For young people like Madison, cancer costs more than their health

Brisbane university student Madison Purkis was just 19 years old when she began to experience bouts of severe back pain.

“There’d be a flare-up, and it would be pushing on my spine quite heavily,” she explains. “Those periods were just hellish.”

Purkis was studying in Canberra at the time, living on campus at the Australian National University and surviving on a shoestring budget.

As doctors and hospital staff dismissed her pain, she spent what little money she had on painkillers and numbing drugs.

“I had so many people tell me that it’s all in my head,” she says. “[The hospital] just gave me valium and sent me home continuously.”

Unable to afford to see a specialist, Purkis’ unexplained pain continued until her mum insisted on an appointment with the family’s GP.

“I got tests, got a CT scan, and within two days, I was in hospital with a biopsy, trying to work out what type of cancer I had,” she says.

“People often ask what it was like to receive the cancer diagnosis, and the weird thing was, it was relieving.”

Purkis was diagnosed with Ewing sarcoma – a rare and aggressive cancer that forms in bones or soft tissue – a month before her 20th birthday.

Because the cancer was enmeshed with her spine, she was unable to have surgery, and was instead treated with high doses of chemotherapy drugs.

“My fun fact is that I’ve had the lifetime dosage of three of the hardest chemotherapies available,” she says.

“They go very hard on this kind of cancer because there is just one treatment, and if the cancer grows resistant to that treatment in its reoccurrence, there’s nothing they can really do.”

Purkis spent a year living in Melbourne while receiving treatment. Accommodation was covered by the Sony Foundation, but she says the ongoing financial burden of her health has been a challenge over the past two years.

“The way I try to explain it is, the geriatric costs of medicine have been brought forward to my 20s, and normally at that stage of life, you would have retirement savings … but I’m woefully underprepared,” she said.

Research into the cost of cancer care in Queensland has found that a diagnosis between the age of 15 and 24 imposes a significant financial burden on the healthcare system, the cancer survivor, and their family. It is estimated patients contribute up to 26 per cent of total costs.

Out-of-pocket expenses have the greatest impact on young low-income earners, who are left with a higher risk of decreased life expectancy and poorer health outcomes.

An international figure of $33,000 in lifetime costs for cancer patients would be similar for young Australians, said Professor Jason D. Pole from the Queensland Digital Health Centre.

“In the first five years after diagnosis, there really is a serious income loss,” Pole said. “And there are a lot of costs associated with being sick.”

These are compounded for young people who might be studying or starting careers, he said.

“Our research [found] that even 10 years later, there are still financial deficits that people are dealing with.”

Purkis has channelled her health experience into a campaign for a medical crisis payment, like other government crisis payments.

It would target young people leaving hospital, a period that she says can lead to sudden financial distress as people transition back to their everyday lives.

“This payment will give young people access to the specialist appointments they require and preventive care, which will make a significant difference in the lives of those trying to rebuild their health and stability,” Purkis says in her campaign manifesto.

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