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.

Patients understand that clinical best practice care begins with an accurate and timely diagnosis. This was revealed in the latest Survey of People Living with Blood Cancer which helped inform the State of the Nation: Blood Cancers in Australia Report 2023.

Improved access and best practice were highlighted by co-chair of the Blood Cancer Taskforce, Professor John Seymour at the State of the Nation report launch in Melbourne.

“We can prevent people dying unnecessarily from blood cancers if we consistently, and in a timely fashion, deliver what we currently know is best practice,” explained Prof. Seymour who heads the Department of Haematology at the Royal Melbourne Hospital and the Peter MacCallum Cancer Centre.

“Best practice involves a number of steps. The first is prompt diagnosis. The second is accurate diagnosis, and that includes detailed molecular characterisation, and then delivery, consistently, to all members of our community of internationally determined best practice care.”

At the State of the Nation launch, Leukaemia Foundation ambassador, Lyndey Milan OAM, emphasised that “we’ve got to make sure that everybody has equal access to good health care.” Her son, Blair Milan, who was initially misdiagnosed, died in April 2011 – three days after his correct diagnosis with acute myeloid leukaemia (AML).

Fellow Leukaemia Foundation ambassador, Barry Du Bois, who lives with myeloma, made the point that where you live shouldn’t have any influence on the treatment protocols and care blood cancer patients get.

“People in regional cities and country towns deserve the same care that people in the city have,” he said. Barry finds it “unbelievable” that Australia doesn’t have the world’s best standard when it comes to blood cancer. “That’s just not right. We all deserve the best there is and Australia needs to come in line with world’s best practice for blood cancer.”

 

Best care and equal access will save thousands of lives

Getting the best blood cancer treatment can be challenging. People need to be diagnosed quickly and correctly. They need access to the right information, in a format that they can understand, and to know exactly what treatment plan will work best for them, and they need support in place to live well during and after treatment.

Best available care is known and can save lives, yet every year, 1,375¹ Australians die unnecessarily from blood cancer because they don’t get the best treatment available. Simply by implementing known best practice more consistently across Australia, nearly a third of preventable blood cancer deaths could be saved by removing variations in survival outcomes nationally and between metropolitan and regional (including remote) areas.

While there have been significant improvements in survival over the past two decades, the standard of care is extremely varied across the nation. Based on latest available cancer registry data for survival outcomes by age, sex, region, and blood cancer sub-type, it is estimated that blood cancer mortality could be reduced by almost 30% if best practice outcomes are achieved nationally. This translates to more than 38,200 preventable deaths from 2023 to 2035 – around 2,900 lives saved each year.

If all Australians received the same treatment and care eight of the 18 people who die each day of blood cancer would survive. That’s why it’s critical that where a person lives – their postcode – doesn’t affect or influence their cancer journey.

State cancer registry data show the survival outcomes at 1-year and 5-years for people living in regional and remote areas are poorer than for metropolitan-based patients. Removing the metro-regional divide alone would reduce expected mortality by around 5% – that’s more than 7,000 deaths that potentially could be avoided over the 2023-2035 horizon.

Numerous causes of disparity contribute to reduced access, including a lack of specialists (haematologists/oncologists) and specialist diagnostic and blood cancer subtype services, barriers to travel, a lack of supportive care, and barriers to participating in clinical trials. Members of the blood cancer community and patients also have identified the need for improved support through models of care (such as self-administration of medicines) and assisted travel schemes.

These comments from the State of the Nation report provide some perspectives to access for regional and remote patients:

“I received the best care possible by agreeing to be cared for by a specialist haematologist. This involved many 5 hour trips to Sydney, but it was worth it for me. Not everyone can manage to do this which shows care is not equally available.”

“Treatment needs to be more accessible in regional hospitals. Travel to cities puts a huge strain on families.”

“When I was having my transplant at a city-based hospital, there was a lot of social support. However, once I returned to my home town I found a paucity of support services. Myself and my wife needed support for the next step of my recovery and guidance.”

“Need access to specialists closer to home. Travelling such vast distances takes a large toll on already fragile patients.”

While achieving clinical best practice is the highest strategic objective for patients, no single action can deliver this outcome. It needs systemic, multilateral, multi-year reform efforts across the health settings.

Key actions to improve the diagnosis, treatment, and care of people living with blood cancer are set out in the latest State of The Nation report and the National Strategic Action Plan for Blood Cancer (NAP) which is a blueprint to coordinate and accelerate national efforts to improve survival and quality of life for people diagnosed with blood cancer, and to support their carers and families.

The NAP noted challenges to achieving best practice including accuracy of diagnosis, variation in clinical practices, inconsistent access to supportive care, workforce challenges, and financial hardship for patients and their loved ones. Patients need to be appropriately triaged to blood cancer support services, including written care plans and referrals to supportive care, to ensure they receive the right support throughout their journey, starting at diagnosis.

