Despite Australia’s universal health care system, cancer patients face many unexpected and hidden costs that can seriously impact them and their loved ones.
From diagnosis to treatment, recovery, follow-ups and ongoing care, costs can manifest in many ways. People may have to pay for medications, scans, tests and appointments. There are also additional, unanticipated costs like transport, parking and accommodation that add up.
Consultations we conducted with community members in 2019 as part of our submission to the State Government’s Victorian Cancer Plan, identified ‘the cost of cancer’ as an ongoing and growing issue. This is why we are committed to reducing costs and improving transparency to help guide and inform decision making for people affected by cancer.
"It is not equal for everybody. There are some wonderful, wonderful doctors and surgeons out there and everyone that I've had has made me feel secure and safe and well cared for. They've shown empathy and I feel that they care for me, but I know they're not all like that. To charge someone thousands of dollars for their mastectomy is just not fair.” – Jenni
Read our full submission to the Victorian Cancer Plan
Out-of-pocket expenses can lead to ‘financial toxicity’ and ‘bill shock’ that can impact the health and wellbeing of patients and carers during an already vulnerable time.
‘Financial toxicity’ is the distress or hardship arising from the financial burden of cancer care and is increasingly considered a side effect of cancer treatment. Many people may have to stop work during their treatment, so paying for their medical care and usual life expenses can be difficult.
“Someone brought some mail in for me and it was all bills. Electricity, gas and my car rego were all due. All my savings had already gone to paying for all the visits to the specialists. When those bills started piling up, I was just so scared. I’ve never been in debt in my life.” – Vicki
The main reason for connecting with Cancer Council Victoria’s 13 11 20 information and support service relate to practical concerns including financial and legal issues, composing 37% of calls in March 2021. 1 in 6 people report skipping medications or delay seeing a specialist for concerns about cost.
At a time when people should be focused on their health, extra and often unavoidable costs can become a real source of stress and worry. Which is why we are working with Deakin University to gain a better understanding of Victorians' experiences of the cost of cancer care from diagnosis to follow-up care.
Access resources about the cost of cancer and suggested questions for your doctor and health insurer
The cost of cancer in Australia
What you pay depends on the type of cancer you have, your care and how you access health services. Over the total lifetime of treatment, cancer patients pay about 15% of the cost of their cancer care from their own pocket. Many patients experience ‘bill shock’ in not knowing what these out-of-pocket costs will be prior to their treatment.
A Consumer Health Forum of Australia (CHF) survey found that more than a quarter of respondents having treatment for cancer incurred costs of more than $10,000 over a two-year period. It is estimated that between half and three-quarters of cancer survivors have experienced financial stress as a result of their treatment.
Those with private health insurance may face at least almost double the out-of-pocket costs for cancer treatment than those treated publicly, largely due to higher out-of-pocket costs for direct medical expenses including surgeries, chemotherapy, radiotherapy, diagnostic tests and specialists’ visits.
“I chose to go private, but of course, that brings its own costs with it, because each time you see the surgeon or the oncologist, it costs more money. Now I’m on superannuation and I’m not working, the cost is of more concern to me.” – Carol
Read common myths and access a useful checklist about the costs of cancer in this helpful guide
Standard for Informed Financial Consent
We believe all patients have a right to know what costs they will incur following a diagnosis in Australia, which is why we worked with Cancer Council Australia and the McCabe Centre for Law & Cancer to develop a Standard for Informed Financial Consent. It provides clear and concise guidance to help healthcare practitioners ensure their patients clearly understand the costs of their treatment and the options available, enabling them to decide what is best and plan accordingly.
Read the Standard for Informed Financial Consent
Our support and advocacy
The increased costs of cancer can lead to financial burden and stress, which reduces the quality of life and wellbeing for many people affected by cancer. While we cannot eliminate all out-of-pocket costs, we can act to minimise the impact on those most negatively affected.
Our work to reduce the cost of cancer is multifaceted and currently focused on:
Many people affected by cancer regularly identify parking costs as a source of distress that impacts their experiences of care. In 2015, we undertook an extensive investigation of parking at cancer treatment centres across metropolitan and regional Victoria, and demonstrated the disparity in information provided about parking and subsidy schemes.
For example, we found that parking at a metropolitan centre for a patient with breast cancer was estimated at over $1,100 for one year. We continue to examine current costs and advocate for free or subsidised parking for all patients with cancer, as well as for greater transparency around parking costs.
Read the summary or download the full report
Transport and accommodation costs
Raise the rate campaign
A cancer diagnosis is a stressful experience both for people living with cancer and their carers and many people need financial support from the government during this time.
Cancer Council has contributed to government submissions addressing the inadequacy of current payments and is continuing to advocate directly to policy makers through the Raise the Rate campaign. It forms part of our broader plan to call for a more flexible and holistic income support system that considers an individual’s healthcare needs when accessing support.
We would also like to see better access to support workers who specialise in cancer and a case management approach to Centrelink trialled, to help people living with cancer and their carers better navigate the welfare system and avoid the demands of the current system which can be difficult if a person is ill.