UR The Cure claims stem cell registry victory

A Torquay cancer survivor who has lobbied governments for years is thrilled after the Health Minister revealed the next steps in the fight to improve access to stem cell transplants. Here’s what’s happening.

UR the Cure is a charity founded by Torquay's Pamela Bousejean.

Torquay cancer survivor Pamela Bousejean, who has spent years campaigning for Australia to adopt cheek swab testing to make it easier for people to join the stem cell donor registry, has secured a major win.

Federal Health Minister Mark Butler has revealed he is writing to the chair of the Health Ministers’ Meeting — which includes his state and territory counterparts — to seek their agreement to cut jurisdictional bureaucratic red tape, and do “everything we can to clear the way”.

Ms Bousejean, 37, was diagnosed with Hodgkin lymphoma in 2010 and her life was saved with stem cells donated from a baby’s umbilical cord in 2012.

She started charity UR The Cure, a partner of the Australian Bone Marrow Donor Registry (ABMDR), in 2015.

Federal Health Minister Mark Butler. Picture: NCA NewsWire / Gary Ramage

The charity says Australia’s stem cell donor pool has been shrinking and the government needs to fund cheek swab testing, which is used overseas, to make it easier for people to join and save more lives.

People currently join the blood stem cell donor registry through a blood donation.

Mr Butler told the Addy: “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,” he said.

Mr Butler said bone marrow donations were crucial for the lifesaving treatments for people fighting leukaemia and a range of other blood cancers.

“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,” he said.

“It isn’t clear to me as to why Australia has moved so slowly over the past decade.

“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.

“Frankly, this is just not good enough.

“It is currently denying patients in Australia the best chance to access this lifesaving technology.”

Ms Bousejean said she felt “huge relief”.

“(I’m) still in awe of how long it took – I officially started advocating for the change in 2017,” she said.

“But it’s a very positive step forward and it’s thanks to many different people involved over many years.

“It’s not over yet and we now need the states on board, so I’m still advocating and working in the background to make sure everyone is in support of the change.”

She said cheek swabs must be offered in a flexible way to target the right demographics.

“Then we can finally get on with the job, properly recruit stem cell donors and find more matches for patients and save more lives,” she said.

It’s understood state governments fund stem cell collection through grants or contracts with organisations.

A Victorian government spokesperson said: “We are continually working on ways to support the future of stem cell donation in Victoria, and a cheek swab testing program is one option being considered in this process.”

In 2020-2021 the government co-funded the Australian Bone Marrow Donor Registry to recruit an additional 6000 donors through the Strength to Give pilot project, with the results currently being assessed.

Originally published as UR The Cure claims stem cell registry victory