Advocacy and policy
State of the Nation: Blood Cancers in Australia
State of The Nation: Blood Cancers in Australia is the most comprehensive and largest report of its kind in Australia, aiming to identify the challenges and opportunities that influence survival and quality of life for people with blood cancer.
First released in 2019, the report is informed by the experiences of thousands of Australians affected by blood cancer. Now, the latest report – State of the Nation: Blood Cancers in Australia 2023 – draws on the lived experiences of over 4,600 Australians living with blood cancer, and reveals that while gains are being made, lives are still unnecessarily lost due to inconsistencies in treatment.
Key findings from the 2023 report
System reform is still needed
The inconsistencies in Australia’s healthcare system directly impact people with blood cancer. Continued focus on ensuring national standards are documented and implemented is essential to ensure people are diagnosed quickly and have equal access to skilled healthcare professionals who deliver best practice care.
- Around 13% of people with blood cancer wait more than two months from their first appointment to obtain a referral to a specialist.
- More than a third of people with blood cancer diagnosed between 2018 and 2022 waited more than a month to see a haematologist.
Bridging the health divide
Getting the best blood cancer treatment can be challenging, and difficulties can unfairly arise depending on where a person lives and, in some cases, whether they can afford to pay for tests and treatments. First Nations people, those of culturally and linguistically diverse backgrounds, and regional and remote patients face additional challenges due to location, language and cultural factors.
- New modelling shows 38,200 lives could be saved from blood cancer between now and 2035 if everyone across Australia had equal access to best-practice treatment and care.
- About 18 Australians still lose their life to blood cancer each day, but new modelling shows five people could be saved every day if only everyone received what is already considered best-practice treatment.
- The number of Australians dying from blood cancer could be reduced by 29% in 2023 by ending the postcode lottery of treatment for disadvantaged Australians.
Accessing supportive care
The vast majority of Australians face significant emotional challenges after their blood cancer diagnosis, and every year thousands are left in the dark about treatment and available support.
- 70% of people with blood cancer face emotional challenges after a diagnosis.
- One in four blood cancer treatment plans don’t include supportive care.
- Almost 40% of people with blood cancer have a lot of questions or feel completely uncertain about their diagnosis.
Facing the financial burden
Treatment for blood cancer is often long and complex and can result in people and their carers needing to stop working for a long time – or altogether. Some types of blood cancer remain among the most expensive cancers to treat. Research published in 2022 found myeloma is the most expensive cancer to treat, and leukaemia the third, due to high hospitalisation and pharmaceutical costs.
- A third of people with blood cancer face $10,000 in out-of-pocket expenses.
- Almost one in three people with blood cancer haven’t been able to return to work since their diagnosis.
- By 2035, blood cancer will cost the economy $71.9 billion each year.
Watch a recap of the 2023 launch event
Katrina’s story
Katrina Richards endured five years of misdiagnoses and was told she had different kinds of skin issues. What it turned out to be was Sezary syndrome – a rare and aggressive subtype of cutaneous T-cell lymphoma which affects the skin. By that stage, the cancer was stage 4.
Two stem cell transplants and a $170,000 treatment later (which she thankfully received financial assistance for) Katrina has been in remission for five years.
When you’re diagnosed, your life stops,” says Katrina. “When I finally came home, it was like walking into a stranger’s home – you’ve been gone for so long, and everyone else’s life has continued around you. It took me a month to feel like I was home.
“I had depression. Even though you’ve fought all that time, you get tired mentally, too. But throughout your fight, you know you have no option but to fight and survive
“You have to tell your story to because you need other people to know that if there’s something not right, you have to keep asking and keep advocating for yourself until you get the right diagnosis and the right treatment for you.
Access to best practice needed to reduce blood cancer mortality
Improving access to best quality treatment and care can substantially improve survival outcomes and quality of life. This is the top priority action blood cancer patients say will empower them. This was highlighted by co-chair of the Blood Cancer Taskforce, Professor John Seymour at the State of the Nation report launch in Melbourne.
Referral to a haematologist takes 2+ months for 13% of blood cancer patients
A timely and accurate blood cancer diagnosis is critical to clinical best practice and the State of the Nation – Blood Cancers in Australia Report 2023 revealed most people with blood cancer were immediately referred to a haematologist.
However, according to the report, based on a survey of 4,600 people, 25% of them were referred to two or more specialists before being referred to a haematologist – the specialist they needed.
Addressing blood cancer challenges and improving patient outcomes
Significant progress has been made in the quest to reduce blood cancer mortality and improve quality of life for the 135,000 Australians living with this group of rare diseases.
Blood cancers, combined as a group, are the third most commonly diagnosed type of cancer in Australia and the second most deadly.
An update on 2019’s findings
The first State of the Nation: Blood Cancer in Australia 2019 report helped catalyse new strategies and life-saving reforms to the health system, to improve outcomes for people living with blood cancer. The Australian Government acknowledged the need for action in improving access to treatment, as well as the need for system reform. It called for governments and the community to work together to achieve an ambitious goal of zero lives lost from blood cancer by 2035.
With the support of Government and the wider blood cancer community, important progress has been made over the last four years. However, there is more work ahead of us if we’re to save more lives from a cancer that cannot be prevented or screened for.
Key outcomes from 2019
- The report was a driver for a key partnership with the Australian Government to establish the Blood Cancer Taskforce – a group of leading experts tasked with delivering the National Strategic Action Plan for Blood Cancer to help shape government and health system policies and practices.
- In 2022, the Blood Cancer Taskforce supported by the Leukaemia Foundation began the vitally important work of preparing national standard of treatment and care. The first five new Optimal Care Pathways were released in mid 2022. Another six are due for release in 2023.
- The Leukaemia Foundation is funding the development of a Research Roadmap, which will provide a framework for investment by government and the community into areas of high-impact blood cancer research.
- The Leukaemia Foundation is funding an epidemiological study of blood cancer in Aboriginal and Torres Strait Islander communities.
More about the State of the Nation report
The 2019 and 2023 reports were commissioned by the Leukaemia Foundation and produced by leading public policy firm, Insight Economics. The 2023 report was published in February 2023.
Contact us
For more information about the State of the Nation: Blood Cancers in Australia, please contact us on 1800 620 420 or via email.