13 May Why aren’t people donating their bone marrow?
Around the world and in the UK donating body parts is a rarity. When it comes to organs people are reluctant to give them away, even after death. Even bone marrow stem cells, which is similar to donating blood, is scarce but why?
The Facts about the Bone Marrow
First of all, it’s important to understand what the bone marrow is and what its role is in the human body. The bone marrow, which is made up of stem cells, creates the three main blood cells we need to live. These are the red blood cells which carry oxygen around our bodies, the white blood cells that fight off infections and foreign objects in the blood stream, and platelets which clot the blood when we get wounded to prevent bleeding out. So, when there is a problem with the bone marrow or it fails completely for what ever reason, it can be fatal without treatment.
According to the charity Be The Match, the procedure for donating is much simpler and risk free than donating organs. Similar to giving blood, it takes about 5 hours and doesn’t require sedation. The stem cells are filtered from your blood and collected in a procedure called Peripheral Blood Stem Cell (PBSC) collection. It may require a few days to a week off work after the procedure. In the UK 90% of cases use this method due to its simplicity and safe. So even though the procedure is simple only 2% of the UK population is on the bone marrow register, which is very low compared to the 9 % in Germany.
Why Is it needed?
A bone marrow transplant can be a form of life saving treatment for various cancers such a Leukaemia, Lymphoma and Myeloma, as well as treatment for other disease such as Sickle Cell Anaemia and Aplastic Anaemia. According to Antony Nolan, every 14 minutes someone in the UK is diagnosed with a form of blood cancer. With out it, a patient has to survive off blood transfusions and platelet transfusions, as well as living in a clean room to prevent catching infections.
What do Antony Nolan say about the Situation?
Antony Nolan are the charity body in the UK that register donors and match the donors with the patient requiring the transplant. According to the statistics on their website if you sign up there is a 1 in 800 chance of getting chosen to donate, or a 1 in 200 for males aged between 16 to 30. So, all the fears of donating aside, the chance of getting chosen to donate are pretty slim.
There are also strict guide lines that take into account the health of the donor them self such as you must be over 50 kg or 121lbs. This is so the donner doesn’t suffer any health risks when donating stems cells and so the recipient receives a healthy bone marrow.
Like most charities, Antony Nolan does rely a lot on the influences of donations in regards to financial funds, and social media and the internet to share and reach potential fund raisers and potential stem cell donors. They have both a Facebook and Twitter page.
According to their 2018 annual report, the charity has 800,000 visits to their website this year and their patient information booklet was requested 14,556 times over the course of the year. At the 2017 Virgin Marathon they managed to achieve £584,000 in money raised and have raised £10.6 million overall.
They also stated that they had 54% of MP in Parliament declare them as experts in stem cell research.
Amazingly they have also reported in their 2018 annual report a 28% increase in Antony Nolan donors being selected to donate. This is as well as a recruitment of 49,261 people to join the stem cell register and 684,684 potential donors on the register in total.
So, what are people’s opinions on the matter?
The target age range for bone marrow and stem cell donations are 16 to 30 years olds due to the higher success rate. I spoke to three young people in this age bracket to find out if they would ever consider donating or if not, what would stop them. All of them were unaware of most of the facts about donating and the need for bone marrow transplants.
Lisa who is a 23 year old student said “I wouldn’t even know how you become a donor to be honest, but I would consider signing up in the future”.
I also asked another student, Bethany aged 20, “I have heard about becoming a donor through shared social media posts, I’m not sure I could donate because I have a bit of a phobia of needles”.
The last person I asked, a sales assistant called Jake aged 18 said, “I’ve never really thought about it but of course if anyone in my family needed one, I wouldn’t hesitate to get tested for a match and donate.”
A Case Study- a Mums first had experience
Anne sons was a bone marrow replicant in 2016 after being diagnosed with Very Severe Aplastic Anaemia, a very rare disease in which the immune system attacks the bone marrow preventing it from creating the important blood cells, creating fat cells instead. Luckily her son managed to get a new bone marrow after initial treatment failed to re start his old bone marrow. It took just over 2 and a half months for him to receive the stem cell transplant due to his common tissue type and received a 10/10 match with his unrelated donner.
“He was very lucky”, Anne said. “we were told a donor had been found about after a few months of being in hospital”.
“We were extremely grateful that he found a match from an unrelated donor, especially as me and his father are too old to donate. Previous treatment was unsuccessful so there was no other option.”
Talking about the 2% of the UK population on the register for stem cell donation, she replied, “I think that’s extremely shocking and very worrying. Its hard to believe that so little people are willing to donate and save a life.”
She continues, “obviously I think it’s different when it’s a member of your family, you don’t worry about the potential pain or discomfort because you’re saving the life of a loved one. But like in our family when that’s not possible, you do rely on strangers on the donor list. I think people do needed to be educated on the matter and its importance for this very reason. As well as raising awareness I believe its vital more is done to raise money for the charities like Antony Nolan, who with out their help our son wouldn’t be here today.”
2 years on her son is doing extremely well health wise and works full time.
Conclusion and Future of Bone Marrow Transplants in the UK
Overall its impossible to say what the future holds for stem cell and bone marrow transplants.
Speaking to the three young people and Anne, each with different outlooks on the situation it seems that the idea of pain or discomfort isn’t the main obstacle. The issue is with fact that unless you know someone that needs one or your self require a transplant, the chances are you won’t really see the importance or the value of being on the register to donate.
However things are looking up for the future. As seen in the Anthony Nolan annual report for 2018, they seem to be gaining more and more support by the year. They obviously have a long way to go but they seem to be succeeding in raising awareness through the use of their Facebook and Twitter pages as well as their website. They are also raising millions through the use of fund raising events to support their charity.
Also with the help of people like Anne telling their story and sharing their experiences, hopefully this will also help get more people to sign up and donate.
I have to conclude that there is no real solid reason why people aren’t on the bone marrow register. With the exception of the general public that are over the 30 year age limit or who are not fit and healthy enough to donate, its a very cloudy subject. Its not clear whether its to do with the potential pain and discomfort of donate, a lack of spare time or laziness. The only real correlation that can be seen is the population aren’t aware of the life saving potential they have from giving away 5 hours of there time and taking some days of work. Its all to do with educating the public on the issue and hopefully in the not to distant future charities like Antony Nolan will succeed at this.
