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Financial Cost of Cancer Summary
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Policy priorities

Policy priorities – immediate and short-term

Financial Cost of Cancer

Policy priorities – immediate and short-term

Addressing the following immediate and short-term priorities will help address the impact of the financial costs of cancer. While these priorities require Federal Government action, the role of state and territory governments has also been identified.

1. Implement the Standard for Informed Financial Consent

Priority

Develop, support and implement a consistent documented procedure to assist healthcare service providers in explaining the costs associated with cancer treatment.

Impact

Informed financial consent requires that patients be provided information about the costs of treatment, preferably in writing. Several peak Australian cancer organisations collaborated to develop the Standard for Informed Financial Consent as a guide for healthcare service providers to conduct discussions around the costs, risks and benefits of treatment, to enable individuals and families to better understand the financial impact.1 These discussions can help avoid or reduce the impact of bill shock and financial toxicity and enable individuals to make informed treatment decisions. These discussions are relevant to both public and private settings; as costs can be incurred even if the individual is treated exclusively in the public health system.1

There is currently no mandated requirement for informed financial consent. Mandating a consistent informed financial consent process will ensure all Australians have the opportunity to make financial arrangements to receive optimal cancer care.

Evidence informing the priority

Health literacy as a determinant of treatment costs

Health professionals are a preferred source of health information but often underestimate patients’ needs.2 The shock or stress of a cancer diagnosis can dramatically reduce an individual’s health literacy, making them vulnerable to misunderstandings or accessing unreliable information sources.3 Health literacy is directly correlated with an increased understanding of health insurance coverage and decreased financial toxicity.4 Lower levels of health literacy result in higher healthcare service utilisation, potentially increasing overall healthcare costs.5 Therefore, the provision of financial information and education could reduce the financial toxicity experienced by people affected by cancer.6

Transparent information about costs helps support decision making

People affected by cancer may be faced with unexpected out-of-pocket costs of treatment, especially in the private sector.7,8 People often opt for private sector treatment due to their (often erroneous) perception that waiting times are longer in the public healthcare system.9, 10 Individuals are also influenced by a perception they will receive better care in the private sector, even though it has been shown that healthcare service fees do not correlate with the quality of care.11

Healthcare professionals are supported to lead conversations around costs

Healthcare professionals agree about the importance of discussing the financial costs of cancer with patients.12 Currently, 34% of oncologists report having a conversation about finances with half of their patients.13 However, significant barriers exist to initiating these conversations.12 A barrier is confidence in the subject matter, with healthcare professionals stating they need more information to effectively discuss finances.14 Oncologists reported that ‘cost information on a website and/or handouts’ would help them facilitate a conversation about out-of-pocket costs.13

Reduced financial stress enables better decision making

Treatment decisions should ideally be made based on optimal cancer outcomes, however, it is common for cost to influence decisions.15 People with cancer alter their treatment to reduce costs, such as using over-the-counter instead of prescribed medications, or using existing medication rather than purchasing a new or updated prescription.16 People are often unaware of the availability of financial support options. More than 1 in 2 people who did not access support services reported needing them.15 To prevent costs from becoming a barrier to optimal cancer care, healthcare professionals need information about available financial support services to refer their patients.17 In addition, people should be empowered to play an active role in their treatment choices without associated financial pressure.8


2.  Improve the experience of people affected by cancer who require income support payments

Priority

Ensure people affected by cancer who require income support payments can access the most appropriate program through Services Australia, without onerous reporting or exemption processes.

Impact

Following a cancer diagnosis, an individual’s capacity to work is often reduced, adversely impacting their household income. This is compounded when other family members have reduced capacity to work while caring for the person with cancer, especially if it is a child. Without appropriate financial support, people with cancer have difficulty accessing and continuing the optimal cancer treatment and may risk financial hardship.

Centrelink income support is available for people affected by cancer, however, their awareness and the rates of financial support are limited. People report challenges engaging with Services Australia in the application screening and approval system, which is a burden while undergoing treatment. All Australians should receive adequate income support to meet their basic needs and avoid falling below the poverty line, particularly while undergoing cancer treatment. Providing appropriate income support assistance to people living with cancer would help reduce their financial and emotional stress and allow them to focus on treatment and recovery.

