What are the chances of you being a match?
The chances of you being a match, that perfect stranger, is actually pretty low. In Australia, currently only one in 1,500 people registered on the Australian Bone Marrow Registry (ABMDR) will ever receive a call.
Doctors first test a patient’s brother or sister as they offer the best chance of being the perfect match. However, there is only a 25 percent chance one will be at match.
The remaining 75 percent of patients need to find a someone signed up to one of the worldwide registries. There are some pretty generous people out there and TLR is looking to find more.
How you are matched – HLA testing
Being a stem cell match is way more complex than matching your blood type. Your blood type doesn’t even play a factor in determining if you are a match. In fact, the patient’s blood group will change to that of the donor’s once the transplant has been successful.
Being a stem cell match is all about having the same tissue type, and that comes down to one factor – tiny protein markers found on the surface of every cell called HLAs, or Human Leucocyte Antigens.
HLA markers play a fundamental roll in a healthy immune response. The patient will be inheriting your immune system so you both need to be a close tissue match.
HLAs are inherited, with half coming from your mum and half from your dad. This is why ethnicity plays such an important factor in HLA matching. People who share the same ethnic background are more likely to be a match. The better the HLA match, the greater the chance that patient can manage or even avoid GvHD, and of course, the more people registered on the ABMDR, the greater the chance of finding the best matched donor.
In 2019 the ABMDR introduced a new way of getting tested introducing cheek swabs as a non-invasive way of registering to be a potential stem cell donor. Joining the ABMDR will now be as simple as scraping the inside of your cheeks with 4 cheek (buccal) swabs. These swabs pick up some cheek cells and that is all the laboratory needs to determine your tissue type. The laboratory sends this information back to the ABMDR and your tissue type and details will be uploaded onto the national database and you will be official enrolled as a potential donor.
You will stay on the register until your 60th birthday.
Contacting the ABMDR
Once you are registered, you won’t usually be contacted again unless you come up as a potential match. If that happens, you will be called and asked if you are still willing to donate before they start the process of making you a potential life saver.
If there are any changes to the information they have on file, please call (02) 9234 2405. This could be a change in married name, your address or phone numbers. Let them know if there are any changes in your health status which could prevent you from donating, including temporarily including pregnancy.
Can I change my mind?
You can change your mind at ANY time. Being on the registry is completely voluntary and donating your stem cells is an important decision.
There are many reasons why you may not want to donate any more, but the MOST important part is to let the ABMDR know you no longer want to be active on the registry. Please contact the ABMDR on (02) 9234 2405 to update ANY details.
Most importantly, please know that there is a point of no return for the patient in this process. If you come up as a match, one week before the donation date the patient’s own bone marrow is destroyed in preparation for your stem cells. This is not something the doctors can reverse so once done that patient is entirely reliant upon your stem cells and they will die without them… no pressure… but please be sure to let someone know WAY before this if you change your mind.
Privacy & Confidentiality
The only information the TLR Foundation will keep is your name and your email address to be put on our database so we can keep in contact and thank you for signing up. Getting more people on the Australian Registry is deeply personal to us, and if one life can be saved that should be celebrated.
The rest of your joining up information goes directly to the ABMDR. They respect your privacy and will store your information while protecting your confidentiality. They will not provide information which would identify you to anyone outside of the ABMDR or the health professionals involved if you come up as a match. If the match is confirmed and you agree to donate, only the hospital and the health professionals involved in the collection process will know your identity.
For any additional information about your privacy please go to abmdr.org.au/privacy-policy-2/ or call them on (02) 9234 2405.