Mohammad Yasin MP: We must end the silent crisis around BAME blood, stem cell and organ donations
The Government must assist communities with a more co-ordinated approach to blood, stem cell and organ donation because this blatant inequality must end, says Mohammad Yasin MP.
I first became aware of the issues with blood, stem cell and organ donation within BAME communities in England when I met Poonam Shah, a woman who works in my constituency whose 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 help ensure his body would accept the donor’s cells. Eventually, an anonymous 8/10 match from South Africa was found for Rakesh, who had a stem cell transplant in October 2014.
Sadly, despite receiving a transplant, Rakesh’s condition - myelodysplasia (MDS) was so advanced that he died just a year later in December 2014, leaving Poonam and their two young children.
After Rakesh died, Poonam decided to raise funds for Anthony Nolan and her fundraising efforts were recognised when she was awarded the Individual Fundraiser of the Year last year. I was so inspired by her story that I wanted to help raise awareness of this issue in the BAME community. Because none of us know if we or one of our loved ones might one day be a name on that list, desperately in need of a match, desperately waiting for a life-saving opportunity.
And the reality is that unfortunately, many patients will not receive the stem cell transplant they need either because there is no donor available or because a donor cannot be found quickly enough.
Only 20% of BAME patients receive the best possible match, compared to 69% of white northern European patients.
This disparity urgently needs to be addressed and therefore I welcome the timely review of BAME blood, stem cell and organ donation chaired by Labour MP Eleanor Smith.
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 last 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 disproportionately affected by this 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.
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 is something the review recommends.
The review found that lack of knowledge or awareness, religious permissibility and lack of trust in the medical institution are the three main areas preventing people signing up.
Yet it is vital to get more young people from BAME backgrounds, such as students, to sign-up to the stem cell donor register because research shows that the younger the donor, the more likely the patient is to survive. Anthony Nolan’s Hero Project is doing great work in this area.
And there is a real desire in the BAME community, especially in the younger generation to turn this issue around.
I was touched by actions the actions of Bandhan Bedford Group – a group of Asian professional women in my constituency who generated 300 new names on the stem cell register after organising a stem cell drive this month with support from the blood cancer charity DKMS in response to the urgent appeal to help Kaiya Patel, a five-year-old girl, who is dying of a rare and aggressive form of leukaemia.
In blood alone, it is estimated that we will need 27,000 new donors in 2018/19 from BAME communities just to keep up with the growing demand.
I hope that this timely review which recognises the scale of this ‘silent crisis’ is enough to spur the Government to assist communities with a more co-ordinated approach because this blatant inequality must end.
Mohammad Yasin is Labour MP for Bedford.