A first-of-its-kind nationwide report commissioned by the Leukaemia Foundation reveals the true size, scale and impact of blood cancer and the lived experiences of people living with blood cancer in Australia today.

The Leukaemia Foundation has today marked the start of Blood Cancer Awareness Month by releasing the State of the Nation: Blood Cancer in Australia report[1], which identifies the challenges and opportunities influencing survival and quality of life for Australians living with blood cancer.

The Leukaemia Foundation said the comprehensive and evidence-based report shows that blood cancer has been underestimated and under reported. It identifies that blood cancer is now more significant and prevalent than ever before and that diagnosis rates are on the rise across the country.

Due to the urgency of the report’s findings, the Federal Minister for Health, The Hon. Greg Hunt MP has announced the development of a national Blood Cancer Taskforce and charged the Leukaemia Foundation with delivering Australia’s first National Strategic Action Plan for Blood Cancer.

The State of the Nation report reveals that by 2035, 275,000 Australians will be living with blood cancer – more than double the number of people battling these diseases today. It also shows that up to 186,000 people may die as a result of blood cancer over the next 16 years.

“Right now, every day, 41 Australian children, adults, parents and grandparents will be told they have blood cancer and unfortunately 20 people will lose their life to blood cancer, making these cancers some of the most common and deadly in the country,” a Leukaemia Foundation spokesperson said.

“This report shows that by 2035 these figures will more than double, with close to 100 people a day set to be diagnosed and more than 40 people expected to die every day.”

The spokesperson said the report also found the cost to the health system of treating and caring for people with blood cancer is expected to increase to over $10.9 billion in 2035 – up from $3.4 billion annually today. The total cost to the Australian economy is also expected to reach $71.9 billion a year by 2035 – more than triple today’s annual estimated cost of $22.9 billion.

“This report outlines an agenda for change, which will, in turn, drive down both the personal and economic toll blood cancer is set to have on our country. That is why we need all Australians to unite in recognising blood cancer as a significant issue that will impact all of us,” they said.

“An unprecedented 3200 people living with blood cancer were surveyed in the development of this patient-centred and people-focused report, and it is their lived experiences that are fueling our push for action. We want all Australians living with blood cancer, their families and carers to know – we see you, we hear you, and we’re here for you.”

The report identifies four key priorities to tackle blood cancer: empowering patients, ensuring equity of access, accelerating research and catalysing health service reform.

“It is time for a national collaborative approach to address these priorities and save the lives of our fellow Australians.”

The Blood Cancer Taskforce will unite Australia’s leading hematologists, researchers, patients and members of the blood cancer ecosystem for the first time to work with the Leukaemia Foundation to develop the National Strategic Action Plan, which will provide the blueprint to help tackle the key issues facing the blood cancer community today and into the future.

The Leukaemia Foundation spokesperson said the formation of the Taskforce and development of the National Strategic Action Plan together mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come.

“Advances in treatment and care over the past 40 years have transformed the way Australians live with a blood cancer, however the path to conquering blood cancer is long and requires improved access for all Australians to the right information, the best treatments and services, and the latest treatments, tests and diagnostic tools, to help people with blood cancer not only to survive – but also to live well,” they said.

“The Leukaemia Foundation and the whole blood cancer community are committed to partnering with the Federal Government in tackling the challenges of blood cancer.”

The spokesperson said the Federal Government’s action also bolstered the bold new goal set by the Leukaemia Foundation to create real change for people living with blood cancer: zero lives lost to blood cancer by 2035.

“For the past 40 years, the Leukaemia Foundation has supported and advocated for people living with blood cancer in Australia. Now we are looking forward to leading a new era of change for the Australian blood cancer community by partnering with industry, government, medical professionals and everyday Australians to realise the goal of zero lives lost to blood cancer by 2035,” they said.

Report methodology: The State of the Nation: Blood Cancer in Australia report was developed by independent research firm Insight Economics in consultation with the Leukaemia Foundation. Development involved consultation with more than 65 leading experts from across the blood cancer ecosystem including clinicians and haemaologists, research institutes, government decision-makers, blood cancer NGOs and industry. The report draws on data from the Australian Institute of Health and Welfare (AIHW), Australian Bureau of Statistics (ABS) and state cancer registries along with survey data from more than 3200 people living with blood cancer, providing a statistically significant snapshot of the experiences of people living with a blood cancer in Australia today.

