the purposes of the Bill.
The Bill is also timely because this week an all-party parliamentary group was launched on umbilical cord blood and adult stem cells. That has been supported by a number of hon. Members and those in the other place. What is significant about the members of that group and about those who attended the meeting is that they come from all sides of the argument, although they will no doubt draw their battle lines during the human fertilisation and embryology debate. They included many who would traditionally be seen as pro-life, those who would traditionally be termed pro-choice, those who support embryonic research and those who look to what they would consider more ethically sound stem cell research routes. All were there together supporting umbilical cord blood donation and the aims of the Bill. That support shows that we have an important opportunity not just to go down the route of embryonic research but to put cord blood centre stage—it seems to be sidelined at the moment—and to ensure that it has support, so that it is available at collection points and there is proper transplantation and research.
Why is there a need for the Bill? As I have said, just four NHS hospitals have collection points, but there is also a lack of information. I was fortunate to live near Barnet hospital. Throughout the births of our six children, never were we informed that there was the opportunity and option for us to allow the cord blood from our
children to be donated. That seems madness and a complete waste. It is a waste that over 90 per cent. of cords are simply thrown away and treated as a waste product when they could be a life-saving opportunity for many. To collect 1,000 or so cords a year is not enough. It is far behind other European countries such as Spain, which sees it as the norm and part of the process of giving blood to collect the cord. Fewer than 200 transplants out of a worldwide total of 8,000 is also not enough. About 65,000 litres of cord blood are thrown away. That is not acceptable. Of those cords that are collected, 50 per cent. effectively end up being thrown away. The Anthony Nolan Trust and others say that we could make so much more use of that. We could make some great research use of that.
The way that cord blood is traditionally used is to help in leukaemia and other blood-related disorders. Such disorders have traditionally led people to seek matches through bone marrow, but of the 24,000 cases of leukaemia in the UK, less than 50 per cent. of patients will find a bone marrow match. That has led to the individuals who have already been mentioned today and to others contacting me about their concern that more should be done. The mother of Eva Winston-Hart, Amy, said, when she sought to find a cure for a particularly vicious form of leukaemia:
“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.
LATER IN THE SAME DEBATE, DAVID'S INTERVENTION DURING THE MINISTER'S REPLY
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.
EARLY DAY MOTION No. 969 (2007-08 Session)
THE ANTHONY NOLAN TRUST AND THE NATIONAL CORD BLOOD PROGRAMME
"That this House salutes the pioneering work of the Anthony Nolan Trust in establishing and maintaining a national database of bone marrow donors for which they recruit and tissue-type more than 20,000 new entrants each year, giving around 6,000 children and adults a chance of new life since 1974; notes with interest that the Trust, with the support of the East Midlands Development Agency, has begun the establishment of a new Cord Blood Bank which could become a National Cord Blood Programme of a scale to provide a truly national resource for access to umbilical blood stem cells for future treatment and research; believes that this development offers great hope for the future treatment of a wide range of serious medical conditions; and invites the Secretary of State for Health to take a lead in welcoming the Trust's five year aim to collect 50,000 cord blood units with 30,000 able to be used for research purposes."
21 October 2008
Mr. Burrowes: To ask the Secretary of State for Health when the conclusions of the Umbilical Cord Blood Review will be published. 
Dawn Primarolo: As part of a review of cord blood collection and use, the Department commissioned an international comparison with cord blood collection in Canada, China, France, Japan, Spain and the United States of America. The report will be made available later this year and its findings will be taken into account when considering policy in this area.
22 July 2008
Mr. Burrowes: To ask the Secretary of State for Health how many representations he has received on extending the (a) collection and (b) use of umbilical cord blood in the UK for clinical and research purposes. 
Dawn Primarolo: I have met one organisation to hear a proposal on extending the collection and use of umbilical cord blood in the United Kingdom for clinical and research purposes. The same proposal has generated 13 pieces of correspondence. In total, two parliamentary questions have been laid on extending the current services.
Mr. Burrowes: To ask the Secretary of State for Health how many units of cord blood have been imported for use in the NHS since 2005; what proportion of these units were sourced and identified by the NHS; and if he will make a statement. 
Dawn Primarolo: 26 cord blood units have been imported for use in the national health service since 2005. All were sourced by the NHS.
24 June 2008
Mr. Burrowes: To ask the Secretary of State for Health how many NHS maternity units he estimates will apply for the new cord blood collection licence announced by the Human Tissue Authority on 30th April 2008. 
Dawn Primarolo: It is not possible to determine at this stage what proportion of those applying for a licence will be national health service maternity units. The Human Tissue Authority estimates that there are between 50 and 200 procurement organisations. Up to half of these are thought to be related to umbilical cord blood. Some are already licensed and others will be able to work under valid third party agreements which mean that they will not themselves require a licence.
17 June 2008
Mr. Burrowes: To ask the Secretary of State for Health what estimate he has made of the likely effect on the level of cord blood collection of the new licensing procedure announced by the Human Tissue Authority on 30 April. 
Dawn Primarolo: While it is not possible to predict with accuracy the effect on levels of cord blood collection, the Human Tissue Authority has had discussions with organisations affected by the new procedures with a view to creating a regulatory framework that is flexible and proportionate and meets the requirements of the Regulations. The Department is currently carrying out a cord blood policy review which is due to report to my right hon. Friend the Secretary of State in the autumn.
Mr. Burrowes: To ask the Secretary of State for Health whether new licensing procedures for cord blood collection will require the presence of a qualified phlebotomist at the collection of the blood as a condition of the issue of a licence. 
Dawn Primarolo: No. The Human Tissue Authority’s standards require that staff involved in procurement are trained and competent at the tasks they perform, and have procedures in place to protect the safety of donors.
8 May 2008
Mr. Burrowes: To ask the Secretary of State for Health what the terms of reference are of the umbilical cord blood review being undertaken by his Department; and which organisations and individuals have accepted invitations to the review meeting on 28 May 2008. 
Dawn Primarolo: The proposed review will assess the following:
The review, to be carried out by Technopolis Ltd, will prepare an initial report on the current use of stem cells collected at birth. This will be presented to an expert workshop on 28 May 2008.
Those invited to the workshop include representatives from Government Departments, regulatory agencies, research councils, public and private blood banks and the Royal Colleges. Two international cord blood research experts, Professor Colin McGuckin from Newcastle university and Albert Bekassy from Lund university Sweden, have also agreed to attend.
Replies are still being received but, so far, 19 representatives from the organisations have agreed to attend.