A Victorian man with leukaemia is urging Australians to consider becoming stem cell donors as he anxiously waits for a stem cell transplant to arrive from a donor in the United Kingdom.
Steve Guley, 45, from Bendigo was diagnosed with acute myeloid leukaemia (AML) in October last year.
"I just had some aches and pains in my hands. I went to the doctor thinking maybe this is arthritis," he said.
Since then, he's done four rounds of chemotherapy and is now waiting to have a stem cell transplant next month.
"My siblings were tested and weren't compatible. There was only [a] 25 per cent chance they were a match as a donor," Mr Guley said.
Mr Guley said the Australian Bone Marrow Donor Registry (ABMDR) then cast the net wider in search of a match.
"They searched Australia but couldn't find a suitable donor so had to go international," he said.
The ABMDR says about 85 per cent of Australians living with blood cancer rely on overseas stem cell donors due to a severe shortage.
After learning this firsthand, Mr Guley is calling for people to consider joining the registry.
"I would encourage everyone I know who are between the ages of 18 and 35 to go on that registry," he said.
"I was talking to a friend the other day and he said, 'I'm an organ donor, how do I even get on the registry?'
"You don't hear much about it, there's very little advertisement or promotion."
For Mr Guley and thousands of others living with blood cancer and immune or blood disorders, a stem cell transplant can be lifesaving.
"If I don't have the transplant, it will return," he said.
"It's an anxious wait, but it's a necessity."
The bone marrow 'myth'
Stem cells live in our bone marrow, explains Lisa Smith, the chief executive of ABMDR.
She says the idea that someone has to "dig" into the bone marrow to access these stem cells is a myth.
"The process used to be a needle in the hip to extract the stem cells from the marrow," Ms Smith said.
"Now that is very rare — less than 10 per cent of the time."
The majority of transplants involve a course of injections to get the stem cells to multiply and "spill" into the bloodstream, Ms Smith says.
"Then the donor has their blood drawn and a machine filters the blood to take out the stem cells," she said.
"And another needle feeds their blood back into their circulatory system."
Ms Smith says the process is similar to kidney dialysis or donating platelets.
Australia more than a decade behind
Ms Smith says the shortage of donors is due to red tape, a lack of awareness and government inaction.
"Relative to the size of our population, we have one of the smallest donor pools of any comparable nation," she said.
Over the last three decades, Ms Smith says stem cell donations have declined significantly in Australia.
"We support around 400 Australians having a transplant from an unrelated donor — about 82 per cent of those last year were from donors overseas," she said.
"Thirty years ago that was a 50-50 split."
Ms Smith says Australia is 15 years behind in terms of funding for at-home swab kits to recruit stem cell donors.
"The rest of the world moved to this cheek-swab method of recruiting donors around 10-15 years ago," she said.
"We've got a long way to catch up."
Donors needed as diagnoses increase
Every year, over 19,000 Australians are diagnosed with a blood cancer.
Katherine Huntly of the Leukaemia Foundation says this number is expected to double by 2035 and reiterated the need for Australians to register to donate stem cells.
"For around 600 Australians with blood cancer, they will need donated stem cells to save their life," Ms Huntly said.
Ms Smith said more Australian donors from a diverse range of cultural backgrounds could improve patient outcomes.
"You have a much better chance of recovery if you find a donor that is from a similar ancestry," she said.
"Australia is multicultural and we need donors from South East Asian backgrounds and First Nations backgrounds.
"Australia is also very far away from the rest of the world, so for patients receiving donations, there's the added stress and worry when you know that your life-saving cells are coming from the other side of the planet."
The ABMDR has welcomed the federal Health Minister Mark Butler's recent commitment to reverse the decline in registry participation by encouraging the widespread use of cheek-swab testing.
Mr Butler wants to see the local pool of potential donors expanded.
"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, including on things like cheek swabs and age limits on donors," he said.
"We know that cheek swabs are an effective and very economical way of bringing additional donors to the registry and giving people a better chance at life. Used across the world, this is not a system that has yet been introduced in Australia.
Health Ministers have approved the immediate release of $1 million from the Cord Blood Export Revenue (CBER) fund to increase bone marrow donation recruitment, through both blood testing and cheek swabbing.
People who give blood can register to donate stem cells at their Australian Red Cross Lifeblood donor centre, or order an at-home cheek swab through the ABMDR website.