 

KEY FINDINGS: STATE OF THE NATION – BLOOD CANCER IN AUSTRALIA REPORT

1. Blood cancer Incidence, mortality, prevalence statistics

	PREVIOUSLY KNOWN	WHAT WE NOW KNOW	2035
Blood cancer incidence	35 people diagnosed every day	41 people diagnosed every day (1 person every 36 minutes, or 15,000 a year)	Close to 100 people diagnosed every day (36,000 a year)
Blood cancer mortality	12 people losing their life every day	20 people losing their life every day (7,500 per year)	42 people losing their life every day to blood cancer as the primary cause (more than 15,000 per year)
Blood cancer prevalence	60,000 people living with blood cancer	110,000 people living with blood cancer	275,000 people living with blood cancer

 

2. Blood cancer in Australia:

• Blood cancer does not discriminate. It can develop in anyone, can occur at any age and at any stage of life across all states and territories, from children to adolescents and young adults to working adults with families and older Australians.
• When combined, blood cancers are among the most frequently diagnosed cancers in the Australian community, and the most significant cause of non-preventable cancer death.
• Blood cancer has no preventative educational campaigns or screening programs for prevention – unlike other cancers (such as lung, melanoma and colorectal).
• Compared to the high incidence and mortality cancers of breast, lung and colorectal cancers, blood cancer is the second deadliest cancer in Australia following lung cancer
• Compared to the high incidence and mortality cancers of breast, lung and colorectal cancers, blood cancer is the third most commonly diagnosed cancer in Australia, following breast (18,235) and colorectal cancer (17,004)
• Blood cancer is the most commonly diagnosed children’s cancer. Approximately 400 children are currently diagnosed with blood cancer each year. The major sub-types for children include ALL, AML, Non-Hodgkin lymphoma and Hodgkin lymphoma.
• Approximately 500 adolescents and young adults (persons aged 15-25 years old) are expected to be diagnosed with the same mix of sub-types as in children.
• More than 5,200 adults between the ages of 25 and 65 will be diagnosed, and approximately half of these diagnoses will be for some form of Non-Hodgkin lymphoma.

3. Blood cancer in Australia by 2035:

• More than 186,000 Australians will lose their life to blood cancer between now and 2035, making blood cancer a leading cause of cancer death in this country
• The expected annual cost to the health system to treat and care for people with a blood cancer will be $10.9 billion in 2035, compared to $3.4 billion in 2019
• The expected total annual cost of blood cancer to the Australian economy will be $71.9 billion, compared with $22.9 billion in 2019

4. Key insights affecting people living with blood cancer in Australia:

• The report found there were inconsistencies in data, and that blood cancer has been under-reported. Therefore, the true size, scale and impact of blood cancer in Australia has been underestimated, potentially leading to inconsistency and inadequacy of funding and service delivery.
• Less than 40% of Australians living with blood cancer today receive a written care plan or are referred to patient support services
• Nearly 40% of people living with a blood cancer wished that access and referrals to patient support services had been more frequently discussed during their diagnosis and treatment planning.
• Around 30% of people are referred to one or more other specialists before a haematologist, and nearly one in 10 people are referred to at least two specialists before receiving a haematologist referral.
• Less than 30% of Australians living with blood cancer today have access to genetic and genomic testing to inform their diagnosis and treatment planning
• Less than 20% of Australians living with blood cancer today have participated in a clinical trial, and only 1 in 5 who want to enroll in a clinical trial have access to one
• A 13% improvement in survival outcomes between states and metro and regional areas could be achieved by 2035. This includes a 5% difference in survival outcomes achievable by removing treatment inconsistencies between regional and metro areas, and an 8% difference in survival outcomes achievable by ensuring consistent use of evidence-based practice and treatment nationally across all states and territories. Achieving these goals could save more than 22,000 lives between now until 2035 – and save more than 350,000 expected years of life that would otherwise be lost.
• Currently, blood cancers are a notifiable disease in other countries such as the US, however not in Australia. The report recommended that making blood cancers a notifiable disease in Australia could address gaps in reporting inconsistencies. This could help patients better access information and treatments and also help to better identify them for potential participation in clinical trials. Recognition as a notifiable disease would also help provide more accurate incident and mortality reporting to state cancer registries, triggering action by health services, and potentially improving service funding and delivery.
• Medical professionals consulted during the report’s development noted that consistent implementation of current best practice available globally, not just in Australia today, could reduce the number of deaths by potentially up to one third.