Evidence informing the priority

Supporting individuals and families unable to work

The ability to undertake paid work during cancer treatment is impacted by the time required to attend appointments, feeling unwell due to treatment and its side effects, and/or caretaking needs.18 It is estimated half of working-age adults with cancer in Australia are no longer in the workforce.19 Common barriers to remaining in the workforce include job type (i.e., manual labour); cancer type and prognosis (i.e., people with advanced cancer); and age at diagnosis (i.e., older people retire earlier than planned).18, 20, 21 Enablers for remaining employed include work hours flexibility and adequate leave entitlements.20 For people who returned to work earlier than planned after a cancer diagnosis, most reported they were experiencing financial difficulty.22

Accessibility of social support programs for people unable to work

Due to increased medical and living expenses, and a reduced capacity to work, people affected by cancer often require financial support during treatment and recovery. Although there is a lack of awareness about the available financial supports.15

The application process for income support and related benefits through Services Australia is seen as ‘slow, rigid and bureaucratic’, and a burden for people affected by cancer.23 People have shared experiences of lengthy and onerous activity and reporting obligations required for continued JobSeeker eligibility, including frequently submitting extensive paperwork, such as medical exemptions from job search requirements. People report being required to sign up for an employment agency, despite not being able to work. This all places an unnecessary, undue, and potentially harmful burden on people undergoing cancer treatment and recovery. Households with dual incomes may be excluded from accessing income support due to income and assets tests, even if one parent is unable to work while caring for a child with cancer. In this situation, it does not account for the broader financial impact of cancer and burden of financial toxicity on the household.

The Disability Support Pension (DSP) is paid at a higher rate than JobSeeker and is intended to support people unable to actively seek employment due to disability. People with cancer who receive the DSP can access more appropriate care and decreased financial distress.23 However, the strict eligibility criteria for DSP means people in acute financial distress often have to wait to see if they are eligible.23 Previous DSP eligibility criteria required applicants’ to be ‘fully diagnosed, treated and stabilised’, resulting in few people with cancer qualifying. Numerous people with cancer have shared experiences about being denied DSP and instead allocated the lower JobSeeker payment. March 2023, the DSP eligibility criteria changed to applicants with a medical condition that has been ‘diagnosed, reasonably treated and stabilised’. This led to more people diagnosed with cancer and unable to work qualifying for DSP, however, whether this results in more claimed payments is yet to be seen.

Priority

Improve Services Australia staff training to better support people affected by cancer who are medically unfit to work by linking them to appropriate income support and applying proportionate administrative requirements.

Impact

People affected by cancer should be able to access income support payments appropriate to their situation. A barrier to this is having the necessary knowledge to navigate the complex bureaucratic application forms and processes. This is exacerbated by the onerous and disproportionate administrative requirements involved in maintaining eligibility for income support payments. These requirements add strain on people already experiencing heightened stress because of their cancer diagnosis. People can become overwhelmed and pressured to opt out of income support, which can leave them with financial toxicity and may lead to suboptimal cancer outcomes. Funding the training of Services Australia employees about the circumstances and needs of people with cancer could help to ensure they access the income support payments they need.

Evidence informing the priority

Awareness of Services Australia programs for people affected by cancer

Many people affected by cancer are unaware of financial assistance programs.24 A study of Australian cancer patients found a general lack of awareness about Services Australia provided support programs; and those who were aware, a lack of suitable options.15 Similarly, among people caring for someone with cancer, only 58% were aware of the Carer Payment offered by Services Australia, and only 29% were eligible.25 The low level of eligibility even applies to carers of children with cancer.26 Carer Allowance is a non-means-tested payment but provides lower levels of financial assistance compared to the Carer Payment. Few people are aware they may be eligible for Carer Allowance despite being ineligible for Carer Payment.

Difficulty navigating and accessing Services Australia programs

People affected by cancer have difficulty accessing Services Australia programs due to the complex application process.25 Difficulties include the need to re-apply from the beginning if your first application is unsuccessful; receiving incorrect advice; difficulty lodging an application or experiencing delays.25 These barriers leave people feeling discouraged and in a worse financial situation due to delays in accessing support.23


3. Improve financial support for people affected by cancer living in regional and remote areas

Priority

Implement a national best practice standard for patient-assisted travel schemes to ensure access to optimal cancer care. This should require funding to reflect an appropriate proportion of the actual cost, and not lead to lower rates of financial support than currently provided.   

Impact

State and territory-based patient-assisted travel schemes are inconsistent. These schemes are funded by the Australian Government, but differing implementation in states and territories has led to variable eligibility criteria and insufficient payments to cover travel to a metropolitan specialised treatment centre. As a result, people affected by cancer who must travel for treatment receive different subsidies based on where they reside and are often left with significant out-of-pocket costs. The lack of uniformity of these schemes contributes to the inequity of access to optimal cancer care across Australia.

