Blood cancer patients
are dying waiting
for their stem cell match
By Pamela Bousejean, UR the Cure Founder
When Matt “Biff” Thompson’s Mum needed a blood stem cell transplant to cure her cancer, he did not hesitate to join the blood stem cell donor registry in the hope that he could maybe save someone’s life one day too.
However, he was shocked that it wasn’t a particularly easy process and after realising that there was a better way to join through the use of mouth cheek swabs, he was determined to make sure that Australia changed the way we recruit blood stem cell donors.
Biff has recently completed “The 2050”, an incredible feat that saw him run 50km every day for 20 days to raise awareness on this important issue! Why “20-50”? Because we need 20,000 people per year to join the stem cell donor registry for the 50 people who are diagnosed with blood cancer every day.
To support Biff, he is asking everyone to email our health minsters about this important issue and sign the petition (links found below and QR codes available on the fact sheet).
I have been advocating to implement cheek swabs in Australia for many years now along with thousands of supporters through my charity “UR the Cure”. We are a partner of the Australian Bone Marrow Donor Registry’s (AMBDR) Strength to Give cheek swab program. My life was saved by a stem cell transplant and UR the Cure’s goals are to increase the numbers and diversity of people joining the donor registry to find more lifesaving stem cell matches for blood cancer patients. Without cheek swabs this is a near impossible task.
At the end of last year, the government released the PWC report of the review undertaken of the HPC (Transplant) Sector that took 4 years to complete. As a result of the review the National HPC Framework was formed. UR the Cure wrote a submission to this review back in 2017 with a number of recommendations; one being to implement the use of cheek swab testing.
The National HPC Framework outlines the problems caused by our dependence on overseas stem cell donors and that improving the donor pool is a priority.
However, the National HPC framework did not provide a solution or a commitment to increasing donor recruitment.
In response to this report, UR the Cure wrote a letter to the Federal government (both the acting and shadow health ministers) and to State governments, and posed 3 main questions:
- If Strength to Give cheek swab testing is not the solution, then what does your government propose the solution to be?
- In what timeframes can the solution be implemented?
- What are your government’s hesitancies in moving forward with the Strength to Give model?
Our confidence in the Strength to Give cheek swab program comes from the results of an independent review completed by the INCA consulting group that showed that the Strength to Give cheek swab program was a success. ABMDR has also provided documents to government showing the viability of the program.
The governments’ response to our questions is that they are committed to improving Australia’s donor pool but that a review needs to be undertaken of the Strength to Give cheek swab program and recruitment methods before a decision can be made. UR the Cure is not satisfied with this response, especially since the last review took over 4 years to complete. We currently have no timelines provided for when the next review will complete or, more critically, when a solution will be implemented.
In the meantime, Australians may die waiting for their stem cell match.
UR the Cure appreciates the complexity of large-scale health care change, but we know in this context Strength to Give cheek swab testing is (at least part of) the answer. Unusually, it appears that money is available. The latest ABMDR public financial reports show sufficient funds to implement a 5-year recruitment program immediately through cheek swabs.
However, this is prevented through Commonwealth-imposed contractual constraints, and at a Federal level change needs to occur to allow AMBDR to access that money. This money from the cord blood stem cell sector has been sitting unused for 20 years and we believe it is time to put it to good use!
Financially and contractually, we know that a cheek swab program is possible and we believe it the most effective way to grow the stem cell donor registry to meet the needs of the 50 Australians diagnosed with blood cancer every single day.
Help us let the Australian governments know that this is what people want!
How you can help
Please support our campaign by emailing our Health Ministers (letter templates) and signing a Change.org petition
Follow us on social media @urthecure and see @Biffrunner for his #The2050 journey
About the Author
Pamela Bousejean is the Founder of UR the Cure, a registered charity with the ACNC (Australian Charities and Not For Profits Commission) that is run completely by volunteers. UR the Cure was founded in 2015 by Pamela who had Hodgkins Lymphoma (a type of blood cancer) and her personal experience in struggling to find a stem cell match to cure her cancer. UR the Cure is an official partner of the Australian Bone Marrow Donor Registry (ABMDR) who run the “Strength to Give” cheek swab program.