Since he was diagnosed with cancer in the middle of the year, Tim Hurley has been relying on the support of family and friends to get him to hospital five times a week.
They’ve also brought him meals and helped cover the cost of medication and other essentials.
While Hurley has nothing but praise for the health system, he said Australia’s welfare system was not equipped to support people like him.
“We’re blessed with the medical system we have in Australia,” he said. “It’s just that Centrelink needs an update.”
Hurley is one of the more than 7,000 people in Australia who are living on the $45-a-day jobseeker payment, despite the government acknowledging their work capacity is limited due to a cancer diagnosis.
Hurley is exempt from mutual obligations such as looking for work, but there’s no financial acknowledgement that he’s too sick to work enough to make a decent income.
And that he will be for some time.
Instead, there is only the jobseeker payment, which is well below the poverty line and $338-a-fortnight less than the disability support pension.
“I’m definitely not a jobseeker right now,” Hurley, 55, said. “It’s kind of insulting to just be struggling so hard. I’ve been a sole trader and an entertainer that’s paid taxes nearly all my life.
“I worked hard for this country … [It] just feels like an added burden when you’ve got something like this.”
Guardian Australia revealed in October that the Cancer Council was concerned the low rate of the jobseeker payment and the strict eligibility criteria for the disability pension meant thousands of cancer sufferers were battling cancer while in poverty.
The Australian Medical Association has now joined those who have raised concerns about the welfare system’s failure to support those with cancer – as well as people with other temporary illnesses.
“At the moment the system is just very unsupportive for them (people with cancer),” said Richard Kidd, the chair of the Australian Medical Association Council of General Practice.
I had a bit of a cry to one of the nurses in the hospital yesterday about the intensity
Advocates have offered various options to solve the problem. Most say lifting the jobseeker payment to the poverty line would ensure those with temporary illnesses – as well as others out of work – would be adequately supported.
Others say a specific payment – paid at the rate of the disability support pension – could be provided on a temporary basis until a person had recovered and was able to work again.
Another suggestion is to ease the eligibility for the disability support pension, particularly the requirement that a condition is “fully diagnosed, fully treated and fully stabilised”.
As written, the requirement rules out many people unable to work due to temporary illnesses, such as cancer, and also makes it harder for those with chronic illnesses, degenerative conditions and mental health conditions to obtain the pension.
In a submission to an ongoing review of the disability support pension, the AMA said “defining ‘stabilised’ is problematic when the patient may experience impairment that is progressive, episodic or fluctuating”.
Kidd said the rules needed to be clearer. He said they affect people with mental ill health, those with degenerative diseases, as well as those battling cancer, who find it harder to get on to the pension as a result.
The AMA said one option would be to specify that a condition must only be “fully treated for current stage of [the] disease/condition”.
Kidd said those with cancer were left without adequate support. “[Jobseeker] is not as much as disability support pension,” Kidd said. “For someone who is undergoing cancer treatment, their requirements in terms of costs of medical treatment, costs of accessing it, are probably a lot higher than people who are already on a disability support pension.
“That highlights not only a problem with the [impairment] tables but also, at the higher level, access and equity for people who have got really serious, life threatening conditions.
“The treatment may not be stabilised and the person’s diagnosis may not be stabilised but they really need an awful lot of help. The system at the moment is not really providing it.”
Despite the Cancer Council’s concerns, the government is yet to say it sees a problem. Last month, the social services minister, Anne Ruston, was quizzed about what the Greens senator Janet Rice described as “gaping hole in the policy framework”.
Asked if the government was going to leave [people with cancer on jobseeker] languishing in poverty, Ruston told Senate Estimates: “I reject the premise of what you’re saying.
“The social security system, in conjunction with the healthcare system in Australia, is designed to support Australians through difficult situations,” she said. “Of course, it’s there when people find themselves eminently in need of support.
“When people’s illnesses are long-term such that they meet the requirements of the disability impairment tables, of course, they have the opportunity [to get the pension],” Ruston added.
Hurley’s work as an entertainer dried up with the pandemic, forcing him to apply for jobseeker payment. Then, in June, he was diagnosed with lymphatic cancer.
Last week, he finished a course of radiotherapy that meant he needed to travel from his Castlemaine home to Bendigo hospital, about 40 minutes away. He said he was lucky that a friend or family member was able to drive him each day.
While his treatment and most of his scans have been covered by Medicare, one Pet scan cost him $650, he said.
The treatment has been “intense” and “quite emotionally scary”, while the chemotherapy tablets have “some pretty intense side-effects”.
“I had a bit of a cry to one of the nurses in the hospital yesterday about the intensity … the pain and ongoing discomfort and everything,” Hurley said. “I don’t even know if I’m going to make it or not.”
Last week, Hurley did his first gig since finishing treatment. It went for two hours, and he did it, he said, because the jobseeker payment was not sufficient to cover his living costs.
He’d prefer to be recovering, and says the show was painful at times, but he managed OK.
Hurley thinks the idea of a payment for people with temporary illnesses, like cancer, would be a good idea.
“They need something to help people like me that fall in between,” he said. “Life’s complicated and the Centrelink system doesn’t seem to reflect that.”
Do you have a story? firstname.lastname@example.org