The implementation of a national best practice standard to guide the administration of these schemes would help ensure equitable funding for travel for people affected by cancer.

Evidence informing the priority

Patients travel long distances to receive optimal cancer care

Patients living outside metropolitan or major regional centres are required to travel significant distances for cancer treatment, due to limited access to multidisciplinary team care closer to home.27 A longitudinal cohort study of cancer patients from New South Wales and Victorian cancer registries found that outer regional and remote patients had the greatest travel burden.28 Around 61% travelled at least two hours one way to receive treatment, and 49% lived away from home to receive treatment.28 Distance to a treatment centre impacts outcomes, with significant differences in survival outcomes for people living in the same city, compared to those who travel for treatment; in addition, survival odds were significantly lowered, the further they travelled for treatment.29

The financial toxicity of travelling for treatment

Around 1 in 10 Australians with cancer temporarily live away from home while accessing cancer treatment.28 Furthermore, one-third who travel for two hours or more to access treatment report experiencing financial difficulties.28 For people affected by cancer who own a farm or rural property, this financial difficulty is worse as they must outsource work while away from home, adding to the financial burden and psychological stress.30 For people residing in regional, rural and remote areas, fuel and accommodation are the most common expenses, and then treatment.31

State-based inequities in support

Under the National Healthcare Reform Agreements, each state and territory administers their own patient accommodation and travel schemes to ensure access to public hospital services for all eligible persons, regardless of geographic location.32, 33 However, a lack of consistency among the schemes risks inequity in access to optimal cancer care across Australia.32 Eligibility and reimbursement rates vary significantly between state and territory schemes and are often insufficient to cover the costs of visiting a metropolitan treatment centre.32 Therefore, even eligible people may be left with significant out-of-pocket costs for travel and/or accommodation.34


4. Increase access to financial counsellors for people affected by cancer

Priority

Increase financial counselling services for Australians affected by cancer through an industry-funded model and increased investment from Federal, state and territory governments.

Impact

Supporting Australians affected by cancer with early access to financial information and services will reduce the risk of financial toxicity and making treatment decisions based solely on cost. By advocating directly with creditors and service providers, financial counsellors help relieve the stress, burden and cognitive overload experienced by people with cancer. Creditors when aware of their customer's circumstances, such as a cancer diagnosis, can help provide hardship options, including changes to loan conditions and repayment plans, or for acute and impermeable financial hardship, partial or complete debt waivers.

There is currently a significant unmet demand for financial counselling services and a need for investment to ensure people can access these services when needed. This could be achieved through contributions from industry (i.e., financial, energy, telecommunications, and water sectors) to an independent body to distribute funding for services. While currently voluntary, this model should be legislated to ensure investment reaches the required level to meet demand and is sustainable in the long term. This model evolved from Recommendation Two of  ‘Countervailing Power: Review of the coordination and funding for financial counselling services across Australia’, known as the Sylvan Review. Unfortunately, this model alone is unlikely to fill the funding gap and additional funding will be required from Federal, state and territory governments.

Evidence informing the priority

Behavioural barriers to seeking help

People affected by cancer often don’t raise financial concerns or seek financial assistance due to the embarrassment and stigma associated with claiming income support.35 During cancer treatment, people after often exhausted by the symptom burden associated with treatment and can feel overwhelmed due to financial distress they are unsure how to address.35 The complexity of application forms and eligibility criteria required to receive financial support are barriers to people trying to navigate the income support system for the first time.35

Referral to support services

People affected by cancer often use savings and assets to pay for treatment and daily living expenses. The impact of drawing on these resources to pay for treatment and recovery, means people in a comfortable economic position before a cancer diagnosis, risk becoming financially worse off.35, 36 Neither financial literacy nor educational status have a significant impact on help-seeking behaviours.37 A study of Australian oncologists’ found that 86% supported the idea of having a financial navigator in the clinic to discuss financial concerns with patients and families.13

Lack of a standardised way to assess financial burden

Clinical guidelines generally lack information for healthcare professionals on detecting financial burden or vulnerability among patients, limiting their ability and confidence to intervene.17 For those who wish to routinely screen patients for financial toxicity, it is advisable to use validated tools that account for out-of-pocket costs and the impact of employment on finances for completeness.38

Unmet demand for financial counselling and options to address

An assessment of unmet demand found that for every five people seeking financial counselling, three were assisted and two were turned away.39 The Federal Government has undertaken consultations on how to establish an industry funding model for financial counselling.40 More needs to be done.

