In just 10 short years, blood cancer diagnoses have risen 38% and regional patients face biggest barriers to survival, warns the Leukaemia Foundation.
September is Blood Cancer Awareness Month and the Leukaemia Foundation is shining a spotlight on blood cancer and sharpening its focus on turning the tables on one of Australia’s most common and deadly cancers.
According to the Foundation, the number of Australians diagnosed with a blood cancer has jumped 38% in the past decade alone. Today, more than 17,300 people are expected to be diagnosed with the disease this year and more than 5,600 Australians will lose their life, an increase of 27%.
Projections show that while 110,000 Australians are living with blood cancer today, that number will more than double to 275,000 by 2035. Blood cancer is also expected to claim the lives of 186,000 Australians in this time.
The Leukaemia Foundation’s Acting CEO Alex Struthers said that, sadly, survival could also depend on where you live. Last year’s first-of-its-kind State of the Nation: Blood Cancer in Australia report revealed a 13% gap in survival rates between patients in regional and metropolitan areas (5%), and between states and territories (8%).
“The State of the Nation report showed us that regional blood cancer patients aren’t receiving the crucial diagnostics and specialist care they need, when they need it and are more likely to face barriers in getting this care,” she said.
“Over half of all blood cancer patients living in regional and remote areas are more likely to wait over a month to see a haematologist after presenting to a GP, and a third are unsure about their treatment plan. One in four of these patients also don’t know where to go if they have more questions about their blood cancer.
“By breaking down these barriers and removing variations in access to best practice treatment and care, Australia could minimise mortality and potentially save up to 22,000 lives by 2035.
“Ending the postcode lottery faced by regional patients and turning the tables on blood cancer in this country is a priority for the Leukaemia Foundation.”
The Leukaemia Foundation’s release of the State of the Nation report last year led to Federal Minister for Health, Greg Hunt, establishing the Blood Cancer Taskforce – a unique collaboration of some of the nation’s top blood cancer experts and leaders to transform care and support and break down the barriers to a cure for all Australians living with blood cancer.
The Taskforce is now preparing to launch the National Strategic Action Plan for Blood Cancer – a cutting-edge national blueprint to save the lives of Australian’s facing blood cancer with a bold vision of zero lives lost to the disease by 2035, due for release soon.
Ms Struthers said the unique collaboration of the Blood Cancer Taskforce and the development of the National Strategic Action Plan for Blood Cancer represented a real opportunity to change the face of treatment, care and ultimately survival for Australians facing a blood cancer diagnosis.
“Australia has strong foundations in regards to access to new therapies and universal access to a national health care system, but with a significant increase in blood cancer incidence – even during a global health pandemic – a clear, evidence-based plan is now required to tackle the human and financial toll of blood cancer in our country,” she said.
“There is no one-size-fits-all solution. We have excellent health systems and services across Australia which are achieving remarkable results in improving survival rates and treatment for people living with blood cancer; however, we need to work together if we are going to meet the challenges we face and help all Australians with blood cancer not only survive, but to live the best quality of life possible.
“With less than 50% of people living with blood cancer given a written care plan, and only one in five people having access to a clinical trial, there is work to be done to improve supportive care and access to treatment for Australians living with blood cancer. It is our hope that the National Action Plan, once implemented, will pave the path to saving lives as well as bridging these gaps.”
The Blood Cancer Taskforce has delivered the National Action Plan to the Federal Government and will continue to work alongside the government to move towards the launch of the plan soon.
How does the ACT compare?
The incidence and mortality of blood cancer in the ACT is comparable to other jurisdictions across Australia. Each year, 186 people in Canberra are diagnosed with blood cancer and 70 Canberrans lose their life each year.
To put this into perspective, blood cancer equates to 11% of all cancer incidence (all cancer incidence 1,704) and 11% of all cancer mortality (all cancer mortality 618) in Canberra. More people lose their life to blood cancer in Canberra than to breast cancer and melanoma combined.
‘Blood cancer does not discriminate‘
Leukaemia Foundation general manager of blood cancer partnerships, Tim Murphy, said “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.
“There are no screening programs available for blood cancers, and there is no way to prevent blood cancer through lifestyle change,” he said.
The State of the Nation: Blood Cancer in Australia report showed that blood cancer has been underestimated and under reported. Improving processes for data collection is crucial to better understand the real scale and impact of blood cancer in Australia, and forms part of what the Blood Cancer Taskforce has been considering in their development of the National Strategic Action Plan for Blood Cancer.
According to the report, “we previously believed 35 people were diagnosed with blood cancer every day, while we now know there are 47 people being diagnosed every day. We once thought 60,000 people were living with blood cancer, but we now know 110,000 people are living with this disease in 2020”.
Sixty years ago, blood cancer was defined as a ‘disease of the blood’, but today it is known that blood cancer consists of over 150 different cancer sub-types. Just as the understanding of blood cancer has evolved, it is important to make sure that the various systems in place to capture data on blood cancer diagnosis and survival outcomes also evolve to keep pace with these rapid changes.
For example, the use of a bone marrow biopsy will automatically confirm a blood cancer diagnosis for some sub-types and trigger a report to the State Cancer Registry. However, the data from the Leukaemia Foundation’s patient survey suggests that around 20% of people (one in five) will not have a bone marrow biopsy to confirm their blood cancer diagnosis and diseases such as Chronic Myeloid Leukaemia, for example, can now be confirmed through a blood test.
Another example is in the recording of blood cancer mortality statistics. As more and more treatments improve the survivorship of blood cancer, the attribution of death may over time become less clear. For example, a death may be attributed to the ‘off-target’ or side-effects of treatment, such as cardiovascular disease or infection, but these are in fact the secondary effects of the treatments for the blood cancer.
Mr Murphy said “the more we know about blood cancer and best treatment options, the better our chances of curing and conquering this complex set of diseases, and the closer we step to realising our vision to see zero lives lost to blood cancer by 2035”.
“The Leukaemia Foundation wants to see improved understanding of the biology of blood cancers, rapid advancements in blood cancer treatments, research that discovers new diagnostics and novel therapies, and research that enables Australian blood cancer patients to access global clinical trials. That’s why we have a $50 million National Research Program, and why accelerating research is a key priority area of the Blood Cancer Taskforce in their development of Australia’s first National Strategic Action Plan for Blood Cancer, due for release soon,” he said.
For more information about the Leukaemia Foundation National Research program, including what research is underway, visit leukaemia.org.au