Updated June 09, 2017 10:59:15

Leukaemia patient Jake Cooper, 14, is desperately searching for the cure to his cancer, but his hopes of a life-saving fix now rest with strangers, not scientists.

Jake has chronic myeloid leukaemia and as his condition progresses will need a bone marrow transplant.

So why, when there are 29 million accessible donors on worldwide bone marrow registries, do so many patients, including Jake, struggle to find a match?

The answer is ethnicity, where your cultural background can turn your chance of survival into a desperate needle-in-a-haystack search.

Bone marrow transplants, sometimes called stem cell transplants, can be used to treat patients with cancers such as leukaemia, lymphoma and multiple myeloma.

But first a suitable donor needs to be found and that in itself can be a months or years-long process, one that usually starts with a patient's siblings, Red Cross bone marrow donor centre operations manager Paul Berghofer said.

"There's a one-in-four chance that [any one] sibling will be a match," he said.

While those odds aren't bad, and obviously improve if you're from a big family, they don't always deliver a match.

Then, the search broadens to the Australian Bone Marrow Donor Registry and beyond that, to a global registry, but for many patients these offer little hope.

While donors of north-west European backgrounds are over-represented on the registries, other ethnic groups are desperately under-represented.

"The chance of finding you a matched donor who is not related to you is best with people of a similar ethnic background," Mr Berghofer said.

The process wasn't drawn out but there were a bunch of general health check-ups, the initial typing and there was a discussion about the process involved.

I was told I could stop anytime up until a point of no return, I think a week or two before the transplant. You can't pull out in the last week because the [recipient] will almost certainly die.

Part of the workup is self-administering a course of an artificial hormone for five days into the flesh of my stomach. By day four or five, everything ached - like growing pains or shin splints.

The procedure itself was sitting in a chair, sticking my arms out by my side and local anaesthetic [being injected] in the crook of both elbows. To prevent damaging blood and increase the flows, they use big needles, they were ridiculous. That's why you have the anaesthetic!

Then I just lay in a chair and listened to music for four hours.

The process wasn't painful or bad, just uncomfortable and a little bit cold.

I don't regret it at all, I'd definitely do it again - it helped someone and it might be their only chance.

For Jake, whose dad is Samoan and German, and his mum Australian and British, his "incredibly rare" DNA means, despite monthly checks of the global registry, there is no bone marrow match available to tackle the "monster" in his body.

"The condition is bad enough but if it came to him [urgently] needing the transplant, I'd have to say to him, 'there's nothing I can do, we don't have a match'," his mum Renee Cooper said.

Complicating Jake's search is the fact Samoa does not have its own bone marrow registry, meaning thousands of potential matches are missed.

"It drives me crazy, there's not a day I don't think about it that someone is out there [possibly] with the cure," she said.

"The most frustrating part is I could be walking past them in a shopping centre and not even know."

Ms Cooper started Jake's Quest for a Cure on Facebook, a page she hoped would be shared to spread Jake's search around the world.

She said a lack of awareness of the registry and misinformation about the donation process were hurting patients' chances of a cure.

"There are no advertisements on bone marrow, there's no education around it in schools the way there is with organ donation," she said.

"People hear bone marrow and they think, 'oh my God, they're cutting my bones out'. People just have no idea at all."

Mr Berghofer said in 80 per cent of cases, the donation process was done as a peripheral blood stem cell collection which was not dissimilar to donating blood.

"The donor gets a needle in one arm, the blood goes through the apheresis machine and filters off blood stem cells and returns the rest of the blood back into their other arm," he said.

Pamela Bousejean, founder of Ur the Cure, an organisation striving to boost ethnic diversity on bone marrow registries, said potential donors were "slipping through our fingers everyday".

"People don't even know the bone marrow registry exists and how easy it is to donate stem cells if you're called up. You're saving a life doing something so simple," she said.

Ms Bousejean launched her campaign for a more representative registry after her own search for a donor, when she was diagnosed with Hodgkin lymphoma in 2010.

After chemotherapy and radiation treatments failed, she was told her "last chance" was to have a stem cell transplant.

"But they also told me it was going to be difficult to find me a match because of my Lebanese background," she said.

"That was really hard to hear."

For the next six months while his sister waited for a life-saving match, Ms Bousejean's brother took matters into his own hands, launching a social media campaign to find a donor.

"You're stuck in this limbo state," Ms Bousejean said.

"You know the cure to my cancer is out there in someone else's body."

In many ways, the campaign was successful raising awareness of the need for ethnic diversity on the Australian and international bone marrow registries but it didn't deliver the adult match she had been hoping for.

Instead, a "plan b" treatment in the form of a cord-blood donation gave the marketing professional her cure and she went into remission in 2012.

Now, she is on a mission to improve education programs targeted at ethnic and Indigenous communities and boost opportunities to recruit ethnically diverse bone marrow donors.

"We can make some small changes that would make a big difference," she said.

Topics: blood, diseases-and-disorders, leukaemia, perth-6000, australia

First posted June 09, 2017 06:00:36

Read more:
Bone marrow transplants: When your heritage leads to a needle-in ... - ABC Online

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