Education about stem cell donation, used to treat patients with blood cancers and blood disorders, could see an additional 55,000 young people a year join the UK stem cell register, the charity Anthony Nolan has revealed.
Health education will be compulsory in all state-funded schools in England from September 2020, and Anthony Nolan is urging the Department for Education to add stem cell donation to statutory guidance already covering blood and organ donation for secondary school pupils.
Many blood cancer patients will not receive the stem cell transplant they urgently need because there is no donor available, or because a donor cannot be found quickly enough. Anthony Nolan estimates that, by including stem cell donation in health education, up to ten percent of the 550,000 students in each year group could choose to join the UK stem cell register once they become eligible at 16. The charity commissioned research which shows a lack of information about what stem cell donation involves, and how it could potentially save a life, is currently stopping young people from joining the stem cell register.
The charity surveyed 460 young people who had recently left state-funded secondary school in England. It revealed the majority (82%) had heard of stem cell donation, but their understanding of what it involves and why stem cell donors are needed was mixed.
Results show that school leavers are often unaware that they have the power to be a lifesaver, with one in five (21%) of young people who had not joined the UK stem cell register reporting they had not heard of it.
Fewer than a quarter of survey respondents (22%) knew that stem cells can be donated via the bloodstream, even though this is the case for nine out of 10 donors. Research also showed that 16% thought that stem cell donation is very painful, and nearly half (44%) incorrectly thought that it uses embryonic stem cells, grown from cells found in the embryo when just a few days old.
The most popular reason young people gave for not joining the register was a desire for more information about what stem cell donation involves (42%).
A small change to statutory guidance will help raise awareness, tackle misconceptions and show young people how they can make a positive contribution to society. Henny Braund, Chief Executive of Anthony Nolan
Martin Burke, 62, had a stem cell transplant in 2014, after being diagnosed with Myelodysplastic Syndrome. His donor, Charlotte, was 17 years old, and signed up to the Anthony Nolan stem cell register after a volunteer from the charity’s education programme came to her sixth form college. She received the news on Christmas Eve that she was a match for Martin and said it was “the best Christmas present I have ever had”.
Anthony Nolan has been involved in educating 16-18-year-olds about stem cell, blood and organ donation since 2009; the work has resulted in more than 100 young people donating stem cells to patients in need of lifesaving transplants. The charity’s education programme, the Hero Project, trains volunteers to deliver presentations to 16-18 year olds in sixth form and college. For many of these students, it is the first time they have been taught about what stem cell donation involves.
Martin now volunteers for Anthony Nolan as a Hero Project speaker himself, educating 16-18 year olds about the process which ultimately saved his life. Around 10% of students who receive a Hero Project talk currently go on to join the Anthony Nolan register.
He said: “Most of the students I speak to aren’t aware of what stem cell donation involves and how they can join the register. They generally have good awareness of blood donation, but usually only know about stem cell donation if they have a personal connection. If they have heard of it, they usually think it involves an operation. When you can get it across to them that you can donate via blood, it’s a lot less frightening.”
Henny Braund, Chief Executive of Anthony Nolan, said: “We know a lack of information about stem cell donation is preventing young people from joining the UK stem cell register. A small change to statutory guidance will help raise awareness, tackle misconceptions and show young people how they can make a positive contribution to society. It could also lead to an additional 55,000 young people a year joining the stem cell register once they turn 16.
“We are aware that stem cells are covered by the new Key Stage 4 science curriculum, however, as this focuses on their use in medicine, rather than the act of donation, health education still has an extremely important role to play.
“By making this small change, and including stem cell donation in health education, the Department for Education could give hope to blood cancer patients in desperate need of a lifesaving stem cell transplant.”