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Every year, we can save 1,375 lives by making sure Australians with blood cancer get the best treatment available.

Let's set national standards for blood cancer treatment in Australia and save lives.

All you need to do is add your name to the tally.

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Blood Cancer Treatment: Set the Standard is a campaign calling for a new set of national standards, so no matter who someone is or where they live, they can get the best possible blood cancer treatment and care.

 

supporters setting the standard for blood cancer treatment

Show how much you care, Australia!

When you add your support to the campaign, we'll add another heart to the map of Australia to show the world how much you care. It may take up to an hour for your name to appear on the map.

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Proudly setting the standard for blood cancer treatment

Right now, in Australia, more than 110,000 people are living with blood cancer. This number is set to double by 2035.

Australia has a world class health system. But when it comes to treating people affected by blood cancer, we don’t have Australian-specific guidelines for diagnosis, treatment and care. We can do more.

Getting the best blood cancer treatment can be challenging. Difficulties can arise depending on where a person lives and, in some cases, whether they can afford to pay for tests and treatments. It’s not fair that your postcode or other personal circumstances could affect whether you get the best blood cancer treatment.

People need to be quickly and correctly diagnosed and work with their doctor to know exactly what sort of treatment will work best. They need the right plan and support in place to live well during and after treatment.

This is your opportunity to show decision makers, including government, that every life counts and urge them to support and fund the National Strategic Action Plan for Blood Cancer.

The National Action Plan, developed by Australia’s leading haematologists, researchers, patients, and cancer care experts, is a roadmap to save thousands of lives.

This plan outlines what we can do – with the support of our decision makers – to save lives now by developing Australian-specific treatment guidelines for all the major types of blood cancer.

Add your name to the online tally. Let’s set the standard for blood cancer treatment. Together we can save 1,375 lives by making sure people with blood cancer get the best treatment available.

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The facts about
blood cancer

More than 50 Australians every day are newly diagnosed with blood cancer such as leukaemia, lymphoma, myeloma, amyloidosis, MPN, MDS and Waldenstrom's. That’s one person every 28 minutes.

Blood cancer is the second most diagnosed cancer in Australia, and the second most common cause of cancer-related deaths in the country.

Every day this year, 15 Australians will lose their life to blood cancer or related blood disorders.

Unlike many other cancers, blood cancer can develop in anyone at any stage of life – there are no screening programs to detect it and no way to prevent it through lifestyle change.

All Australians should be able to readily access the proven best care to help them survive a blood cancer diagnosis.

Bronwyn bisley story

Bronwyn had to advocate for what, when and where she was treated

Thank goodness Bronwyn Bisley, a busy sole parent of three who lives in regional Victoria, took control early in the course of her blood cancer three years ago.

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Bronwyn had to advocate for what, when and where she was treated

Thank goodness Bronwyn Bisley, a busy sole parent of three who lives in regional Victoria, took control early in the course of her blood cancer three years ago.

She’d got sick during the 2017 Christmas holidays, and finally got in to see her GP after a three-week delay. She was to have an expensive CT scan that initially sent her down a possible breast cancer rabbit hole. Only after going to Melbourne for ‘a proper biopsy’, was she told of her diagnosis by a haematologist, via a Skype call, more than four months later, in April 2018.

By then the 48-year-old full-time teacher already knew she had Hodgkin lymphoma (HL). She’d worked that out by going online to look up her symptoms. “Exactly what you’re not supposed to do,” she said.

But Bronwyn couldn’t start her lymphoma treatment until she’d recovered from breast surgery to remove two lumps. She was scheduled to have a fortnightly regimen of chemotherapy over six months, at Shepparton, a 25-minute drive from home, but after the first few months she decided to stop treatment.

“I was really ill and couldn’t stop vomiting.”

Her side effects weren’t being managed, she found the particularly long time it took to have her four drugs administered distressing, and she hadn’t seen her haematologist “for a few months”.

Bronwyn sought other advice. Her new haematologist spent 90 minutes with her. She found out her HL was stage IIB, agreed to the addition of low-dose radiotherapy to her treatment protocol, which she’d have in Melbourne, and she’d have anti-nausea medication.

“Everything was really quick and more manageable,” said Bronwyn.

She finished her treatment in November 2018 and went back to her teaching job the following month. Now, aged 52, all is well with Bronwyn who is “fit and healthy”.

David boyle story

There was something wrong with David and it turned out to be amyloidosis

The two-year road to David’s diagnosis with amyloidosis was long and protracted, taking a toll physically and mentally.

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It took two years for David's diagnosis of amyloidosis

Having a diagnosis is fundamental. It’s the starting point for being given the correct treatment and the best chance of survival. Just ask David Boyle.

The road to his diagnosis with amyloidosis was long and protracted – physically and mentally – and it took two years.

David ran 80km each week but in mid-2016, aged 61, he had to stop halfway through his runs, which he put down to his age. In mid-2017, while walking for “miles and miles” overseas, he felt tired and had chest pain.

In December, David was to have a hernia operation, which the anaesthetist postponed due to his symptoms. It went ahead after a heart scan and passing a stress test, but his condition worsened. He lost his appetite, he lost weight, and couldn’t sleep.

He saw his GP twice and was referred to a neurologist and respiratory physician. An endoscopy and colonoscopy revealed nothing. Then, in late May 2018, David “just broke down”.

“I had something of an anxiety attack and didn’t know what the hell was going on.”

He saw a psychiatrist, was admitted to a clinic, and started medication. This was “one of the worst periods of my life”, he said, and he was no longer able to work.

Out of sheer frustration, late one Friday night in June 2018, his wife, a nurse, took him to a Melbourne hospital. “There’s something wrong with David,” she said to the doctor who admitted him because he was “a puzzle”.

Ten days and a range of tests later, it “was an enormous relief” to finally have a clear diagnosis. He had AL cardiac amyloidosis.

David was “totally shattered” when he failed the standard treatment and had to drop out of a randomised clinical trial. Then, thanks to his haematologist, David was granted compassionate access to a new targeted therapy, daratumumab (Darsalex®), which he started in December 2018.

After six weeks, he could return to work. By November 2019, there was no sign of amyloidosis “whatsoever”, and he completed the treatment in November 2020. He’s now in complete remission, isn’t on any medication, and is running again.

“It’s nothing short of a miracle,” said David.

FAQs

What is Blood Cancer Treatment: Set the Standard, and what is it trying to achieve?

The Blood Cancer Treatment: Set the Standard campaign is calling for a new set of national standards so no matter who you are or where you live you get the best possible blood cancer treatment for you.

The Leukaemia Foundation has developed the Blood Cancer Treatment: Set the Standard campaign on behalf of all Australians living with blood cancer.

The aim is to raise awareness of the 13% disparity in survival outcomes and that we can prevent 1,375 deaths from blood cancer each year, by implementing priority recommendations in the National Strategic Action Plan for Blood Cancer to set standards for diagnosis, treatment, and care.

What will happen with my details when I add my name to the tally?

When someone signs the tally at www.setthestandard.org.au, we’ll use their postcode to add their name and state to the map of Australia on the website. These personal details won’t be used for any other purpose by the Leukaemia Foundation without consent and won’t be shared with any external groups.

Why is this campaign being launched now?

This new public campaign shines a light on the issue of blood cancer, the scale and impact on everyday Australians, and the work that needs to happen to prevent people dying needlessly from a blood cancer diagnosis.

We know from our work on the National Action Plan that setting the standard for blood cancer treatment can be done now. More than a thousand lives can be saved every year just by consistently doing the things we already know work, across Australia.

This is our opportunity to show decision makers, including government, that every life counts - and to urge them to support and fund the recommendations in the National Action Plan. We need to set the standard.

Is this a fundraising campaign?

This is not a fundraising campaign. It is an ongoing awareness campaign where we are asking all members of the blood cancer community to add their name to an online tally to show their support.

Need support?

We encourage you to find out about the different ways we can help by using our simple online form.

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