As if a cancer diagnosis isn’t enough on its own, patients can suffer financial hardship as well.
While Medicare, the PBS or private insurance may cover many of the medical expenses, there can be significant out-of-pocket costs to pay on top. Even premium-level private health insurance cover may not be enough.
In the case of rare cancers, the situation can be even more difficult. This is because clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases may not have been carried out, and medications for the cancer may not be funded.
Extra costs and loss of income
The Cancer Council says out-of-pocket costs can arise in a number of areas. This includes GP and specialist gaps, scans not covered by Medicare, over-the-counter medications, special appliances or devices, travel, accommodation and parking, and the need for personal care while on treatments.
People living with cancer may also find they are unable to work, due to high levels of fatigue, side effects from medication or just not feeling well.
As a result, cancer patients may lose income at a time when they are also facing additional costs. In some cases, partners may need to quit work to take over care duties, resulting in further losses.
Determining costs upfront
If you are facing treatment for cancer, it’s important to become as informed as possible early on about the costs. Knowing what is and isn’t covered upfront can help you avoid financial shocks and better manage your expenses.
Ask your health professional about their fees, any out-of-pocket costs, whether equally effective but less costly treatments are available, and whether costs are negotiable. If you have private cover, you might want to look at whether it would be more cost-effective to be treated as a public patient.
It’s a good idea to get a written estimate of costs upfront, preferably in itemised form.
You might also want to ask whether you can arrange a payment plan to help even-out the costs.
Real world experiences of financial toxicity
The Patient Support Team at Rare Cancers Australia regularly fields enquiries about covering out-of-pocket costs associated with cancer treatment. Many people also struggle to pay bills, buy groceries, cover the mortgage/ rent and childcare/school fees, and are forced to rely on support from family and loved ones. Those without a generous support network seek assistance from emergency relief services. Crowdfunding has also become increasingly used where patients and carers do not have the money to cover all of the costs incurred due to a cancer diagnosis.
For some patients, out-of-pocket medical costs can run into thousands every month, as a patient explains on Facebook.
“I know 3 people right now who are personally out-of-pocket $5,000-$10,000 each month for their treatment. Such an expensive swipe on the EFTPOS machine at the chemist each month!! Regarding broader expenses… imaging appointments, other medications and loss of income due to cancer. I stopped counting a few years ago. There were way too many zeros on that number (too depressing to tally up),” says Sarah.
For Lesley, the financial toll of a cancer diagnosis was the closure of her business as her health declined.
“I have lost my income totally. I needed to close my business as my health decreased. I require more medication and closer appointments with my specialists.”
Another patient, Deb, describes having to “roll with it” when her employment situation exploded.
“I was off sick for two years. Then went back part-time to build up to where I had been. Then I got made redundant.”
Where to get support
Being diagnosed with cancer and having to cover out-of-pocket costs as well as potentially not being able to work can have severe financial consequences. There is support available. Here is a good place to start:
Rare Cancers Australia – our organisation supports patients, carers and families affected by a rare and less common cancer diagnosis – because no one should have to go through their cancer journey alone. We can help you with practical, financial and emotional support, assistance with clinical navigation, fundraising and support groups and peer connections. If you’d like more information, call us on 1800 257 600 or contact us by online message.
Cancer Council – offers services in financial counselling, covering access to superannuation, insurance claims/disputes, debt management, employment issues, disruption to small businesses and preparing wills. These services are offered free of charge to people who are unable to pay for them. Contact on 13 11 20.
Centrelink – if you are living with cancer or caring for someone who is, you may be able to get financial support at this time. One way to find out is to go to Services Australia and check out what payments and support services could be available for you. Another is to go into your local Centrelink office and ask to speak to a social worker to discuss your situation.