Priority

Develop a stand-alone core unit of competency training for financial counsellors focused on the needs of people affected by cancer.

Impact

Financial counsellors are trained to work with people with complex needs and financial distress due to illness. Current training courses for financial counsellors include stand-alone elective units covering skills such as, “Provide services to people with co-existing mental health and alcohol and other drugs issues”. Therefore, developing a unit focused on the specific needs of people affected by cancer will expand their knowledge base to provide appropriate support.

Evidence informing the priority

Awareness of services to reduce the financial burden

People are often unaware of available services to discuss their financial circumstances and the impact a cancer diagnosis could have on their future finances. Healthcare professionals report a lack of awareness of how to address financial concerns or where to refer patients for support.12

Financial counsellors can assist with debt management, budgeting strategies, negotiate with debtors, and help clients avoid bankruptcy. They are responsible for helping build a client's knowledge, confidence and ability to manage their finances.41 People who spoke to a financial counsellor reported feeling less stress about the future (68%), improved relationships with family and friends (45%), and were able to access hardship programs to make their debt more manageable (73%).42 Financial counselling services are free.43


Definitions

Financial burden

A term used to describe the impact of financial issues a person may experience due to the costs of healthcare.

Financial toxicity

The negative patient-level impact of the costs associated with healthcare. These can include direct out-of-pocket and indirect costs that cause physical and psychological harm, affecting an individual's ability to make decisions and can lead to suboptimal outcomes.44 Financial toxicity combines the objective financial burden and subjective financial distress experienced as a result of a cancer diagnosis.45

People affected by cancer

People with cancer and the people with whom they have a relationship that are impacted, such as family, carers, friends, work colleagues 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.

References

  1. Cancer Council Australia, Breast Cancer Network Australia, CanTeen, Prostate Cancer Foundation of Australia. Standard for Informed financial consent. 2020. https://www.cancer.org.au/assets/pdf/standard_for_informed_financial_consent#_ga=2.199058732.242663079.1666665471-1953202788.1641853505
  2. Storms H, Aertgeerts B, Vandenabeele F, Claes N. General practitioners’ predictions of their own patients’ health literacy: a cross-sectional study in Belgium. BMJ Open. 2019;9(9):e029357.
  3. Soroya SH, Farooq A, Mahmood K, Isoaho J, Zara S-e. From information seeking to information avoidance: Understanding the health information behavior during a global health crisis. Information Processing & Management. 2021;58(2):102440.
  4. Edward JS, Rayens MK, Zheng X, Vanderpool RC. The association of health insurance literacy and numeracy with financial toxicity and hardships among colorectal cancer survivors. Supportive Care in Cancer. 2021;29(10):5673-80.
  5. Griffey RT, Kennedy SK, McGownan L, Goodman M, Kaphingst KA. Is Low Health Literacy Associated With Increased Emergency Department Utilization and Recidivism? Academic Emergency Medicine. 2014;21(10):1109-15.
  6. Zafar SY, Ubel PA, Tulsky JA, Pollak KI. Cost-Related Health Literacy: A Key Component of High-Quality Cancer Care. Journal of Oncology Practice. 2015;11(3):171-3.
  7. Gordon LG, Walker SM, Mervin MC, Lowe A, Smith DP, Gardiner RA, et al. Financial toxicity: a potential side effect of prostate cancer treatment among Australian men. European Journal of Cancer Care. 2017;26(1):e12392.
  8. Slavova-Azmanova N, Newton JC, Hohnen H, Johnson CE, Saunders C. How communication between cancer patients and their specialists affect the quality and cost of cancer care. Supportive Care in Cancer. 2019;27(12):4575-85.
  9. Freed GL, Allen AR. Variation in outpatient consultant physician fees in Australia by specialty and state and territory. The Medical journal of Australia. 2017;206(4):176-80.
  10. Babbage S, Hutchins D. Australia’s out-of-pocket healthcare problem. PwC; 2019. https://www.pwc.com.au/health/health-matters/out-of-pocket-healthcare.html#cta-2
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  12. Gordon LG, Nabukalu D, Chan RJ, Goldsbury DE, Hobbs K, Hunt L, et al. Opinions and strategies of Australian health professionals on tackling cancer-related financial toxicity: A nationwide survey. Asia-Pacific Journal of Clinical Oncology. 2022;n/a(n/a).
  13. Agarwal A, Karikios DJ, Stockler MR, Morton RL. Discussion of costs and financial burden in clinical practice: A survey of medical oncologists in Australia. PLOS ONE. 2022;17(10):e0273620.
  14. Sloan CE, Gutterman S, Davis JK, Campagna A, Pollak KI, Barks MC, et al. How can healthcare organizations improve cost-of-care conversations? A qualitative exploration of clinicians’ perspectives. Patient Education and Counseling. 2022;105(8):2708-14.
  15. Paul C, Boyes A, Hall A, Bisquera A, Miller A, O'Brien L. The impact of cancer diagnosis and treatment on employment, income, treatment decisions and financial assistance and their relationship to socioeconomic and disease factors. Supportive Care in Cancer. 2016;24(11):4739-46.
  16. 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.
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  21. Hafeez U, Menon S, Nguyen B, Lum C, Gaughran G, Pranavan G, et al. Young adults diagnosed with high grade gliomas: Patterns of care, outcomes, and impact on employment. Journal of clinical neuroscience : official journal of the Neurosurgical Society of Australasia. 2019;68:45-50.
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  23. Slavova‐Azmanova NS, Newton JC, Saunders C, Johnson CE. ‘Biggest factors in having cancer were costs and no entitlement to compensation’—The determinants of out‐of‐pocket costs for cancer care through the lenses of rural and outer metropolitan Western Australians. Aust J Rural Health. 2020;28(6):588-602.
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  29. Stoyanov DS, Conev NV, Donev IS, Tonev ID, Panayotova TV, Dimitrova-Gospodinova EG. Impact of travel burden on clinical outcomes in lung cancer. Supportive Care in Cancer. 2022;30(6):5381-7.
  30. McGrath P. 'You never leave work when you live on a cattle property': Special problems for rural property owners who have to relocate for specialist treatment. Aust J Rural Health. 2015;23(5):286-90.
  31. Newton JC, Johnson CE, Hohnen H, Bulsara M, Ives A, McKiernan S, et al. Out-of-pocket expenses experienced by rural Western Australians diagnosed with cancer. Supportive Care in Cancer. 2018;26(10):3543-52.
  32. Senate Standing Committees on Community Affairs. Highway to health: better access for rural, regional and remote patients. Canberra (AU): Commonwealth of Australia; 2007. Available from: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Completed_inquiries/2004-07/pats/report/index.
  33. Australian Government. NATIONAL HEALTH REFORM AGREEMENT 2020-2025. Canberra (AU): Australian Government, ; 2020.
  34. Chua A, Nguyen E, Puah LL, Soong J, Keesing S. Experiences of People with Cancer from Rural and Remote Areas of Western Australia Using Supported Accommodation in Perth While Undergoing Treatment. Current Oncology. 2022;29(2):1190-200.
  35. Fitch MI, Sharp L, Hanly P, Longo CJ. Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: a systematic review of qualitative studies. Journal of Cancer Survivorship. 2022;16(2):314-28.
  36. Pak TY, Kim H, Kim KT. The long-term effects of cancer survivorship on household assets. Health Econ Rev. 2020;10(1):2.
  37. Cutler H, Bilgrami A, Gu M, Gu Y, Aghdaee M. The role of financial literacy when paying for aged care. Sydney (AU): Centre for the Health Economy; 2021. https://www.mq.edu.au/__data/assets/pdf_file/0004/1182406/The-role-of-financial-literacy-when-paying-for-aged-care_FINAL.pdf
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  40. Department of Social Services. Financial Counselling Industry Funding Model, Discussion Paper. Canberra (AU); 2022. https://engage.dss.gov.au/wp-content/uploads/2022/11/Financial-Counselling-Industry-Funding-Model-Discussion-Paper-Final-DSS-Engage-1.pdf
  41. West R, Ramcharan P. The emerging role of Financial Counsellors in supporting Older Persons in financial hardship and with management of Consumer‐directed Care packages within Australia. Australian Journal of Social Issues. 2018;54(1):32-51.
  42. Brackertz N. I wish I’d known sooner. Swinburn University of Technology (Melbourne), editor: The Salvation Army; 2012.
  43. Financial Counselling Australia. About Financial Counselling: Financial Counselling Australia; 2023 [Available from: https://www.financialcounsellingaustralia.org.au/about-financial-counselling/#:~:text=Financial%20planners%2Fadvisers%20provide%20advice,to%20meet%20their%20ongoing%20expenses.]
  44. 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
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Financial Cost of Cancer
Financial Cost of Cancer
Financial Cost of Cancer Summary
Introduction
Policy context
Policy priorities
Future policy directions