Bone Marrow Register

– in Westminster Hall at 1:00 pm on 15th December 2009.

Alert me about debates like this

Photo of Chris Ruane Chris Ruane Labour, Vale of Clwyd 1:00 pm, 15th December 2009

In the past two years, two people I personally know have been struck down with leukaemia, as was another person I admired from afar-the late campaigning journalist, Adrian Sudbury, who worked with the Anthony Nolan Trust to do more than anyone else to raise awareness of bone marrow issues.

Of the two people I know personally, one is a young lad called Max Tami, who is only 11 years old-he was nine years old when he was struck down with leukaemia. He is the son of my hon. Friend Mark Tami, who is a friend and colleague. The other person is a constituent and friend of mine, Mike Peters, who used to be the lead singer with the 1980s Welsh band The Alarm. Since the band split up, Mike has pursued a very successful solo career. Both those individuals have tried to raise awareness of leukaemia and of the importance of donating stem cells and bone marrow to help cancer sufferers. Max recently had a starring role on "Children in Need", where he nearly outshone Terry Wogan, asking people to come forward to be donors.

Two years ago, Mike Peters was stricken with cancer for the second time in his life. Mike is a whirlwind of energy and has promoted awareness of the importance of donating. He has done that with his band at the top of the Empire State building, as well as from the foothills of Everest and the foothills of Kilimanjaro. He co-founded his own charity, the Love Hope Strength Foundation, with fellow cancer sufferer, American citizen James Chippendale. The two have hosted more than 80 donor drives at music events across the US. Their foundation was sponsored by DKMS and Visa and has become the first resident charity at the famed Red Rocks amphitheatre in Colorado. Donors at those events offer a saliva DNA swab, which allows the health authorities to identify life-saving matches. James Chippendale's own life was saved by that method.

In one year, the Love Hope Strength Foundation has brought awareness of the need for donors to more than 1 million people, and registered 4,500 bone marrow donors. To put that in perspective, the total number of donors registered in Northern Ireland is 9,000, so in one year the two individuals behind the foundation registered the equivalent of almost half that country's donors-a fantastic result.

That success was possible because the American and German systems allow the identification of donors from DNA mouth swabs. In the UK, NHS bone marrow identification is done through the blood donor pool. A DNA swab is far less invasive than extracting a hypodermic needle full of blood from a donor's arm. Mike Peters is prepared to do similar work in the UK if he is allowed to. He is prepared to use the contacts he has made over 32 years in the music business to raise this important issue.

Mike rang me excitedly at the weekend to say that he had just learned that the Anthony Nolan Trust was doing a pilot project on DNA mouth swabs. I had to tell him that I already knew because I was at the trust's event in the House of Commons last week. I was presented with one of the mouth swab packs and I want to present the Minister with one after the debate, because they are a big step forward in increasing the number of people on the bone marrow register.

I want to raise a number of issues with the Minister, which I shall do by reviewing the parliamentary questions that I have placed before her over the past two or three weeks. Each of those questions raises additional questions, so I want to give a flavour of the remaining unanswered questions.

In answer to one of my questions, the Minister stated that

"the British Bone Marrow Register strategy for maintaining the registry at 300,000 donors is readily attainable without any change to current donor selection guidelines."-[Hansard, 1 December 2009; Vol. 501, c. 650W.]

Why is the NHS bone marrow register kept at 300,000 if two patients a day are unsuccessful in finding a suitable bone marrow match?

In answer to parliamentary question 304105, in which I asked what proportion of UK patients received their stem cell or bone marrow donation from UK or foreign donors, I was told that the information was not collected. How do we know whether we have sufficient UK stem cell and bone marrow donors if the Department does not collect figures on the provenance of the donor tissue? The country of origin of stem cell and bone marrow donations is also not collected. Are some countries being relied on more heavily than others to provide donor material? Is Britain a net exporter or a net importer of such material?

When the Department collects figures, disparities appear. I tabled parliamentary question 300913 to ask for a breakdown of the numbers and percentages of bone marrow donors for the regions of England and for Wales, Scotland and Northern Ireland. The English regions-the northern region includes my area of north Wales-seem to recruit 30 per cent. of the existing pool of blood donors on the bone marrow register. In Northern Ireland, the figure is only 3 per cent., and in Scotland, it is only 4.5 per cent. The figures for Wales are not held. The answers to my parliamentary questions confirm that no meeting has taken place between the Secretary of State and the devolved Administrations to discuss correcting that imbalance. Why is there a disparity between the number of donors in Northern Ireland and Scotland and in the English and north Wales regions? Why are the Welsh figures not collected? I know that the hon. Lady is an English Minister, but there is interdependence between the UK's four constituent parts. Why has no meeting taken place between all the health administrations to address the issue?

