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The financial cost of cancer creates a significant burden and negatively impacts many people in Australia. This burden disproportionately affects socioeconomically disadvantaged populations, promoting inequity in healthcare access. However, the financial burden from cancer can affect anyone and at any time.1, 2 Living in a country with universal healthcare and a publicly-funded social security system, Australians affected by cancer should not be financially ruined, receive sub-optimal care or be unable to obtain healthcare because of the financial impact of cancer.

Financial toxicity is the negative patient-level impact of the financial costs of cancer. Illustrated in Figure 1, it is the combined impact of direct out-of-pocket costs for medical treatment, indirect costs such as accommodation and travel costs (especially for people living in regional, rural and remote areas), and the changing financial circumstances of an individual and their household resulting in loss of income due to cancer. These financial burdens can cause both physical and psychological harms, affecting decisions which can lead to suboptimal cancer outcomes.3 Financial toxicity includes both the objective financial burden of cancer and the subjective financial distress experienced as a result of a cancer diagnosis.4

Figure 1. Financial toxicity in cancer care.3

Out-of-pocket costs can vary significantly depending on individual circumstances – they may be low or high, once-off or frequent, and can accumulate over time. The impact of out-of-pocket costs can be exacerbated by loss of income due to changes in work capacity following a cancer diagnosis, which affects the broader family and household alongside the person with cancer.5 This can influence decisions affecting the care received, contributing to delays to acting on symptoms, completing a referral or even foregoing recommended treatment, testing, or care.6, 7 Similarly, the effect of long-term financial instability that may arise from drawing upon savings, increasing credit, and accessing superannuation early to pay for medical and daily living expenses, can leave families in poor financial positions long after treatment has been completed.8

All Australians affected by cancer should be adequately supported to make informed choices about their cancer treatment and healthcare. However, some people feel they have no choice about where they receive care or how much they must pay. Many Australians believe that all expenses related to their cancer treatment and care will be covered by their private health insurance or the public healthcare system, only to realise as treatment progresses that this is not the case.7 This can lead to significant financial burden and stress in addition to the emotional, physical, and practical challenges of experiencing cancer treatment.7

Government healthcare funding decisions and policy settings to reduce the financial, mental and emotional burden for people affected by cancer can influence demand for social welfare services such as income support.9 Thus, effectively addressing the financial costs of cancer will deliver benefits beyond the immediate outcomes for people affected by cancer, benefiting the broader Australian society.10 

While this section is focused on the financial cost of cancer, not all costs related to a cancer diagnosis are financial. Cancer can have a long-lasting social and emotional impact on the people affected by cancer, and the broader Australian community. The ability to work, progress a career, maintain stable social and family relationships, and be present for life milestones are immediate human challenges that people with cancer face. In addition, these challenges can continue into survivorship.9


Definitions

Financial burden

A term used to describe the financial problems a person has related to the cost of healthcare. People affected by cancer are more likely to have financial burden than people not affected by cancer.

Financial toxicity

The negative patient-level impact of the cost of cancer. It is the combined impact of direct out-of-pocket costs of treatment and indirect costs, causing both physical and psychological harms, affecting decisions which can lead to suboptimal cancer outcomes.3 Financial toxicity combines the objective financial burden with the subjective financial distress experienced as a result of a cancer diagnosis.4

People with cancer

Individuals who have or have had a cancer diagnosis, and/or have undertaken cancer treatment and/or services.

People affected by cancer

Those people and relationships with the person with cancer that may be impacted by the cancer diagnosis, such as family, social networks, the workforce and the broader community. With that in mind, the term, ‘people affected by cancer’ usually refers to a person with cancer and their immediate family, carers and friends.

Cancer Survivor

An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer. This term is meant to capture a population of those with a history of cancer rather than to provide a label that may or may not resonate with individuals.11

References

  1. Paul C, Boyes A, Searles A, Carey M, Turon H. The impact of loss of income and medicine costs on the financial burden for cancer patients in australia. The Journal of community and supportive oncology. 2016;14(7):307-13.
  2. Callander EJ, Fox H, Lindsay D. Out-of-pocket healthcare expenditure in australia: Trends, inequalities and the impact on household living standards in a high-income country with a universal health care system. Health Economics Review. 2019;9(1):10.
  3. Varlow M, Bass M, Chan RJ, Goldsbury D, Gordon L, Hobbs K, et al. Financial toxicity in cancer care Clinical Oncology Society of Australia; 2022. https://cosa.org.au/media/q3ohepgs/financial-toxicity-in-cancer-care-7.pdf
  4. Zafar SY, Abernethy AP. Financial toxicity, part i: A new name for a growing problem. Oncology (Williston Park). 2013;27(2):80-149.
  5. Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: Understanding and stepping-up action on the financial toxicity of cancer treatment. CA: A Cancer Journal for Clinicians. 2018;68(2):153-65.
  6. Gordon L, Elliott T, Olsen C, Pandeya N, Whiteman D. Out-of-pocket medical expenses for queenslanders with a major cancer. The Medical journal of Australia. 2018;208(11):497.
  7. Gordon L, Elliott T, Olsen C, Pandeya N, Whiteman D. Patient out-of-pocket medical expenses over 2 years among queenslanders with and without a major cancer. Australian journal of primary health. 2018;24(6):530-6.
  8. Bygrave A, Whittaker K, Paul C, Fradgley EA, Varlow M, Aranda S. Australian experiences of out-of-pocket costs and financial burden following a cancer diagnosis: A systematic review. International Journal of Environmental Research and Public Health. 2021;18(5):2422.
  9. Rare Cancers Australia, Canteen, HTAnalysts. Counting the cost: The true value of investing in cancer treatment Sydney (AU); 2022. https://www.canteen.org.au/about-us/canteen-reports/counting-the-cost-report
  10. Australian Institute of Health and Welfare. Health expenditure australia 2020-21. Canberra: AIHW; 2022. https://www.aihw.gov.au/reports/health-welfare-expenditure/health-expenditure-australia-2020-21
  11. National Cancer Institute. Survivorship terms, adapted from the national coalition for cancer survivorship. 2022. https://cancercontrol.cancer.gov/ocs/definitions