World Marrow Donor Day (WMDD) is a time to say thank you to all the bone marrow/stem cell donors from around the world. I am so incredibly thankful to my donors (I had a double cord blood transplant so technically I have 2 donors), words cannot describe how grateful I am for my second chance at life, “thank you” does not seem enough. I’m nearing my 5 year “remission anniversary” this year and thebest way I feel like I can thank my donor is to live my life to the full – and I don’t necessarily mean jumping out of a plane and doing crazy things all the time! For me living life to the full is to never take anything for granted, understanding what is truly important in life, spending time with family and friends and the work I do through UR the Cure is also something really important to me and something I am very passionate about. There’s a lot more to describe what living a full life means but that’s for another day!
World Marrow Donor Day (WMDD) is a great initiative and there are so many countries all around the world taking part with donor drives and registration days. Thanks to Renee whose son Jake has been searching for a match, she is running a registration day over in Western Australia which is really great. Although I can’t help remember when Kate, God rest her soul, wanted to run donor drives in South Australia not so long ago and she was unable to do so because of the nature of the general structure and system Australia currently has. The fact of the matter is that due to funding structures, Western Australia has the resources to do so but South Australia doesn’t. Kate unfortunately passed away recently, she struggled to find her stem cell match due to her mixed Hungarian heritage. On a side note another patient from South Australia also wanted to hold a donor drive at a big Croatian festival – a young and ethnically diverse population we so desperately need on the registry, and was also unable to do so.
On WMDD, UR the Cure did not organise a registration day or donor drive and has instead been focusing on trying to drive change in Australia, because until fundamental changes happen we can never really progress to increase the numbers and diversity of people on the Australian Bone Marrow Donor Registry (ABMDR). It’s simply too hard to join the bone marrow donor registry and nothing has changed in over 20 years. In Victoria our restrictions mean that even if I was to organise a donor drive, the maximum number of blood samples that could be taken are restricted to about 30 or 40 anyway. These are the sorts of problems that were highlighted in the submission we wrote to the review of the Australian Bone Marrow transplant sector recently. This submission continues to be a powerful tool as it gets shared through different networks. (download the submission here http://www.urthecure.com.au/advocacy/)
There are simply too many road blocks and restrictions in Australia and the submission we wrote put forward recommendations to basically make it easier for people to join the ABMDR. Because once these changes happen we can truly start making a difference and SAVE MORE LIVES!
The submission has so far been a great success and this is just the start. We had over 500 survey respondents whose opinions made a massive contribution to the submission (and to be honest I had to hold off on further promoting that survey at the time because there were too many people responding for the work load I could handle)! After the document was submitted to the review panel, the Health Minister of Australia, the Hon. Greg Hunt MP also received it and provided a letter response to make sure the reviewers read and considered its recommendations. It was also recently presented at the national Australian Bone Marrow Donor Registry (ABMDR) donor coordinators meeting and has had some media attention, although the media have been difficult to engage – they only seem interested in telling repeated stories of patients struggling to find their match to pull on the heart strings of the audience, rather than looking at the underlying issues and how we could solve them which is frustrating.
Everyone else around the world are free to run donor drives, registration days and heavily promote the cause at full scale and I feel in Australia that we are shackled by the system. Australia simply does not support such activities in many different ways; no matter what angle you look at it, whether it’s through poor data transparency (read the submission to understand this more), complex funding structures for different states, whole blood donations required to join vs what they do overseas where they use easier saliva samples to join, restrictions on the number of samples that can be taken annually again due to limited funds and so much more. And I keep wondering why? Why is it so difficult? Why is Australia so behind and don’t have the same abilities as overseas organisations? Why have we not had any progress in the last 20 years? Why has it not been on the agenda earlier? Is it simply due to the bureaucracy of it all? And I hate to think this, but would the situation be different if this was affecting the white North Caucasian population?
When you start looking deeper into the bureaucracy – the complex funding structures, the way the key organisations are structured, their policies and strategic plans, board members and committee representation as well as those who are the key decision makers in government, it starts to paint a clearer picture. I don’t mean to personally attack those people in the organisations, they are good people who are truly trying to make a difference, but overall it’s the complex nature of the way these organisations are structured at their very core. There is little to no representation from people of ethnic and indigenous communities or any patients and their families involved in any of the committees. These are the people who are most affected by the issue yet have the least influence within the organisations to drive the changes that it needs. We are trying to engage the younger populations to join the registry yet there are no young dynamic people at the core of these organisations to launch them out of their rigid and old fashioned ways. To understand this better take a look at the Cancer Council Victoria, who have specific policies about improving cancer outcomes for people from multicultural backgrounds. They saw that there was a problem – that cancer outcomes were worse for people from these backgrounds compared to those from North Caucasian backgrounds, and they acted to change this by introducing policies into the core of their organisations that become part of their strategic plans and thus driving changes with the programs that they run on the ground level.
How can we expect change if the very organisations who exist for the purpose of recruiting bone marrow donors do not have the very basics implemented into the core of their organisations to take Australia to where it needs to be?
We need to show Australians who have an ethnic or indigenous heritage that we care about them too. And these days in multicultural Australia it affects a lot more people than you think. You don’t need to be born in Italy for example to be someone who has an ethnic heritage. Many Australians have mixed heritages in their blood line. The sad truth is that as we slowly wait for change, more Australians are dying.
So today on World Marrow Donor Day, as well as thanking all the heroic donors out there I am also hoping and prayingto see some significant changes in Australia by the time the next World Marrow Donor Day comes around.
- Pamela Bousejean, founder at UR the Cure