The financial cost of a cancer diagnosis leaves many patients in poverty
Updated August 15, 2019 16:50:45
When Jane was diagnosed with bowel cancer 12 months ago she knew the physical and mental toll would be enormous.
But it was the financial cost that scared her the most. “Getting sick with cancer is financially devastating,” she says. “My original thought wasn’t that I might die from cancer. It was, ‘How am I going to be able to pay my rent and bills?’.”
Jane found the financial stress caused by her illness was as big a burden as the cancer itself.
“No bank will loan you money because they don’t know if you can pay it back. Financially, cancer destroys you,” she says.
“You can accept that you have cancer because health professionals can help you with that. But when it comes to finances you’re on your own.”
Australia’s healthcare system is lauded as among the world’s best, but for people living with cancer, a diagnosis doesn’t just have an emotional impact.
A handful of previous Australian studies have demonstrated the large out-of-pocket costs some patients bear, but the depth of the financial burden it causes is not well known.
Jane, 60, used all of her savings, topped up by loans from friends, to survive. She also withdrew $5,000 from her superannuation balance just to pay the rent.
“I tell people I’m a vegetarian because I can’t afford to buy meat. I can’t do any of the things I used to do, like go out for dinner,” she says
But Jane’s financial hardship goes even further.
Some weeks Jane resorts to shoplifting: “I pretend to scan food and vitamins at the self-serve checkout,” she says.
What about Medicare?
While a range of cancer treatments are covered by Medicare, the public healthcare system has its limitations.
Our study found this can be a shock to cancer patients and their loved ones. Our research suggests one in three respondents had out-of-pocket costs that were higher than expected and ranged from hundreds of dollars to over $50,000.
Patients from rural areas had to factor in time to travel to and from oncology appointments which impacted on paid work and became financially taxing.
For some, attending treatment meant leaving their job altogether.
Another bowel cancer patient said he hadn’t worked since beginning treatment 11 months ago.
His savings are gone and he risks losing his home because the family can’t afford to pay the mortgage.
About a third (35 per cent) of our participants told us they needed extra financial support from their family or friends.
Some then felt the additional weight of being unable to repay this generosity as cancer-related costs piled up.
Others say they have “no choice” but to return to work while still undergoing treatment.
One man told us he was struggling physically and mentally to do his job. He is on pain killers, has side-effects from chemotherapy and isn’t sleeping. This man isn’t well enough to be back at work but he has no other way to pay the bills.
Access to treatment is a huge cost for those in rural and remote locations.
These patients often must travel to a larger hospital, and then face accommodation costs to stay nearby after treatment. This is on top of the emotional cost of being away from family and carers.
A cancer diagnosis is particularly challenging for those aged over 50.
Earlier research suggests over-50s may struggle to return to work after time off for treatment. At this stage of life people have reduced opportunity to recover from the effects of large, unexpected, out-of-pocket costs combined with long periods of lost wages.
Can private health insurance help?
A surprising finding was that those with private health insurance faced double the out-of-pocket expenses as those without it, and ultimately a greater financial impact.
Privately insured patients may be charged not only the private health insurance excess and the gap between coverage and a surgeon’s bill, but also costs associated with anaesthetic, diagnostic procedures or hospital stays.
Many of these costs are covered by Medicare when a patient is treated in the public system.
Financial toll does not discriminate
As we listen to patients it is becoming clear that cancer’s financial toll can happen to almost anyone.
More than 90 per cent of those who reported financial difficulties — such as problems paying for food or utilities — did not have these financial problems before their diagnosis.
Sometimes partners of patients need to quit their jobs to become full-time carers.
Rosemary is one. She left her job in order to access her superannuation to pay the $35,000 out-of-pocket costs of her husband’s prostate cancer treatment through the private system.
She applied to Centrelink for a carer’s allowance but was signed up for Newstart. But this benefit is not appropriate for people with chronic conditions, and their carers.
Rosemary, 62, had to apply for 10 jobs per fortnight in order to fulfil the requirements of Newstart.
She was also required to complete courses in alcohol service and coffee making. But as a resident of a small rural town, Rosemary had to travel 57 kilometres each way to complete the training.
The petrol cost, as well as the time away from her sick husband, left her feeling humiliated.
As someone who had worked and paid taxes all her life, Rosemary felt abandoned by the government, and treated as someone who didn’t want to work, when what she really needed was support.
“Centrelink haven’t thought about people with cancer and their families,” Rosemary says. “You’re made to jump through hoops for a tiny amount of money. The hardest part is trying to make ends meet.”
Where to next?
Better information is crucial.
Cancer Council Australia wants patients to be told early on the costs they are likely to incur, so they are not surprised by the size of their bills.
This work needs broad support from individual doctors, along with hospitals and health services.
Helping patients choose the right doctor, and access public services — not just private ones — also needs to be improved. Many people believe the most expensive doctor must be the best, despite a lack of evidence for that idea.
Even when help comes, it can be slow arriving
Our healthcare safety net is not efficient in helping people with diseases like cancer, which can be debilitating but also unpredictable.
The research supports the concept of a rapid-access, cancer-specific financial support package for patients. This should be supported by giving family members access to a carer’s allowance when needed.
One study participant said Centrelink denied support because they could not answer this impossible question: “When will you be better, or when will the cancer be gone?”
A carer told us: “My husband was in hospital… The first question Centrelink asked me was ‘Is he terminal?’
“At that time, I didn’t know, and if you can’t answer they don’t want to help you. I waited four months to receive a Centrelink payment after the application, I had to provide so much paperwork and we lived quite a distance from the office.”
Even those with private insurance cannot always be assured of a financial safety net: “I had to wait 90 days for my income-protection insurance… so at the time you most need it, it is just not there.”
Professor Christine Paul and Dr Liz Fradgley work at the Hunter Medical Research Institute within the Hunter Cancer Research Alliance.
First posted August 15, 2019 06:00:45