Across Australia, as geographical isolation increases, cancer care is less accessible. According to the Australian Institute of Health and Welfare, the further from a metropolitan centre a person with cancer lives, the more likely they are to die within five years of diagnosis. For some cancers, those who live remotely are up to 300% more likely to die within five years of diagnosis.
In the second blog of our series, we outline some of the challenges for people who need to travel long distances for cancer treatment.
When we last caught up with Joe (59) from Swan Hill, he’d just been diagnosed with bowel cancer, and his specialist had suggested that he may need to spend a couple of months in Melbourne while he's undergoing treatment.
The Victorian Patient Travel Assistance Scheme (VPTAS) reimburses part of the costs of transport and accommodation for Victorians who need to travel more than 100 kilometres each way for treatment, or travel an average of 500 kilometres per week for a minimum of five consecutive weeks. Carers may also be eligible for reimbursement, if they accompany the patient whilst travelling and are deemed necessary by the approved medical specialist.
Assuming they meet the criteria, patients are eligible to be reimbursed 17 cents per kilometre if they travel for treatment by private car. Economy fares on public transport are fully reimbursed for the patient and an approved carer. Economy air travel will also be fully reimbursed for the patient and an approved carer if the journey exceeds 350 kilometres one way and a commercial flight is used to travel to the most appropriate approved medical specialist.
Swan Hill is 340 kilometres from Melbourne. This distance puts Joe just under the eligibility threshold to have VPTAS reimburse flights to and from Melbourne for treatment. He is considering travelling back and forth for treatment, leaving 5 am on Monday mornings for Melbourne, and doing the four hour drive home on Fridays after 5 pm. However, not only will this be expensive, it will also take a great deal of time and energy when he and Barbara are both already exhausted and stressed from the diagnosis, and all of the challenges it has raised. If Joe chose to drive to Melbourne (or have Barbara drive him) for treatment then he would be eligible for the 17 cents per kilometre reimbursement, since he would be travelling more than 100 kilometres each way.
Joe doesn’t have family or close friends in Melbourne and is concerned about how much it would cost him to stay in a motel four nights per week for a couple of months. Accommodation assistance is also available to those eligible for travel assistance, if the approved medical specialist states that it is necessary for the patient to stay close to the location at which they are receiving treatment. The patient and an approved carer are each eligible for a reimbursement of up to $35 per night (plus GST) for commercial accommodation.
Under the VPTAS Joe and Barbara would be eligible for the $35 reimbursement per night each for a motel if Joe’s doctor said that it was necessary for both of them to stay near the specialist treatment centre while he was undergoing treatment. However, they are struggling to find somewhere near the hospital that they could both stay for less than $150 per night, which means that they would have to pay significant accommodation costs upfront and that they would be out-of-pocket for $80 or more per night (assuming they both stay), even after reimbursement.
If Joe chose instead to stay with his son in North Geelong, for greater convenience and support, and to travel into Melbourne daily for treatment, he would be ineligible for transport or accommodation reimbursement, as he’d be only 90 kilometres from his specialist treatment centre and not staying in commercial accommodation.
Joe’s specialist has recommended that he participate in a clinical trial. However, as the VPTAS does not reimburse patients for transport and accommodation if they are receiving treatment through a clinical trial, Joe is unsure whether to follow his specialist’s advice.
Cancer Council Victoria has several concerns about the utility and effectiveness of the VPTAS for people affected by cancer, their carers and healthcare professionals. People affected by cancer report low awareness about patient travel assistance schemes and difficulties in claiming money for which they are eligible. Clinicians spend valuable time completing lengthy paperwork for the Victorian Department of Health so that patients can be reimbursed for part of their expenses through the VPTAS.
But it’s more than just an administrative burden. There are significant inequities built into the system—for example, a person with cancer who lives 95 kilometres from the nearest approved medical specialist services will often have the same needs as someone who lives more than 100 kilometres away, yet will not be eligible to claim for transport and accommodation support from the VPTAS.
From a national perspective, the Victorian scheme also lags behind some other states. For example, reimbursement for transport and accommodation in Victoria is just over half the amount that patients are eligible for in Queensland, where transport is reimbursed at 30 cents per kilometre and accommodation at the rate of $60 per night.
Added to this, no Australian jurisdiction provides reimbursement or a subsidy for transport or accommodation for patients involved in cancer clinical trials, despite clinical trials presenting significant benefits for participating patients and Victorian government support for clinical trial participation.
The ability for cancer patients to access quality care is critical; and the financial impact of having to travel long distances or spend long periods away from home can affect how some people make decisions about their cancer care: for some people, the cost burden associated with travelling for treatment may mean they defer or even forgo treatment.
Cancer Council Victoria is seeking a commitment from the Victorian Government to improve access to the VPTAS, and to ensure that the benefits available to Victorians affected by cancer are equal to those in other states. We’re interested in hearing about your experiences with, and suggestions for, improvement to the VPTAS, or other patient travel assistance schemes, whether you’re a person affected by cancer, a carer, healthcare professional, social worker, lawyer or anyone else with an interest in the area.