BAME Blood, Stem Cell and Organ Donation

Mohammad Yasin Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin (Bedford) (Lab)]

I beg to move,

That this House has considered BAME blood, stem cell and organ donation.

It is a pleasure to serve under your chairmanship, Sir Henry. I first became aware of the issue of blood, stem cell and organ donation within black, Asian, mixed race and minority ethnic communities when I met Poonam Shah, who works in my constituency. Poonam’s husband, Rakesh, died from a blood disorder at the age of just 35. Due to Rakesh’s Indian heritage, he struggled to find a donor with the 10 matching genes that would have helped ensure that his blood would accept the donor’s cells. Eventually, an anonymous donor with eight out of 10 matches was found from South Africa for Rakesh, who had a stem cell transplant in October 2014.

[Mark Tami (Alyn and Deeside) (Lab)]

I am very pleased that my hon. Friend has secured this important debate. I should declare that I am chair of the all-party parliamentary group on stem cell transplantation. My hon. Friend makes a point that is particularly relevant for the BAME community—often the donor will come from outside the UK. There have been a number of cases where there have been difficulties with visas. Time is vital in this area and we need a fast-track process to make sure that those people can get here as quickly as possible.

[Mohammad Yasin]

My hon. Friend makes a very good point. I recognise the work that he has done as the chair of the APPG on stem cells. This is a very important issue, and that is why we are having this debate today.

[Afzal Khan (Manchester, Gorton) (Lab)]

I congratulate my hon. Friend on securing this debate. Those from the BAME community make up 5% of blood donors, yet they make up 14% of the population. The Imam Hussain Blood Donation Campaign was set up in my own city of Manchester; it has had a tremendous success rate of 3,408 donations. To be successful, it is important to ensure that cultural initiatives such as that are taken, so that we can carry on with improvements. If not, we will carry on experiencing difficulties.

[Mohammad Yasin]

My hon. Friend makes an important point and I will refer to similar points later in my speech.

Sadly, despite receiving a transplant, Rakesh’s condition, MDS, was so advanced that he died in December 2014, leaving Poonam and their two young children. After Rakesh’s death, Poonam decided to raise funds for Anthony Nolan and raise awareness among people from south Asia and other ethnic minority backgrounds about stem cell donations.

[Mr Tanmanjeet Singh Dhesi (Slough) (Lab)]

I thank my hon. Friend for securing this debate. Does he agree that Health Ministers should work more closely with grassroots and community organisations? Currently, donors from Asian or other minority ethnic backgrounds make up just 15% of the stem cell register, but campaigns such as Cure Kaiya, which held an event in my constituency, and Match4Rajie are encouraging more people from BAME backgrounds to become registered donors.

[Mohammad Yasin]

My hon. Friend makes a very important point.

In November, Poonam’s fundraising efforts were recognised when she was awarded individual fundraiser of the year. I was so inspired by her story that I wanted to help raise awareness of the issue in BAME communities, because none of us know whether we or one of our loved ones might be a name on that list in need of a match, desperately waiting for a lifesaving opportunity. The reality is that many patients will not receive the stem cell transplant they need, because either there is no donor available or a donor cannot be found quickly enough. Only 20% of BAME patients receive the best possible match, compared with 69% of white, northern European patients.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter forward. I have always supported the issue of organ transplants, including for BAME people. With only six out of every 100 people who have signed up to the NHS organ donor register having told us that they are from black, Asian or minority ethnic communities, does the hon. Gentleman feel as I feel that when it comes to organ donation, every race is needed and we should urge the Minister to respond with a focused campaign for BAME donation? That is the best way forward and I think the Minister needs to do that.

[Mohammad Yasin]

I agree with the hon. Gentleman’s point. The disparity urgently needs to be addressed and I therefore welcome the very timely review by my hon. Friend the Member for Wolverhampton South West (Eleanor Smith) on BAME stem cell and organ donation.

The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. According to the review, fewer than 5% of donors who gave blood in the past year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are black. BAME people are unequally affected by that, as they are subject to a higher demand and shorter supply than other groups. The most common blood diseases that affect BAME communities are thalassaemia and sickle cell disease.

[Mrs Helen Grant (Maidstone and The Weald) (Con)]

I congratulate the hon. Gentleman on securing this important debate. While we know that there are problems and that there is much still to do, will he join me in congratulating Kanya King and the MOBO Awards on all the great campaigning work that they do to increase BAME blood and organ donation? They do an excellent job. Will he also join me in encouraging other organisations and companies with existing BAME reach to campaign in a similar manner?

[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.