I tabled parliamentary questions 304184 and 304100 on the collection of umbilical cord blood. I asked for the total amounts of umbilical cord blood that were processed and stored in the NHS cord bank in each of the past 10 years and for the number of units that were actually used to save patients' lives. In 1997, there were 862 units; in 2009, there are 1,712. In 1999, three units were used in operations to save people's lives; in 2009, 43 units were used. Why has the annual number of donors only doubled in 10 years? The Anthony Nolan Trust says that 50,000 umbilical cord units are needed? Why have we not reached that target after 12 years?

In parliamentary question 304106, I asked for the number of cord blood units that the NHS cord bank has issued for transplant into patients since 1998. The number rose from a low of three per annum in 1998 to 44 in 2007, and the figure has now stabilised at around that level-I think it was 47 and 43 in the past two years. Why are the numbers so low when the need is so high? What is happening to the unused cord blood from newborn babies? Is it simply being thrown away while lives are lost for want of a proper match?

In parliamentary questions 304099 and 304103, I asked for the budgets for the marketing activities intended to attract blood donors, because bone marrow donors are taken from the blood donor pool. I am pleased that the amount has gone up from £10.5 million to £14.5 million over the past eight years-an increase of nearly 50 per cent. However, the number of donors has decreased from 1.8 million, or 3.7 per cent. of the population, to 1.4 million, or 2.7 per cent. of the population, over the past eight years. Will the Minister check the effectiveness of the campaigns? Will she consider separating the advertising campaigns for blood and bone marrow? Will she also consider greater joint working with charities, with volunteer bodies such as the Anthony Nolan Trust and Adrian Sudbury's Register and Be a Lifesaver project and with civic-minded individuals such as Mike Peters. There is a pool of talent that is not being fully utilised.

Last week I attended a parliamentary function held in the Terrace marquee by the Anthony Nolan Trust, to highlight its work. I thank the trust for its pioneering work in the past 35 years. It is the largest and probably best regarded bone marrow register in the world, and it was the first in the world. It is successful because it focuses on one issue and one goal. It has limited itself to the goal of providing bone marrow donors for transplants in the UK and abroad. The trust informed me that two UK patients every day are denied the chance of a life-saving transplant because of the lack of suitable adult matches or cord bank blood.

The Anthony Nolan Trust has not rested on its laurels. It currently has more than 400,000 people on its register-compared with 300,000 on the national health service register. The trust has taken 35 years to reach that figure and its vision is to recruit 1 million registered donors by 2014. To achieve that, it will need the help of the Minister and the Department.

The register is not just about numbers. It is also vital to have a greater number of young male donors and black and ethnic minority people, to increase the life chances of such people should they be threatened by leukaemia. One of the key issues that Mike Peters has raised, which I have raised in questions, is the need for saliva tests to identify donors. That need is being addressed by the Anthony Nolan Trust, which has piloted saliva testing. I hope that the Minister will convince her Department that what is good enough for the Anthony Nolan Trust register is good enough for the national health service. I hope that my friend Mike Peters will become involved in that charity's bone marrow register events across the UK.

The Anthony Nolan Trust already works closely with the Department and with the devolved Health Departments in the United Kingdom. In Scotland it works with the Scottish National Blood Transfusion Service to encourage blood donors to join the Anthony Nolan register. As I mentioned, the registration rate in Scotland is only 4.5 per cent., as opposed to 33 per cent. in England, so there is much work to be done. The trust is also trying to persuade the Scottish service to allow direct recruitment of people on to the bone marrow register without their previously going on the blood register. The Anthony Nolan Trust seeks even closer co-operation with the English NHS. It has the aspiration of a single, highly effective register, managed by the trust. I urge the Minister to consider the proposal carefully.

To supplement the adult register, the Anthony Nolan Trust has established a purpose-built cord blood bank, which was opened by the previous Secretary of State in September 2008. In the past four years, the trust has imported 268 cord blood units for UK patients-more than have been provided by the NHS cord blood bank in 13 years. That gives a measure of its effectiveness. Last year alone it imported 90 cords for UK patients. That is costly, and would be unnecessary if an effective UK programme existed. The UK is currently underperforming in the harvesting of cord blood, as my parliamentary questions illustrated. The current world leaders are Spain and Canada. The UK collects only a tiny amount-I think it is something like 0.13 per cent. The rest of that elixir is simply thrown away, although most mothers, if asked, would willingly let that blood-their baby's blood-be used to save life. The Anthony Nolan Trust has a plan to collect 15,000 clinical samples by 2012 from a network of 10 collection centres across the UK. That will cost £15.2 million, and I believe that the Department approached the trust and asked it formally to apply for the funding. The submission was made in June 2009, but since that date there has been little progress. I do not think that the trust has heard from the Department. That excellent project makes sense in many ways: it meets the desires of mothers make positive use of the umbilical cord; it gives a community focus; it saves the lives of thousands of patients; and it will create a world-leading resource in the UK and build a resource for the future. In addition to its life-giving properties for leukaemia sufferers, a cord bank could offer help to those suffering from diabetes, Parkinson's disease, heart disease and many other conditions.

