The Worldwide Bone Marrow Registry
Have you heard of the bone marrow registry? Well neither had I, not until my cousin was diagnosed with leukaemia. Bear in mind that I was at this time a final year medical student immersed in a hospital environment, yet still this aspect of medical care was new to me.
There are a few severe forms of cancers and blood disorders that can cause so much disruption to your bone marrow – the blood factory inside your bones – that a complete bone marrow transplant is the only effective treatment. This process essentially involves an entire depopulation of the diseased bone marrow and then repopulating that vacant space with newly donated, healthy bone marrow. It is an extreme form of treatment, but one that has saved countless lives.
In order for this treatment to be available there needs to be a bone marrow donor. This cannot be just anyone, for the bone marrow that is donated must perfectly resemble that of the recipient – this is called a matched donation. The genetics dictate the specific type of bone marrow a patient might have and logically doctors will first check close family members for a match. Surprisingly as little as 30% of patients are able to find a match within their family and so the majority of patients have to search for non-related donations. In contrast to the relatively few blood types, there are many thousands of variances in tissue types and this makes it challenging to find that perfect match.
In 1974, an American family who was desperate to find a match for their son, with no match found in the family, went on to conduct an international search in hope. Remarkably a match was found, identified via a blood bank as far away as Denmark. This was the first unrelated bone marrow donation to have ever taken place. It also started what was soon to become the bone marrow registry.
There were many sceptics to the registry who asked: ‘who would donate to a stranger?’ Well, with over twenty-three million donors registered worldwide and over fifty-five thousand bone marrow donations to date (and counting) the sceptics have truly been answered.
What is the bone marrow?
The Bone marrow is a soft tissue found in the centre of certain bones in your body. It is this bone marrow that creates and protects your blood stem cells. Blood stem cells are general ‘precursor’ cells and with the right instruction they can grow into any of the cells found in your blood stream – oxygen carrying red blood cells, infection fighting white blood cells and platelets that help stop bleeding.
What is involved?
Advances in modern medicine have allowed doctors to collect the important stem cells directly from blood stream and not from your bones – thus removing the need for an anaesthetic. This is termed a Peripheral Blood Stem Cell donation (PBSC) and makes a donation significantly more appealing. Similar to a prolonged blood transfusion, you are connected to a machine that delicately harvests stem cells from your blood. These are then transfused to the patient in a similar way a blood donation would be made. (http://www.youtube.com/watch?v=lv2LSVgNWjg#t=117)
There are occasions when the doctor may still request actual bone marrow from the donor. This is however, a far less aggressive procedure than the perceived image of a surgeon drilling into your bones. It does still involve a general anaesthetic but the marrow itself is obtained by a needle and syringe from your hipbone.
When can you donate?
If you are aged 16-45 (depending on your country) and are otherwise healthy you can join the register today but you will only donate if the right match comes up. This is actually quite rare and it may even never happen. The probability is reported to be between 0.5-1% for a registered donor to actually donate.
How can you register?
Your tissue type needs to be identified. This can be achieved from a simple saliva sample, a cheek swab or sometimes a blood sample. You have to answer questions to indicate you are in suitable good health and provide up-to-date contact information, this is important – if you are the match, they need to be able to find you.
Why should you donate?
There are too many patients who are still unable to find a stem cell donor. If you are of Northern European descent you have a convincing 90% chance of finding a match, but if you descend from South Asia your chances plummet down to less than 1%.
Despite the huge number of international registrations, there is a shocking disparity of uptake between continents. Until 2011, India did not even have a bone marrow registry – let alone any registered donors. A perfect match is based on genetics and therefore easier to locate within similar ethnic groups. As a consequence, the disproportionately low number of registrations from Indian, Hispanic and African communities, mean that some patients will never find a donor.
At this point I would like to refer back to my first point –before my cousin contracted leukaemia, why was the bone marrow registry unknown to me? For fear of ignorance I consulted my friends and colleagues both at home and abroad and it seemed I was not alone. With nearly 23 million registered donors worldwide, why is there still so little awareness in the public eye?
So what can we do?
The only current institutional method to encourage recruitment is at the time of a regular blood donation. This usually involves leaflets and a display at the time of donation. But with relatively few people donating blood on a regular basis, this method is just not reaching the general public.
The more popular recruitment drives, usually stem from friends and family of current bone marrow recipients. For example, the catch phrase ‘Give a Spit’was initiated by friends of an Indian student who was struggling to find a match because of the complete lack of awareness in India.
It is the college and university campus that are the breeding ground for these ideas, pioneered by the students who are able to capitalize on their environment; some campuses are bigger than many small towns but populated with a similar demographic. With the right marketing, it can quickly become popular or even ‘cool’to register, particularly when the sports teams get involved. This ‘cool’factor was particularly played upon with a recent celebrity endorsed YouTube video promoting the bone marrow registry. Although these efforts are really making a difference, evidenced with the current campaign to swab 100K cheeks, why should we be relying on student entrepreneurism to keep the registrations coming?
With hesitant expectation, I look towards national education systems. Blood and organ donation are only commonplace topics in Western schools, and even there, they still do not feature on the national curriculum. The Anthony Nolan Trust gives presentations to students aged 17-19 in the UK to promote all aspects of blood, organ and bone marrow donation (http://www.anthonynolan.org/how-we-help/education-register-be-lifesaver) but the area they cover is limited and the team is small. The strong drive for blood and organ donation to be on the curriculum should be joined by the growing bone marrow campaign to ensure that they are all included. When this is achieved it might just provide the exposure required to reach people of all backgrounds, all ethnicities and allow this treatment to be available to all.
This is not an issue isolated to one country or one demographic; it is an international issue and has been so far managed with great effort by few. If we can just make small changes permanent, then the idea that someone has to go without a donor will be a thing of the past.
If you were given the chance to save a life, would you say no? Register today!
For more information regarding country specific details follow the link below: