Future directions

1. Improve waiting time transparency for cancer-related treatments to support people to make informed decisions  

Impact of this issue

People with cancer need information on the waiting time to access treatment, in both the public and private sector and the potential impact on outcomes. The current situation of incomplete and opaque information on waiting times for treatment increases the risk of people making choices that result in suboptimal cancer outcomes and increased financial burden.¹

While state-based guidelines for hospital waitlist times exist, publicly available and comparable information is absent for cancer services across public and private healthcare. People report lengthy waitlist times to access cancer treatment in the public system, which pressures them to opt for treatment in a private setting, which incurs costs that could otherwise be avoided.² In the public health system, although surgical waitlist times are reported by the Australian Institute for Health and Welfare,³ there is no available data on the ‘hidden waitlist’ or time people wait to access a specialist outpatient appointments, which is required to start treatment.⁴  Some states and territories report this data but it is not consistent enough to be meaningfully compared.

Outcomes we’d like to see:

• A nationally standardised and publicly accessible waitlist reporting structure, across the public and private sector, that includes cancer treatment services and specialist outpatient services.

2. Implement funding models that provide value-based and quality care to people affected by cancer while reducing healthcare costs

There has been limited reform of the Australian healthcare system since the introduction of Medicare in 1984. Coupled with structural deficits in the Federal budget, there is growing interest in reforming the way we pay for healthcare, with a move towards person-centred care.⁵ Value-based healthcare models deliver outcomes that matter to people and have the potential to reduce health expenditure waste.⁶ The current fee-for-service, activity-based and block funding of healthcare does not incentivise or produce optimal health outcomes.⁵ Bundled payments and fee-for-performance models have been shown to have a positive impact on healthcare quality and patient outcomes.^{7, 8}

Outcomes we’d like to see:

• Federal, state and territory government commitment to explore and implement value-based funding models.
• Improved reporting of treatment costs and outcome data across the healthcare sector.
• Development of an implementation plan for trialling scalable value-based payments in cancer care.

3. Reduce out-of-pocket costs for people with ongoing and long-term treatment and management-related expenses

The cost of cancer can be a long-term financial concern for people living with metastatic disease or people requiring ongoing management. In these situations, the cost of cancer may decrease, but overall expenses are still higher than for someone who never experienced cancer. Long-term metastatic disease has higher associated costs compared to non-metastatic disease, including follow-up appointments, ongoing treatment, and longer periods of lost income due to reduced capacity to work. These long-term costs can be a barrier to people continuing treatment or impact on survivorship plans.

Outcomes we’d like to see:

• Models of care for people living with metastatic disease or survivorship phase that support optimal outcomes.
• Funding of models of care that reflect the costs associated with long-term treatment, management and recovery for childhood cancer survivors and metastatic disease.

4. Ensure people affected by cancer can access appropriate insurance without discrimination 

When accessing insurance policies, including travel and life insurance (i.e., death, permanent disability, trauma or critical illness and income protection) people with a diagnosis of cancer face additional barriers. Insurance policies are likely to be more expensive due to the underwriting process. Insurers assess the level of risk or likelihood of future claims based on data, including medical history. Insurers may request access to medical records, including histology, history of relapse or recurrence, remission length, treatment type, and current medications, before deciding whether to provide a policy. This unfairly impacts people affected by cancer as insurance companies may require higher insurance premiums, exclusions, or refuse to provide cover. People who have no experience of cancer, but have a family history and/or confirmed genetic predisposition to cancer, identified through genetic testing, may face similar discrimination in accessing insurance.

Australia’s disability discrimination legislation permits insurers to consider a cancer diagnosis or history of cancer when determining insurance policy eligibility, but this assessment must be supported by statistical or actuarial evidence.

Outcomes we’d like to see:

• Improved access to risk-rated insurance products for people affected by cancer.
• Improved understanding of insurance-related issues, rights and obligations for people affected by cancer.
• Improved training and insurance claim processes that reflect the needs of people affected by cancer.
• Legislative reform similar to the ‘right to be forgotten for cancer survivors’ law in the European Union.
• No genetic discrimination of people accessing insurance policies.

5. Improve the Pharmaceutical Benefits Schedule Safety Net co-payment structure 

People may experience out-of-pocket costs to access cancer medicines. The cost of prescription medicines is subsidised by the Pharmaceutical Benefits Schedule (PBS) and a tiered payment system enables concession card holders to pay smaller co-payment fees.⁹ However, for low-income households that are above the concession threshold, co-payment costs can be substantial and lead to financial toxicity.

Another financial burden is the PBS Safety Net record-keeping requirements and threshold for cumulative out-of-pocket costs. When the Safety Net threshold is reached a person can purchase medicines at a cheaper price through co-payment arrangements or access medicines free of charge for the rest of the year. However, for people without a concession card, the threshold is nearly six times higher than for concession card holders.⁹

Outcomes we’d like to see:

• Implementation of a PBS Safety Net system and payment model that supports low-income households who experience significant out-of-pocket costs for medicines.
• Improved processes for Safety Net expenditure tracking that removes the need for individuals to document and maintain records.

6. Reform social security programs and income support for people affected by cancer

Our immediate and short-term policy priorities are focused on improving Services Australia’s ability to deliver support for people affected by cancer to access social security programs and income support. However, there are calls for broader improvement and reform of Australia’s social security system programs and payments.¹⁰ Before April 2021,¹⁰  the payment rate of JobSeeker (previously Newstart Allowance), had not been substantially increased since 1994.¹¹ People with cancer report difficulties obtaining the higher-paid DSP; and are only able to access JobSeeker. Without policy and legislative reform, people affected by cancer will continue to experience significant medical and living expenses, and a reduced capacity to work, which impacts their ability to complete treatment. Income support payments should be increased to ensure low-paid and unemployed people can access a basic standard of living.

Outcomes we’d like to see:

• Review and reform the range of social security programs and income support eligibility, administrative and compliance requirements to better reflect the circumstances and needs of people with cancer.
• A considerable increase in income support payments to ensure a minimum standard of living.