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Set The Standard

Everyone diagnosed with blood cancer should have access to a timely and accurate diagnosis, the treatment that’s best for them and a treatment roadmap to navigate their care.

Right now in Australia, this isn’t always the case.

Setting the standard for blood cancer treatment can be done now: 1,375 lives can be saved every year, just by consistently doing the things we already know work, across Australia.

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.

The Leukaemia Foundation is proud to have developed this campaign on behalf of all Australians living with blood cancer.

Add your name to the tally and let’s Set the Standard for blood cancer treatment in Australia.

“Set the Standard provides decision makers with a plan – all they need to do is say yes, so we can have 1375 Australians still here with us next year and give hope to thousands of blood cancer patients fighting this devastating disease,”

Chris Tanti, CEO, Leukaemia Foundation

Neda took ten years to finally get a blood cancer diagnosis.

Finding out she had high-risk myeloma in April 2019 ended a decade for Neda of “chasing doctors” in two countries, having endless tests, and taking medications that didn’t work.

Back when it began, in 2008, Neda said, “I had all these little things wrong with me, a bit of this and a bit of that, but nothing definitive”.

It began with swelling, bad headaches, joint and bone pain. Her GP sent her to a rheumatologist, who thought it was fibromyalgia, then a physician said she had anxiety and prescribed medication.

“Of course, I had anxiety, I knew there was something wrong with me,” said Neda, who was bedridden with pain every three to four months when she “couldn’t do anything”.

In 2016, when Neda’s husband got a job in the U.S and the family moved to Washington state, she saw a naturopath, got off the anxiety meds and lost a lot of weight, but her inflammation levels were four times higher than normal. She saw another gynaecologist, another rheumatologist, and couldn’t work due to pain and exhaustion.

The family returned to Australia in September 2018 and early the next year, after going to a pulmonologist for a persistent cough, and a rheumatologist, together they diagnosed her with lymphoma after tests and a bone marrow biopsy, and Neda was referred to a haematologist.

Then, the day she was to start lymphoma treatment, her diagnosis was changed to myeloma. Neda began myeloma treatment immediately and after having two stem cell transplants is in remission.

Let’s set the standard for blood cancer treatment and save lives.

Add your name here

Woman in a headscarf looks out the window in a Leukaemia Foundation unit

Last updated on January 29th, 2023

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.