Specific challenges exist around the delivery of diagnostic services for blood cancers that are defined as minimum standard of care by blood cancer guidelines. These include genomic testing which informs diagnosis, prognosis, and therapy choice. Also, accessing a stem cell transplant, which for many blood cancer patients, can provide a long-term cure if successful, and for some may be a last resort therapy. And there are other challenges that need to be addressed relating to culturally and linguistically diverse people and people across their lifespan.

 

The healthcare system’s complexity is a barrier to empowering patients

Another area of concern for blood cancer patients are gaps in Australia’s capabilities in the health system which they not only want to work for them, but to trust to consistently deliver best practice care.

Many people find the healthcare system complex and confusing, with substantial barriers to accessing information and services that improve patient outcomes and experience. Many patients feel confused by their diagnosis and treatment plan, and report blood cancer-specific difficulties. Analysis of responses from the 2022 patient and carer survey indicated that at the time of diagnosis 38% of patients had a lot of questions or felt completely uncertain about their diagnosis and 22% understood their diagnosis well enough but having more information would have helped.

As well, 16% of patients had many questions or were uncertain about their treatment plan, with 26% who understood well enough but, again, more information would have helped. A large number of patients also expressed the desire for more assistance – information about support organisations, emotional and psychological support, physical support, nutrition and dietetic support, and practical and social support.

 

Models of care and clinical best practice for blood cancer

Australia doesn’t have world’s best practice for the treatment of blood cancer so there are therapies that are used overseas that are not available in routine clinical practice in Australia.

This was a State of The Nation 2023 report finding when current Australian clinical practice for diagnostics is compared to international clinical guidelines for standards of care issued by the National Comprehensive Cancer Network (NCCN) in the U.S., European Society for Medical Oncology (ESMO), and the National Institute for Clinical Excellence (NICE), in the UK. In contrast to other developed nations, Australia also does not have national guidelines to inform clinical practice for blood cancer.

Substantial progress has been made in the development of Optimal Care Pathways (OCPs) for blood cancers, but more work is needed to develop Australian clinical guidelines for best practice care. Respected and well adopted clinical practice guidelines improve patient outcomes by bringing together available evidence to underpin scientifically valid recommendations for the diagnosis, treatment, and care of patients.

In addition to defining models of care and clinical standards for blood cancer treatment and care, investing in workforce capacity and skills development are key areas of need in achieving clinical best practice.

The federal government has funded the development of one clinical guideline for blood cancer through the Phase I implementation of the NAP, which is currently underway and is an important first step in how best to deal with the complexities of a national approach to the development, governance, and maintenance of guidelines. As well, development of a properly conceived and designed national cancer data ecosystem should allow for monitoring adherence to clinical best practice against these guidelines and identification of practice improvements.

 

The role of GPs in blood cancer care

The blood cancer community has endorsed calls for new approaches to supporting General Practitioners (GPs) who play a central role in blood cancer diagnosis and ensuring patients access high quality care. Their role is changing, and could increase, due to new treatment modalities such as the more frequent use of oral therapies and the increase in long-term management of cancer conditions.

In response to these trends, tertiary centres are piloting shared care models which enable patients to access more localised care. To achieve transformations in models of care in the diagnosis and treatment of blood cancers there’s an increased need for the education and support of GPs, to improve their knowledge of blood cancers for when patients present.

Poor awareness by many GPs of the signs and symptoms of blood cancers contributes to delays in diagnosis and referral. The lack of GP understanding of blood cancers was reported in the first State of the Nation to lead to inefficiencies in health service delivery, from misdiagnosis, referrals to the wrong specialist, and delays in appropriate treatment.

The Leukaemia Foundation has since worked with the Royal Australian College of General Practitioners (RACGP) to improve awareness and understanding of blood cancers. The RACGP promoted the NAP among GPs and also provided its endorsement.

Completion of the first five blood cancer OCPs will ensure blood cancer education and training is ready to be delivered as GP education is rolled out. Increased engagement with GPs, to improve their understanding and recognition of blood cancers, and the use of the blood cancer OCPs in guiding further treatment strategies is part of the Australian Government’s future funding as part of implementation of the draft Australian Cancer Plan (ACP).

 

Some background on the State of the Nation report

The initial State of the Nation: Blood Cancer in Australia report, launched in 2020, was the most comprehensive and largest report of its kind in Australia. It identified challenges and opportunities that influence survival and quality of life for people living with blood cancer and set a goal, that by 2035 there would be no preventable deaths from blood cancer in Australia.

The second State of the Nation: Blood Cancers in Australia Report was released in February 2023. 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 seeking further government funding.