Louise Stevens remembers her four-year-old son Jack as “pure joy – loved to dance, loved music, loved – oh God, he just loved people”.
“He was so kind,” she says. “Whoever was in front of him, he would find a compliment for them. It was different each time, it wasn’t rote learned, it was so genuine.”
Every day since 18 November 2021, when Jack lost his battle against a rare form of leukaemia, Stevens has lived with the knowledge her youngest child might still be alive had a stem cell match been found in the bone marrow donor registry. “If the registry was however many people stronger – it only takes one.”
Each year 1,000 Australian patients will need a stem cell transplant – but only 400 will receive one, according to Lisa Smith, the chief executive of the Australian Bone Marrow Donor Registry.
“We don’t have good data on how many of those patients died while waiting for their perfect match, but it’s certainly a big disparity.”
Bone marrow donations provide the stem cells that are required for stem cell transplants, which are life-saving treatments for people with leukaemia and a range of other blood cancers. The procedure infuses healthy blood-forming stem cells into the body to replace bone marrow that’s not producing healthy blood cells.
There are only 140,000 donors on the Australian register, and that number is declining as donors are retired at the age of 60, with the register onboarding fewer donors than it is losing.
There are only 50,000 donors within the clinically preferred age range of 18 to 35, as Smith says, “the younger the donor is the better the outcome for the patient”.
‘Bureaucratic inertia’
The registry has $13m it wants to use to expand potential donors through a campaign raising awareness that it only takes a painless cheek swab to join the registry.
But the registry needs commonwealth and state government approval to spend the money which has been pending – “caught in a bureaucratic inertia” – for years, Smith says.
The registry formalised a business case in 2019 seeking approval to spend the money, which had accumulated from exporting Australian umbilical cord blood overseas over 20 years, to fund a campaign to expand the registry in Australia.
The jurisdictional committee for the blood stem cell sector received advice from PwC as well as a clinical advisory group regarding whether and how that money should be released, but has not released those reports despite freedom of information requests which were lodged by the former senator Rex Patrick on behalf of the independent MP Dr Monique Ryan.
Ryan told Guardian Australia: “Every day we wait for the government to release the $13m is a day someone could lose their life to blood cancer. Funding our bone marrow registry properly will save lives.
“The money is there, and not only is the government refusing to release it, it has now denied access to a secret report that shows how that money should be spent.
She says the reason given for not making advice over the registry public is that “the release of this taxpayer-funded report ‘could interrupt or create difficulty in discussions and decisions that are in progress between the Commonwealth, States and Territories’.
“This decision is very disappointing. I urge the government to release the report and fund the bone marrow registry so we can get on with saving lives,” Ryan says.
A spokesperson for the Department of Health and Aged Care says the revenue is available to fund all blood stem cell sector activities including but not limited to donor recruitment but “any decision on the use of [the registry] funds must be made jointly by all governments”.
‘It’s deeply uncomfortable’
The registry is a charity which is jointly funded by state and commonwealth governments, with funding for overseas donations coming from the commonwealth government and funding for the recruitment of local donors in Australia coming from state governments.
Under the status quo, without enough domestic donors on the registry, Australia is reliant on overseas donors, with eight out of 10 patients receiving donations from people outside Australia, costing $50,000 a donor.
“We have this expectation that the rest of the world will supply their donors willingly to us, but the reality is we have large populations in Australia that will really struggle to find a match overseas,” Smith says.
The donor’s immune system has to be genetically compatible with the recipient’s to ensure the donor’s blood does not attack the body of the recipient and therefore depends on how many donors there are that share the recipient’s ancestry.
Because most donations globally come from north-west Europeans with white Caucasian backgrounds, the lack of diversity within the registry means the chance of finding a match is even smaller for Australia’s multicultural population from ethnic minority backgrounds, Smith says.
“If you are Indigenous, you can’t find a match overseas, and your only hope is to find a match within Australia,” Smith says.
Bob Katter, the member for Kennedy, raised the issue of Australia’s shrinking bone marrow registration in parliament as a question addressed to the health minister, Mark Butler, on 7 February this year, suggesting cheek-swab programs could be introduced within universities, the military and the public service with a donor age up to 40.
Katter became personally involved in raising the profile of the issue after his nephew Liam O’Brien was diagnosed with leukaemia, and required stem cell donation.
Butler told parliament: “It’s clear to me that our bone marrow donation system in Australia is too small – there aren’t enough people on the registry – it’s too slow, and it has not kept up with international standards.”
He called on the country’s health ministers “to cut through some of this jurisdictional bureaucratic red tape – to do everything we can to clear the way – that is now denying patients in Australia the best chance to access this life-saving technology.”
A communique from the health ministers’ meeting on 24 February approved immediate release of $1m of the $13m, but the registry is still not authorised to access this sum either, Smith says.
In the meantime, as the registry waits for the release of funds to widen recruitment, “I’m the person that gets the phone calls from the distraught family members wanting to know what’s gone wrong … what they can do, how they can bring more people into the registry,” Smith says.
“It is just an unprecedented situation for any charity to be holding on to government money for over two decades and being unable to use that … from our perspective, it’s deeply uncomfortable,” Smith says.
“The only real uses of those funds in that 20-year period has been to fund PwC reports.”
Asked to comment, Butler told Guardian Australia “part of the problem seems to be that no single government between the Commonwealth and the states and territories has sole responsibility or sole authority to make sure that Australia keeps pace with the rest of the world and with these advances in technology”.
Butler said the Department of Health had been working closely with state and territory health departments on the implementation of the commitment for the release of the $1m.
Guardian Australia contacted all states and territories asking if they supported the release of funding to the registry.
A Victorian Department of Health spokesperson said: “Victoria is supportive of the release of funding to the Australian Bone Marrow Donor Registry and calls on all other jurisdictions to do the same.”
The New South Wales, Western Australian, Australian Capital Territory and Tasmanian health departments referred the inquiry to the commonwealth.
