Compelling data on the impact of blood cancers in Australia have helped bring the federal government on board in the bid to reach a stretch goal of zero blood cancer deaths by 2035.
The support has led to the creation of a taskforce to develop Australia’s First National Strategic Action Plan for Blood Cancer.
The taskforce’s first meeting will be held on 30 September with recommendations due back to the Health Minister before May 2020.
Leukemia Foundation CEO Mr Bill Petch, who will co-chair the taskforce with Professor John Seymour from the Peter MacCallum Cancer Centre, is bullish about the challenge.
“In this field, people either set targets that are so easily met they are meaningless or they set targets that are so difficult, nobody takes them seriously. With Zero deaths by 2035, it’s meant to be ambitious.”
“Most clinicians will say that with the really significant changes in technology, especially around genomics and immunotherapy, we are going to see significant improvements in outcomes for patients.”
“In order to us to benefit from those, we have actually got to create the right pathways for access to them.”
“I think what is really achievable in the short term is zero preventable deaths and if you get to zero preventable deaths, it’s a very short step to zero deaths.”
“As a patient organisation, I think we can be ambitious and we can use this as a lever to bring people together and create the change that we need.”
According to a State of the Nation: Blood Cancer in Australia report for the Leukaemia Foundation, improving access to people in regional areas could reduce blood cancer deaths by about 5%.
More consistent application of best practice treatment and care across all states and territories has the potential to reduce deaths by a further 8%.
“In total, more than 22,000 lives and 350,000 years of potential life could be saved over the 2018-2035 period just by doing what is already proven to work and already funded in Australia more consistently,” the Report said.
The Report is based on meetings with the Foundation’s stakeholders, existing data and a qualitative survey of 3,000 patients.
Mr Petch said most of the feedback was around access.
“And access isn’t just one thing. It means different things at different parts of the patient journey right from diagnosis.”
“Some of the things they were asking for e.g. being able to navigate the health system better, being able to access new and emerging therapies faster, we knew that we couldn’t do that on our own.”
“We knew that we needed to engage with government in a much more meaningful way and build a coalition.”
He said the research demonstrated the size and scale of the impact of blood cancers was greater than a lot of people have recognised.
It found the total financial costs to treat people diagnosed in 2019 for the remainder of their lives was $3.44 billion; the total lifetime burden of disease including years of life lost and years lived with a disability was $19.47 billion.
“One of the biggest access issues is cost and a lot of the costs are hidden and not well understood by patients and families,” Mr Petch said.
He added that many people were also not prepared for the complexity of health system.
Smoothing some of the pathways might give patients in regional areas the opportunity to access clinical trials they may otherwise have passed on or for patients to access psychosocial support or physical rehabilitation to help manage fatigue.
“We have to focus on making referral pathways smoother especially at the beginning after a diagnosis so patients can get the support they need.”
“We’ve heard so often about people with diseases like CLL who, because they are on watch and wait, don’t get access to support earlier enough and it creates anxiety or depression and they don’t manage their disease well because they are not given the support to do that.”
Mr Petch said the taskforce, bringing together some 20 experts from around the country, was passionate about making the plan happen.
“The Minister has already made it clear that he expects the recommendations that come back will present a road map for him and us to engage on around how we actually shift the dial. So I think he is expecting to resource those recommendations. This is not just a tick and flick.”