BAME Blood, Stem Cell and Organ Donation

Eleanor Smith Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin]

I agree with the hon. Lady. BAME donors make up 15% of the stem cell register; black donors make up just 1.2% of potential donors on the British Bone Marrow Registry. I hope the Minister shares my concerns about those statistics and that she will commit today to agreeing in full to the recommendations of the review by my hon. Friend the Member for Wolverhampton South West.

[Eleanor Smith (Wolverhampton South West) (Lab)]

I thank my hon. Friend for securing this timely debate. My review, “Ending the Silent Crisis”, is about the lack of stem cell and organ donation in black and minority ethnic groups. I hope that the Minister will look at the review’s recommendations, take them on board and come back to us on them.

[Mohammad Yasin]

I thank my hon. Friend for her hard work on the review and I look forward to working together on the issue.

It is clear that increasing the number of BAME stem cell donors requires a many-sided approach, but one of the most important things that can be done is to integrate information about donation into the formal curriculum, which the review recommends. We already know that education works. For example, Anthony Nolan and other blood disorder charities have had great success working with schools, universities and colleges across the UK. Just last month, I wrote a letter to all schools with a sixth form in or near my constituency to ask whether they would consider using an assembly or personal, social, health and economic lessons to teach students about the importance of donating stem cells, blood and organs. I am delighted that one of the schools has already agreed to do so.

Since the Hero Project started in 2009, more than 32,000 people have signed up to the Anthony Nolan stem cell donor register, and approximately 16% of them are from a BAME background. The Hero Project recognises that the different religious views about organ donation are one of the barriers preventing people from signing up to the organ donation register. Anthony Nolan and other blood disorder charities recognise and respect those diverse views and tailor their message to suit different interpretations of faith. They focus on what people can do to help, not on what they cannot do.

The review found that the three main barriers that prevent people from signing up are a lack of knowledge or awareness, religious permissibility and a lack of trust in medical institutions. The opt-out system for organ and tissue donation, with additional safeguards, is welcome, but there must be an awareness campaign that is mindful of the cultural sensitivities relating to organ donation and addresses the significant pressure on NHS Blood and Transplant’s capacity to accommodate any rise in organ donations.

It is vital that we get more young people from BAME backgrounds, such as students, to sign up to the stem cell donor register, because the research shows that the younger the donor, the more likely the patient is to survive. What steps will the Minister take to ensure that all students aged 16 and above have the opportunity to learn about the importance of donating stem cells, blood and organs? There is a real desire in the BAME community —especially among the younger generation—to turn this issue around.

I was touched by the action of the Bandhan Bedford Group, a group of Asian professional women in my constituency who helped to add 300 new names to the stem cell register. They organised a stem cell drive this month in Bedford, with support from the blood cancer charity DKMS, to help Kaiya Patel, a five-year-old girl who I understand is still waiting for a lifesaving match for her rare and aggressive form of leukaemia. I know that similar drives are taking place around the country, but this is a race against time. It has been reported that, to have a chance, Kaiya needs a transplant within the next two months.

There is a strong will out there to increase the life chances of people from a BAME background. I hope that this timely review, which highlights the scale of this silent crisis, is enough to spur the Government into assisting communities with a more co-ordinated approach. This blatant inequality must end.

--- Later in debate ---

[Jackie Doyle-Price]

That is a point well made. It is the same for blood, of course—donors do not have to die to give blood. People who give blood do so regularly because they get into the habit and it has become normal. Perhaps we need to do a lot more about stem cell transplants.

I am particularly moved to be having this debate today because only this weekend I lost a very good friend of mine to lymphoma at the age of 47. That brings home how cancer and illness can kill people at a very young age. It will be in honour of my dear friend David Furze that I will do something to reboot stem cell donation.

On the barriers to more donation, some have serious concerns about faith and religious beliefs. Tackling those concerns is a big challenge for us in Government, because of the element of trust. The hon. Member for Bedford mentioned that quite often people do not trust medical professionals, but they trust Government even less. We must find innovative ways of getting that message out. We need the right messengers. Dare I say, the people in this Chamber are among the right messengers? Most of us have respect in our communities and are able to show leadership in our communities. We can go out, speak, raise awareness and encourage donation. I have given NHSBT the challenge to do exactly that.

[Eleanor Smith]

Other organisations are also trying to do that, such as the African Caribbean Leukaemia Trust, but they get very limited resources. One of my recommendations is about sharing resources with groups that are already organised and going out to the community, because with limited resources they can do very little.

[Jackie Doyle-Price]

The NHSBT strategy has that in mind. Recently, we had a faith summit where we worked with the individuals who are able to go out and give those messages. The approach must be organic. I have also tasked NHSBT to work with me to develop an MP’s toolkit to help us to go out in our constituencies and develop the right networks and links. The hon. Lady is right to say that people from these communities will listen to their elders and other representatives, and that is why we need to work through those people. We are doing that with a number of organisations.

Turning to stem cell donation, all hon. Members articulated beautifully the real disparity of access to appropriate treatment. It is only by building and diversifying the UK stem cell register that we will be able to provide the best match for patients. Hon. Members have raised the issue of an international register; the Department funds Anthony Nolan’s efforts in this area. Members of the World Marrow Donor Association already promote global collaboration. We will continue to support that as best we can, working with Anthony Nolan and NHSBT.

NHSBT continues to grow both its cord blood banks and bone marrow donor registers, with the explicit intent of increasing the number of black and Asian donors. Overall, we have paid more than £20 million to NHSBT and Anthony Nolan specifically for stem cell donation since 2015. So far, we have made some progress in increasing donations from black, Asian and minority ethnic backgrounds, but not nearly enough to address the disparity. We will all continue to make our efforts count in that area.

I pay tribute to the initiative of the Bandhan Bedford Group that the hon. Member for Bedford mentioned. If there is a good local champion that captures local imagination, real progress can be made. We all need to encourage those sorts of activities.

Turning to blood, there is a real need for black donors and donors from the Asian community to increase supplies, not least because they are more likely to suffer from diseases that will require blood transfusions, specifically sickle cell anaemia. We are undertaking initiatives to increase the number of black and Asian blood donors. We are holding “know your type” events in high population areas, where people can learn their blood type with a finger prick test. That will help NHSBT to manage its blood stocks and develop a database of exactly the type of blood that there is a shortage of.

We are supporting others, such as the music of black origin awards, to reach audiences. Those who watch “Britain’s Got Talent”—I watch it—will have seen the B Positive choir, who did so much to raise awareness and were absolutely fantastic.