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. Each year, 6,570 Australians die from blood cancer – 1,3751 of them unnecessarily, because they don’t get the best treatment available.
This issue of preventable deaths is now being addressed along with other priority actions around national standards of care and consistent access to clinical best practice.
In 2019, the Leukaemia Foundation’s first State of the Nation: Blood Cancers in Australia Report helped catalyse new strategies and life-saving reforms to the health system. It brought together all levels of government and the blood cancer community around a long-term plan to improve outcomes for people living with blood cancer.
Then, with the support of the federal Department of Health and additional funding from the Leukaemia Foundation (the Blood Cancer Taskforce secretariat), the Taskforce spearheaded the development of a National Strategic Action Plan for Blood Cancer (NAP).
Preventing almost a third of blood cancer deaths
Setting national standards of care was the immediate priority of the Taskforce, with the overarching goal being that no lives are lost to blood cancer by 2035.
If all blood cancer patients had timely and equitable access to best practice across all stages of their treatment journey, and this was available consistently across Australia, an estimated 29% of blood cancer deaths would potentially be prevented.
The NAP’s 21 recommendations focus on the clinical standard setting to address the needs of all patients, especially those in high-risk groups, and the Taskforce is committed to ensuring the actions in the NAP are implemented.
Optimal Care Pathways
Ensuring consistent access to treatment and care depends on the definition of clinical best practice.
Optimal Care Pathways (OCPs) set out national standards for blood cancer treatment and best practice care from diagnosis, through treatment, survivorship, and end‐of‐life care for both patients and clinicians.
These evidence‐based recommendations are important to help clinicians understand the importance of providing information and supportive care services. Together with clinical guidelines, OCPs can minimise variation, are the foundation for achieving best care practice, and reduce disparities in survival outcomes.
With assistance from the Federal government, the Blood Cancer Taskforce has guided the development of six new OCPs – for myeloma, chronic myeloid leukaemia (CML), chronic lymphocytic leukaemia (CLL), low grade lymphomas, acute leukaemia in children, adolescents, and young adults, and myelodysplastic syndrome (MDS).
Development of the new OCPs was by Australia’s leading blood cancer specialists together with patient representatives, led jointly by the Australasian Leukaemia & Lymphoma Group (ALLG) and the Haematology Society of Australia and New Zealand (HSANZ), with support from the Leukaemia Foundation. The OCPs have been approved and endorsed by the federal, state and territory health departments.
A further grant from the Federal government has enabled the Taskforce to develop another five OCPs, which are nearing completion and will be delivered in mid-2023. They are for Waldenström’s macroglobulinaemia (WM), acute lymphoblastic leukaemia (ALL), AL amyloidosis, cutaneous T-cell lymphoma (CTCL), and myeloproliferative neoplasms (MPN).
As part of the development of the OCPs, companion guides to best-practice cancer care were developed specifically for patients and translated into the eight most commonly spoken languages in Australia (simplified Mandarin Chinese, traditional Mandarin Chinese, Vietnamese, Arabic, Italian, Greek, Tagalog, and Hindi).
Optimal Care Pathways and clinical guidelines are interdependent and to be effective should be fully integrated into clinical practice. Clinical guidelines bring together the best available evidence to underpin scientifically valid recommendations for the diagnosis and treatment of patients, and are a key mechanism to improve quality and safety in care and reduce variation in survival outcomes.
According to multiple studies, adherence to clinical best practice improves survival outcomes and patient quality of life. Currently, the only Australian national blood cancer guideline is for myeloma, which was developed by the Myeloma Australia Scientific Advisory Group. This means Australia is out of sync with other developed countries in the development and use of clinical guidelines, so there is a critical need to develop them for all the blood cancer subtypes.
The latest State of the Nation: Blood Cancers in Australia Report 2023 was released in February. More than 4,600 people living with blood cancer responded to the consumer survey – a 40% increase on the previous survey, which highlights the continued importance of this policy agenda to Australian communities.