As well as its work on increasing the number of bone marrow and cord blood donors, the Anthony Nolan Trust does excellent work to educate young people about how easy it is to donate bone marrow, blood and organs. It has fully supported the Adrian Sudbury Campaign to raise awareness among 17 and 18-year-olds. The awareness raising campaign, which was supported by the Department of Health, was a huge success and will be extended to cover England and Wales.

At a cancer campaigning day two weeks ago held at Church House, my friend and constituent Mike Peters asked whether the Secretary of State would meet him and me to discuss bone marrow issues. The Secretary of State agreed. Will the Minister please set up a meeting with the Secretary of State, herself, Mike Peters and the Anthony Nolan Trust to take forward the issues I have raised in debate: increasing the size of the adult bone marrow register and the possibility of the merger of the English or UK registers; taking forward the Anthony Nolan Trust proposal to establish a £15.2 million centre in the UK for a cord blood donation programme; and greater use of education and awareness schemes like those operated by the Adrian Sudbury initiative and the programmes that Mike Peters has implemented with young people at American rock festivals?

We have a golden opportunity to make the UK the world centre for bone marrow and stem cell registers. We have the disparate parts; there are fantastic voluntary organisations and individuals, sometimes working in ignorance of each other. I look to the Minister to establish funding and co-ordination to achieve those noble goals.

Photo of Gillian Merron Gillian Merron Minister of State (Public Health), Department of Health 1:17 pm, 15th December 2009

I congratulate my hon. Friend Chris Ruane on securing this important debate, and on his campaigning on a crucial issue. I have listened closely and I am happy to respond to points that he raised, but I would like first to give some helpful context. I shall of course write to my hon. Friend on any matters that I do not get a chance to discuss. As always, I should be happy to arrange a meeting with him.

The context is the debate about stem cells, of which bone marrow is one source. Donation of bone marrow and other stem cell sources in the UK is managed by NHS Blood and Transplant. The NHS works closely with important partners such as the Anthony Nolan Trust. There are three bone marrow registries in the UK, which are monitored by clinical experts at NHSBT. Combined, they are the third largest registry in the world, and consist of the British Bone Marrow Registry, which is operated by the National Blood Service and includes services for Scotland and Northern Ireland; the Welsh Bone Marrow Donor Registry; and the Anthony Nolan Trust bone marrow registry, which holds the records of 400,000 donors.

Blood donation is of course an integral part of the work to identify bone marrow donors. The UK has an international reputation for work in that area. It is worth saying, in response to some of the points that my hon. Friend raised, that the registers form part of a network, via the organisation Bone Marrow Donors Worldwide. It provides search access to more than 13 million donors and cord blood units worldwide. The registers in the UK do not stand alone, but are part of a wider picture. The Government have a very proud record of working closely with charities, volunteer bodies and individuals, including on targeted campaigning and collection programmes. In October, we helped to fund an international event on the benefits of cord blood for transplant patients. On the same day the event took place, I opened the NHS cord blood bank's newest collection site at St. George's hospital, in Tooting. For me, the opening was testimony to the value of the Government's investment in research into life-threatening conditions.

As with all NHSBT's cord blood collection sites, St. George's was chosen because it serves families of a diverse multicultural mix. I was struck by how such a simple procedure could provide such a valuable resource. As my hon. Friend acknowledged, it adds an essential contribution to the work of supplying the NHS with stem cells for transplant. It saves lives, and it makes an important difference to families affected by blood disorders such as leukaemia. That is why, like my hon. Friend, I am determined to facilitate and promote discussion and debate on the way forward for the harvesting and use of stem cells for transplant.

I pay tribute to everyone who works to improve awareness and education, including those named by my hon. Friend. I also pay tribute to organisations such as the Anthony Nolan Trust and NHSBT. I look forward to seeing the greater results of closer working together in the future.

Donors for the British and Welsh registries are identified through the national blood donor programme, operated by NHSBT. The Anthony Nolan Trust also campaigns to promote donor registration. Indeed, I registered as a donor more than 20 years ago. All campaigns share the goal of raising awareness of the importance of donation and what it can mean for the lives of others.

I agree with my hon. Friend that it is vital that the message is heard by the young. They are indeed the donors of tomorrow. To help with that, the NHS has developed initiatives such as the "Give and Let Live" education campaign, designed to raise awareness among 14 to 16-year-olds. The campaign has been made available to 6,000 schools in the UK. "Register and be a Lifesaver", an initiative backed by the Anthony Nolan Trust, is campaigning for better education among young people. The Department of Health helped to fund a pilot programme, which was run by NHSBT.

