more_vert
Leukaemia treatment in Australia has been labelled a “postcode lottery” due to inconsistencies in treatments, and the Co-Chair of the Blood Cancer Taskforce is pushing for more funding in the May federal Budget to standardise clinical guidelines.
New modelling in the Leukaemia Foundation’s report State of the Nation: blood cancers in Australia 2023 shows the lives of eight people with blood cancer could be saved each day across Australia by implementing consistent treatment standards.
The report surveyed 4600 Australians, uncovering inconsistencies in blood cancer treatments and considerable out-of-pocket costs for patients and their families.
Professor John Seymour, Director of Haematology at the Peter MacCallum Cancer Centre and the Royal Melbourne Hospital, said there are several inconsistencies in the treatment of blood cancers in Australia.
“A critical issue in the delivery complex treatments for blood cancers is firstly around [obtaining an] accurate diagnosis,” Professor Seymour told InSight+.
“Experienced high volume expert anatomic pathology is important. While blood cancers as a group are common, there are nearly 200 different and separate disorders. Many of them are rare and complex in their pathologic presentation, so recognition even once a biopsy has been done can be demanding for health centres or [hospital] departments that do not have a high volume of blood cancers.”
Professor Seymour said the availability and timeliness of complex testing requirements in different hospitals also play a part in the inconsistency of care.
“Molecular pathology is a very important adjunct to the establishment of an accurate diagnosis,” he said.
“The availability and timeliness of those hyper-complex testing is quite variable both metropolitan public and private facilities as well as across rural and regional areas. Access to accuracy of and timeliness of diagnosis is, in my experience, likely to be one of the contributors.”
Tim Murphy, the General Manager of Blood Cancer Partnerships at the Leukaemia Foundation, agreed with Professor Seymour’s assertion, telling InSight+ that reaching an accurate diagnosis can be a further challenge for patients and doctors.
“We know that blood cancers can present as COVID-19, they can present as back pain or a whole range of different conditions,” Mr Murphy said.
“It takes a bit of time to go through and find an accurate diagnosis. For GPs and other doctors that do not see many haematological disorders, often it is a challenge.”
Mr Murphy also said health system constraints are letting down doctors and their patients.
“A second issue is around capacity in the system,” Mr Murphy said.
“There are capacity constraints everywhere in our health system from seeing a GP, and then that GP being able to refer to an appropriate specialist. One of the reasons why it takes so long [to come to a diagnosis] is [the process of] identification of symptoms and finding the right specialist.”
One key concern, highlighted in the report, is the high out-of-pocket costs facing patients with blood cancer, with about 15% of patients experiencing out-of-pocket costs greater than $10 000 .
“This [process] is made more challenging by issues of access, travel time, and cost that patients face,” Mr Murphy said.
“Patients traveling from regional areas face the cost of travel to the city, the cost of accommodation, the additional cost of having private health. There are always out-of-pocket costs. These are barriers that individuals face. With the cost-of-living pressures, they are exacerbating all these no medical barriers.”
Professor Seymour is co-chair of the Blood Cancer Taskforce, which was established in September 2019 by former Minister for Health, Greg Hunt.
The Taskforce brings together 32 haematologists, researchers, patients and advocates, and aims to raise awareness in the medical community of the non-specific nature of many blood cancer symptoms.
“Unlike many other cancers, blood cancers are prevalent across all age groups and all genders,” Professor Seymour said.
“It is important for doctors to have an awareness of the possibility that blood cancer might be the underlying explanation for what may seem no specific symptoms (persistent, progressive and unexplained).
“In many cancer domains, the goals of early detection and prevention are having a major impact in reducing the burden of cancer in the Australian community. Unfortunately, because there is no high risk group identified for blood cancers and because of the wide age group, there is no effective screening, early detection or prevention strategy. We cannot rely on the strategies used for other cancers.”
The Taskforce is hoping for additional funding in the May federal Budget to develop standardised clinical care guidelines for blood cancers.
“We are looking to have a more consistent medical approach for blood cancers that other cancers already have,” Mr Murphy said.
“Optimal care pathways need to be documented. In parallel with that, we will develop up-to-date relevant clinical care guidelines, which give clinicians a short, up-to-date best practice approach when someone presents in front of them.
“This will help save lives. With these rare diseases, when a patient presents to a doctor who does not see them very often, it creates a conundrum. If we have these guidelines and best practices, the patient will be able to get best practice treatment.”
Subscribe to the free InSight+ weekly newsletter here. It is available to all readers, not just registered medical practitioners.
I feel like I was one of the lucky ones in terms of winning the post code lottery when I was diagnosed with leukaemia in 2018. But it still wasn’t easy. It took almost 9 months from when I started to have symptoms before I received a final diagnosis and there were many steps in between. I was fortunate for a range of reasons, from where I live and my proximity to excellent hospitals to the fact that I am educated and was tenacious about understanding why I was experiencing the symptoms I had. I also had an excellent GP who was as tenacious and curious as I was. When I was in hospital I heard stories from people from all over the country whose experience was very different to mine. They also had to deal with traveling long distance and managing all the challenges of that extra layer of complexity. I’m so glad that we are moving towards a standard of care and practice for everyone. Blood cancer is different to other cancers. It’s much more of a chameleon and therefore harder to identify and pin down.