This update of incidence and mortality projections, based on latest available cancer registry data, along with an update of key stakeholder perspectives regarding the main priorities for action, provided a platform and further evidence in support of the case for this funding.
Blood Cancer Research Roadmap
Consistent best practice treatment and care can increase the survival rate of people with blood cancer by 29%, but this won’t – on its own – address blood cancer mortality, especially for blood cancers with the poorest prognoses.
While public health interventions that focus on early screening and detection have improved survival outcomes for breast, bowel and lung cancers, these interventions aren’t applicable to blood cancers – because these diseases can’t be prevented or screened, based on current knowledge. Therefore, research is required to achieve significant improvements in survival, based on a greater understanding of disease biology, and the development of curative therapies for the many blood cancer subtypes.
In the last 15 years, major blood cancer advances have resulted from investment in research. Improved paediatric therapies have cured many children, tyrosine kinase inhibitor therapies mean people with chronic myeloid leukaemia (CML) can look forward to a normal lifespan, and novel cellular therapies offer the promise of curative treatments for low‐survival subtypes.
New investment in genomics, microbiota, diagnostics, immunotherapies, targeted small molecule therapies, and cellular therapies have the potential to further address the unmet needs of blood cancer subtypes that currently have no cure and where five‐year survival is poor. Therefore, increased and ongoing investment in discovery and new treatment development is paramount.
Australian researchers are internationally renowned and their medical research institutions are recognised as world‐class centres of excellence that play a significant role in global collaboration in the quest for blood cancer cures. Examples include the Centre of Excellence in CML, the development of venetoclax, and the Zero Childhood Cancer program.
Actions to accelerate research breakthroughs, by increasing research and funding through a Blood Cancer Research Program are among the most critical aspects of the National Action Plan. This involves developing a Blood Cancer Research Roadmap and seeking and leveraging funding for research priorities to deliver the greatest impact. Also, the use of real-world data for blood cancer patients through blood cancer registries and linkages to existing and international datasets.
The Research Roadmap is a 10-year plan to develop an ecosystem that accelerates breakthrough blood cancer research in Australia covering blood cancer biology, genomics, microbiota, epidemiology, diagnostics, immunotherapies, and targeted or cellular therapies.
First Nations Epidemiology Study
The National Strategic Action Plan for Blood Cancer identified under‐diagnosis and under‐reporting of blood cancers across Australia, which is likely to be exacerbated for Aboriginal and Torres Strait Islander peoples.
The absence of consistent, reliable data on incidence and outcomes across all blood cancer sub‐types in ATSI communities are challenges to ensuring high‐quality, equitable care, and informing policy development. The data available, which is largely limited to lymphoma, suggests First Nations people experience poorer health outcomes for blood cancer than non-Indigenous Australians due to multiple intersecting factors.
Among a series of recommendations to address these challenges, the NAP has commissioned an epidemiological study of blood cancer in Aboriginal and Torres Strait Islander communities in consultation with hospitals, state cancer registries, and the Australian Institute of Health and Welfare. The aim of the study is to better understand limitations, improve data collection and statistics on blood cancers, and enable culturally sensitive care that improves primary health attendance and hospitalisation rates.
Blood cancer remains a priority
While important progress has been achieved in establishing the NAP and implementing the prioritised actions, even against the backdrop of the COVID-19 pandemic, there remains important work to be done to realise the Blood Cancer Taskforce’s shared goal of zero lives lost to blood cancer by 2035’.
1 Analysis of state cancer registry data in the Leukaemia Foundation’s State of the National: Blood Cancer in Australia report (2019) shows 13% of blood cancer deaths could be prevented through the consistent application of currently available best practice treatment and care (22,000 deaths between 2019-2035) by utilising what has been proven to work and is already funded in Australia more effectively across all jurisdictions. Based on latest available cancer registry data, up to 29% of projected blood cancer mortality could be prevented by achieving best practice and equitable access. This means that between 2023 and 2035, more than 38,200 deaths – an average of around 2,900 deaths per year – could be prevented.