Sick Australians living in bush face refusing healthcare under inadequate patient travel subsidy schemes

Rural and remote Australians with cancer and other chronic conditions missing out on treatment due to inadequate travel subsidy schemes.

Sick people living in the bush are refusing healthcare, contemplating selling their homes or being forced to rely on charity under grossly inadequate patient travel subsidy schemes.

The policies make a lie of Medicare’s promise of providing universal access to free healthcare if you live in the country and have to travel to the city for healthcare.

The $41-$60 per night accommodation subsidy for a single person offered by the states won’t even cover the cost of a dog kennel which ranges between $49 and $85 a day.

“The situation is dire,” Can Assist executive director Emma Phillips said.

Can Assist is the largest cancer support network for rural and regional cancer patients in NSW and is urging the state government to increase subsidies.

A recent survey by Can Assist found four out of 5 cancer patients who travel long distances for treatment (and receive travel subsidies) also needed help from charities to cover their costs.

“We have no doubt that some people choose to skip treatment altogether,” Ms Phillips said.

“One patient said that without our support he would have had to sell his home to get treatment for a brain tumour, which involved scores of trips – thousands of kilometres – between Cootamundra and Sydney, and many weeks of accommodation while undergoing treatment,” she said.

A survey of subsidies in other states shows they too are equally inadequate.

The petrol subsidy is a ridiculously low 16 cents per kilometre in South Australia, 21 cents per kilometre in Victoria, 22 cents in NSW and 30 cents in Queensland – compared to the price of petrol which soared to more than $2 per litre this year.

In NSW the subsidy for accommodation is $43 for a single ($60 couple) per night when hotel prices in Sydney are around $150 to $200 per night.

In Victoria the subsidy is $41 per person per night, in Queensland $60 per person per night in Queensland and in South Australia $40 per person per night.

The costs quickly add up when multiple return car trips tally into thousands of kilometres a year and a patient needs to stay in a major city for up to six weeks or longer.

Tommy Gill with siblings Jacky, Charlotte and Clare. The family was nearly brought to ruin because of travel costs for Tommy’s cancer fight. Picture: Supplied

Each year, Can Assist provides around $1 million in financial support just for accommodation and travel expenses alone – but the gaps between the rebates and what patients have to pay are growing.

It says the complicated paperwork involved in claiming the subsidies in NSW is a nightmare with some patients having to make 200 kilometre trips to regional towns just to get a doctors signature on a form.

Rare Cancers Australia is calling for the subsidies in all states to be lifted to several hundred dollars per night to cover the true cost of travel to a major city.

And it says given this is a national issue and that often people travel interstate for healthcare in this year’s election campaign both major parties should consider introducing a national subsidy for patient travel.

It also wants the subsidies extended to people taking part in clinical trials in major cities, currently there are no subsidies at all for this type of travel.

“I would suspect that people certainly are skipping appointments,”  Rare Cancers Australia general manager Christine Cockburn said.

“Think about somebody that’s living on a low income in a regional or rural area and charge them huge amounts per night to attend a city facility, it’s really easy for people just to go without,” she said.

Cancer Council Queensland’s general manager advocacy James Farrell agreed the travel subsidies were inadequate.

“Sixty dollars a night in Queensland is one of the better rates, but it goes nowhere near meeting the needs of people travelling to major cities for their treatment and often leaves people in significant financial hardship,” he said.

“Research shows that there are cancer patients and people facing other life threatening conditions that do make decisions about the treatment they receive based on the costs that can include the direct medical costs, the out of pocket costs, or the associated costs for things like transport accommodation,” he said.

The Cancer Council was working with university researchers to better understand the financial hardship, the experience of people accessing patient travel subsidy and “we think there are potential improvements to be made to the system” Mr Farrell said.

PENSIONER: ‘IT’S JUST NOT FAIR’

Leonie James, a 59-year-old retired primary school teacher and pensioner from Leeton NSW, was is grateful to Can Assist tin helping her afford cancer treatment. Picture: Supplied

Leonie James, a 59-year-old retired primary school teacher from Leeton NSW thought she might have to refuse cancer treatment when she was told she had to travel to Melbourne.

The pensioner faced a $4,000 bill for out of pocket medical expenses for surgery in addition to $1,200 for a week’s accommodation and $1000 in food and transport costs.

When she required further treatment in Wagga Wagga last year she said had it not been for Can Assist and its purpose-built accommodation facility Lilier Lodge, “I literally would not have been able to afford access to treatment”.

Can Assist made it possible for Leonie to have surgery in Melbourne by paying her $1,200 accommodation cost when her IPTAAS accommodation subsidy of $360 fell way short of covering the bill.

“It’s just not fair. If you lived in Sydney you wouldn’t be going 500km away, you could get treatment at home and everything is an hour away,” she said.

She was left temporarily blind by her surgery, had a massively swollen face and was in pain.

“What upset me so much is you’re trying to juggle all of this, when what you really should be doing is resting and allowing your body to fight cancer, that’s what you’re supposed to be doing,” she said.

‘I CONSIDERED SELLING OUR HOME TO COVER TRAVEL COSTS’

Cootamundra resident Jon Anderson considered selling his house to pay for the travel and accommodation costs associated with his cancer treatment. Picture: Supplied

Jon Anderson would have had to sell his house to pay for the travel and accommodation costs associated with his cancer treatment without help from charity Can Assist.

Mr AndweDiagnosed with a brain tumour in early 2021. Over a 18 month period he underwent two separate surgeries and 6 weeks of radiotherapy in Sydney a 400km, four-hour drive from his home in Cootamundra.

He and his wife drove back and forth from Sydney 6 times for treatment – a total distance of 4800km – with one visit requiring a six-week stay in commercial accommodation whilst undergoing radiotherapy

After receiving the NSW patient travel subsidy rebate for accommodation Jon was still left $5000 out of pocket for accommodation and medical expenses

Can Assist reimbursed him the $5000, plus an additional $5000 to help with other expenses like petrol, parking and food.

Originally published as Sick Australians living in bush face refusing healthcare under inadequate patient travel subsidy schemes