Advocacy and policy

Set the Standard

A campaign that set national standards for blood cancer treatment and created lasting change.

What was achieved

The “Set the Standard” campaign, the Leukaemia Foundation’s largest national advocacy effort to date, successfully rallied more than 5,000 supporters to demand consistent, high-quality blood cancer treatment across Australia.

The campaign helped establish national standards of care, so that where you live no longer determines the quality of treatment you receive.

Built on the National Strategic Action Plan for Blood Cancer, the campaign gave government and health decision-makers a clear roadmap to reduce inequities, improve survival, and save lives.

The journey continues

Putting National Standards into Practice
We are working to ensure the standards are applied across every state and territory so that diagnosis, treatment, and care are consistent and accessible nationwide.

Zero Lives Lost by 2035
Our bold vision is that no Australian should die from blood cancer by 2035. To reach it, we are driving progress in equity, innovation, access, and research.

Amplified Support Through Future Campaigns
Campaigns like the World’s Greatest Shave remain vital as blood cancer diagnoses rise. Every dollar raised helps us deliver services, fund research, and push for system-wide change.

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.

Blood Cancers A-Z

A

AA secondary amyloidosis

Acute lymphoblastic leukaemia ALL

Acute myeloid leukaemia AML

Acute myelomonocytic leukaemia AMML

Acute promyelocytic leukaemia APML

Afib mutated fibrinogen alpha chain amyloidosis

AL systemic amyloidosis

Amyloidosis

Aplastic anaemia AA

ATTR familial amyloidotic polyneuropathy

ATTR wild type senile amyloidosis

B

Biphenotypic leukaemia

Bisphosphonates myeloma

C

Chronic lymphocytic leukaemia CLL

Chronic myeloid leukaemia CML

H

Hairy cell leukaemia

Hodgkin lymphoma

I

IgA myeloma

IgG myeloma

J

Juvenile myelomonocytic leukaemia JMML

L

Langerhans Cell Histiocytosis LCH

Leukaemia

Light chain myeloma

Lymphocyte depleted HL

Lymphocyte rich HL

Lymphoma

M

MDS with biallelic TP53 inactivation MDS-biTP53

MDS with fibrosis

MDS with hypoplastic MDS-h

MDS with increased blasts MDS-IB1

MDS with increased blasts MDS-IB2

MDS with low blasts MDS-LB

MDS with low blasts and isolated 5q deletion MDS-5q

MDS with low blasts and SF3B1 mutation MDS-SF3B1

Mixed cellularity HL

Monoclonal gammopathy of unknown significance MGUS

MPN Chronic eosinophilic leukaemia CEL

MPN Chronic myelomonocytic leukaemia CMML

MPN Chronic neutrophilic leukaemia CNL

MPN Essential thrombocythaemia ET

MPN Polycythaemia Rubra vera PV

MPN Primary myelofibrosis MF

MPN Systemic mastocytosis SM

Multiple myeloma

Myelodysplasia Myelodysplastic neoplasms MDS

Myeloma

Myeloid sarcoma localised leukaemia

Myeloproliferative neoplasms MPN

N

NHL Adult T-Cell leukaemic ATLL

NHL Anaplastic large cell ALCL

NHL Burkitt’s

NHL Cutaneous T-Cell

NHL Diffuse large B-cell DLBCL

NHL Double hit DHL

NHL Follicular

NHL Lymphoplasmacytic Waldenstrom’s macroglobulinaemia WM

NHL MALT

NHL Mantle cell

NHL Marginal zone

NHL Peripheral T-Cell

NHL Primary cutaneous B-cell

NHL Primary mediastinal B-cell PMBCL

NHL Small lymphocytic SLL

NHL Subcutaneous panniculitis-like T-Cell

NHL T-Lymphoblastic

NHL Waldenstroms macroglobulinaemia

Non-Hodgkin lymphoma

Nodular lymphocyte predominant HL

Nodular sclerosing HL

O

Osteosclerotic myeloma

P

Paroxysmal nocturnal haemoglobinuria

Plasmacytoma localised myeloma

POEMS syndrome

R

Richter’s syndrome leukaemia

S

Smouldering indolent myeloma

Solitary plasmacytoma myeloma

Systemic mastocytosis