Shelley Garvie had beenthrough three rounds of chemotherapy to treat acute myeloid leukaemia when she was told her best hopewasa stem cell transplant.
For that to happenshe needed to find a match from within her own family or from a registry of donors.
Also referred to as a bone marrow transplant, the procedureitself ismuch like a blood transfusion.
In preparation, Ms Garvie's own immune system needed to be shut down.
Aftermonths of living in cancer accommodation in Adelaide,away from her home and two teenage children in Loxtonin the Riverland of South Australia,Ms Garvie likened the processto facing a steep hill at the end of a marathon.
"Cancer takes everything you have and I felt like I had just done so much hard work, I had been in this really good mindset and hoping that chemo would do the job," she said.
"Being told I had to go to transplant was another level of scary."
But a donor was found and the stem cell transplant was a success.
Ms Garvie's own stem cells were replaced with those of her donor to rebuild her blood and immune systems.
"It's the most harrowing thing I've ever been through, but it saved my life," Ms Garvie said.
"I'm back home now, I'm able to be with my loved ones, to be present in their lives.
"It's the greatest gift anyone could give you."
Ms Garvie needed an allogeneic hematopoietic progenitor stem cell (HPC) transplant, during whichhealthy stem cells from a matching donor are infused into a patient's bloodstream.
It can offer the best chance of a cure for blood and bone marrow cancers and other diseases.
About 30 per cent of all patientscan find a donor within their family, with siblings usually offering the best chance of a match.
But Ms Garvie'ssister Jodie was not a match and her onlyhope was to be matched with an unrelated donor.
That process was conducted by the Australian Bone Marrow Donor Registry (ABMDR)by searching the Australian and overseasdonor registries.
Like 80 per cent of the 400 Australian patients needing a bone marrow transplant each year, Ms Garvie's donor was found overseas.
The ABMDR has been calling on the government to change the way Australia recruits and tests donors toimprove the domestic donor pool and avoid the delays, supply issues and the financial impacts of importing stem cells,especially during a pandemic.
Chief executive Lisa Smith said while Australia would always need to use overseas donors, an 80 per cent dependency was well in excess of global norms.
"Australian clinicians are selecting an overseas donor 60 per cent more often than their overseas counterparts," she said.
Thefederal government funded areview of the HPC sector in 2018and released aNational HPC Frameworkin November 2021, which identified reducing reliance on overseas donors and improved recruitment model as long-term objectives.
But without a concrete time frame progress hadstalled, Ms Smith said.
"The framework says nothing about life after June 30 next year and leaves all the old questions unanswered," she said.
People aged 18-35 can register to be a stem cell donor when they give blood through the Australian Red Cross Lifeblood program.
There are about 180,000 people registered and the procedure for donating stem cells is similar to donating plasma.
But Ms Smith said some of the restrictions on blooddid not apply to stem cell donation and called for Australia to adopt the international model of allowing donors to register online and conduct a home cheek swab for tissue testing.
This model has been piloted in Australia twice through the ABMDR's Strength to Give campaign, launched in 2018.
Those campaigns recruitedabout 12,000donors, butthe program has now closed and needs government approvalto continue.
"That would put us in a position where we start to see more Australian patients receiving donations from Australian donors and we don't have to deal with the risk, the complexity and the time delay involved with importing products from overseas, particularly during a pandemic," Ms Smithsaid.
"Obviously we need funding for this model there is a pool of funds sitting there.
"Government needs to make the decision to let us spend the money on the recruitment of donors in this way.
"We need to repair Australia's donor pool to bring it in line with the kinds of donor pools we see and depend on overseas."
The Leukaemia Foundation has supported the push for Australia to reduce its dependence on overseas stem cell donors and to better service patient needs.
"We have been monitoring this issue for a number of years and are generally concerned about the ability to serve the needs of the Australian population in a timely manner here," the foundation's Blood Cancer Partnerships general manager Tim Murphy said.
"People aren't necessarily missing out on the transplant itself, but what is happening is it takes a bit longer to happen and with the challenges around COVID the supply of stem cells became very acute.
"We are over-reliant on things that are outside of our control.
"If we had more secure supply within Australia some of those challenges wouldn't be so challenging."
Increasing the ethnic diversity of the Australian registry has been identified by the HPC review as a priority, as patients are most likely to be a match with a donor from the same ethnic background.
Professor David Ritchie, the head of theallogeneic bone marrow transplant service at the Royal Melbourne Hospital and Peter McCallum Cancer Centre, says recruitment needs to better reflect Australian multiculturalism.
"Indigenous Australians are one, but equally included are people from Pacific Islands, Melanesia, southern Mediterranean and African extractionthat are currently very significantly under-represented on donor registries internationally, let alone in Australia," he said.
"In order to be able to deliver care to people we look after here in Australia it makes sense to have the registry representative of the ethnic groups currently in Australia."
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