Those campaigns came about following the death from leukaemia of Jeanette Crizzle and Adrian Sudbury. Both cases were tragic examples of how difficult it can be to provide treatment to all who need it. In Adrian's case, it was the rareness of the condition that proved an insurmountable hurdle. For Jeanette, the challenge was the richness of her genetic heritage.

That brings me to the question of matched donors and ethnic minorities. When treating acute blood disorders, it is important that the stem cell units come from a matched donor, usually a brother or sister. Unfortunately, only 25 to 35 per cent. of patients have a matched sibling. That means having to rely on unrelated donors. Finding a donor who is genetically matched, healthy and willing to donate is a mixture of hard work, professional dedication and chance. It is a mammoth task.

The task becomes even harder when the patient's genetic background is complex. Currently, most of the 13 million donors worldwide come from a Caucasian background. Patients from that group have a 90 per cent. chance of finding a matched unrelated donor. However, for patients from ethnic minorities or with a mixed genetic inheritance, the chance of finding a match is only 30 to 40 per cent. That is why I was so proud to open the new centre in Tooting, as it is making a direct contribution to dealing with the problem.

On the question of other sources of stem cells such as cord blood, the Government have taken and are continuing to take strategic and targeted action to tackle the challenge. As I said earlier, it is important to remember that bone marrow is not the only source of stem cells for transplant. Umbilical cord blood is an excellent source of stem cells, and has some clinical advantages over bone marrow.

The NHS cord blood bank is the fourth biggest in the world, with about 14,000 stored umbilical cord blood units. The Government are investing nearly £10 million in order to increase the size of the bank to 20,000 stored units by 2013. The cord blood bank aims to redress the imbalance on bone marrow registries by focusing collection at hospitals with catchment areas that are more ethnically diverse.

My hon. Friend asked about cord blood being discarded. I shall put that into context. In the UK, about 50 per cent. of the samples collected are discarded, but that is due to such things as contamination, infection or low cell counts. It compares favourably with the discarding rate in Spain, for instance, which is about 70 per cent.

The NHS cord blood bank has one of the best records of harvesting and banking cord blood in the world, and its inventory of unique tissue types is second to none. So far, about 280 units of cord blood have been issued, mostly for export. The number increases year on year, because medical advances mean that cord blood can be used to treat a wider range of patients. Just as cord blood collected in the UK can be used to find matches for patients overseas, so we are able to draw on international cord blood banks to find matches for patients here.

I know that my hon. Friend understands the need to look to the future-a time when cord blood may become even more important. A review commissioned by the Department of Health last year recommended further consideration of the collection and use of cord blood, and a joined-up approach to service provision. I assure my hon. Friend that since then discussions have been held with a range of partners on the collection, storage, commissioning and use of stem cells for transplant.

I know that my hon. Friend is interested in the question of swabs versus blood tests. I look forward to receiving the pack that he has promised me. I welcome the pilot that the Anthony Nolan Trust is running. I confirm that the NHS identifies donors through the blood donor programme. Using buccal or saliva swabs would, in the view of clinicians, add another unnecessary layer of testing, without an overall cost or clinical benefit. Blood samples are more efficient and give us more genetic material to work with.

The cost of the tissue typing is the same whether the DNA used is extracted from swabs or from blood. Although the quantity of DNA isolated from swabs is sufficient for the initial tissue testing, it does not give enough DNA to perform additional tests, such as confirmatory or high-resolution typing, which are normally requested by the transplant centres and are required prior to transplant. Additionally, transplant centres sometimes request DNA samples for repeated confirmatory tests. I remain interested in the Anthony Nolan Trust pilot.

My hon. Friend suggested that the UK was underperforming in some way. That is not a description that I recognise. We are the fourth largest in the world for cord banks; we have the second highest number of human leukocyte antigen unique samples stored; we have the second biggest registered cord blood bank after New York; and we have an excellent reputation in science. However, we can always do more, and we will continue to do so.

My hon. Friend also mentioned age limits. I confirm that the NHS recruits donors between the ages of 18 and 49. Donors remain on the registry until the age of 60. The other registries in the UK have lower age limits. Given the number of questions raised as a result of today's debate, I have asked officials to open discussions about bringing age limits in the UK into line with those of the NHS. The decision, of course, will be a matter for the registries themselves.

I thank my hon. Friend for his contribution and for his immense interest in what I believe is an important matter. I join him in wanting to ensure that the UK remains at the forefront of this work, and that we are able to meet our obligations in matching stem cell donations to patients in need of a transplant.