Funding treatment costs

How does the Pharmaceutical Benefits Scheme work and where are the gaps?

The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of many medicines in Australia. For PBS-listed medicines, you pay a standard co-payment, currently less than $50 for most people and less than $10 for concession card holders. The government covers the rest.

PBS listing is specific. A medicine may be listed for one condition or one line of treatment but not another. A drug that is standard of care elsewhere in the world may not yet be listed on the PBS in Australia, or may be listed only under restricted criteria.

When a drug is not PBS-listed for your specific situation, the full cost falls to you or your private health fund. For newer therapies, this can be tens of thousands of dollars per treatment cycle. This is a real and common situation, and it is worth knowing what your options are before concluding it is out of reach.

What are compassionate access programs for medications?

Pharmaceutical companies often provide access to drugs that are not yet PBS-listed, or are listed under criteria you do not meet, through compassionate access or expanded access programs. These programs exist because companies want to support patients with serious illness and because real-world access data is valuable for regulatory approval.

Under a compassionate access arrangement, the drug may be provided at no cost or at significantly reduced cost for a defined period. Your specialist applies to the company on your behalf. You are not expected to manage this process yourself.

Not all drugs have compassionate access programs. Availability depends on the company, the drug, and the stage of regulatory approval. Your specialist, or a specialist pharmacist at your treating hospital, will know whether a program exists for a drug being considered in your case.

Ask specifically: "Is there a compassionate access or expanded access program for this treatment, and if so, can you apply on my behalf?"

How can a hospital social worker help with treatment costs?

Every major hospital has a social work team, and social workers in oncology and palliative care settings are specialists in exactly this kind of navigation. They know which financial assistance programs exist, which ones have current funding, how to apply, and what the realistic eligibility criteria are.

If you are not already connected with a hospital social worker, ask your treating team to refer you. This is a standard part of care, not an add-on for people in financial difficulty. Anyone navigating a serious illness with significant costs benefits from this support.

A social worker can also help with broader financial stress: housing costs, transport to appointments, utility bills, and applying for Centrelink payments. See the Centrelink guide for more on the payments available during this period.

What financial assistance programs are available?

Several organisations provide direct financial assistance to people with serious illness in Australia. Eligibility criteria, available amounts, and funding levels change regularly, so the following is a starting point for investigation rather than a definitive list.

The Cancer Council operates a financial assistance program for people with a cancer diagnosis. This is one of the more widely known programs and operates in every state and territory. Contact your state Cancer Council or visit cancercouncil.com.au to find the financial assistance section.

The Leukaemia Foundation, Myeloma Australia, and other condition-specific organisations may have their own financial support programs. If your diagnosis is covered by a specific peak body, it is worth contacting them directly.

State and territory governments also operate hardship programs and one-off grants for people in serious need. Services Australia (servicesaustralia.gov.au) lists income support and supplement payments available to people who are seriously ill or caring for someone who is. Your hospital social worker will know what else is currently available in your state.

Private health funds sometimes have hardship provisions or can waive or defer excess payments in specific circumstances. Contact your fund and ask directly what options exist.

Can I access my superannuation early to fund treatment?

You may be eligible to access your superannuation early on compassionate grounds if you need it to pay for treatment that is not available through the public health system and that you cannot otherwise afford. This is assessed by the Australian Taxation Office (ATO).

The criteria are specific and the application process requires medical evidence from two treating doctors, one of whom must be a specialist. The amount you can access is limited to what is needed to cover the treatment cost and associated expenses.

Accessing super early has long-term implications for your retirement balance and may have tax consequences. This decision is worth discussing with a financial adviser before proceeding. See the superannuation guide for more detail on this and other options.

Is crowdfunding a realistic option?

Crowdfunding platforms like GoFundMe are used by some families to raise money for treatment costs that are not otherwise covered. This approach can work, but it is worth going in with a clear understanding of what to expect.

Crowdfunding requires public disclosure of your health situation and financial circumstances. Many people are comfortable with this, but it is worth thinking through before starting a campaign. It also requires significant effort to set up, promote, and maintain. It works best when there is someone willing to manage it on your behalf rather than when it falls to the person who is unwell.

The amounts raised vary enormously and are rarely predictable. Campaigns with a clear story, regular updates, and a strong social network to share them tend to perform better than those without those elements.

Crowdfunding is best treated as one source of support among several, not a primary strategy. Pursue assistance programs, compassionate access, and Centrelink entitlements first. If crowdfunding helps cover remaining gaps, that is a reasonable use of it.

What does private health insurance actually cover?

If you have private health insurance, contact your fund early to understand exactly what is covered under your policy. Cover for specific treatments, drugs, and hospital stays varies significantly between funds and policies.

Ask your fund specifically whether the treatment being proposed is covered, whether there are waiting periods that apply, and what the out-of-pocket gap will be. Get this in writing if possible. Do not rely on a general summary of your cover, which may not reflect recent changes or the specifics of your situation.

Some treatments are only available through specific hospitals or under specific billing arrangements. Your specialist's billing coordinator can advise on what to expect before treatment begins.