When Hugh Boon was diagnosed with stage 4 cancer in December he was given six months to live but a program linking the regional Queenslander with a trial in the city is giving him hope.
"It's shrunk the tumour down a little bit," Mr Boon said.
"My muscles were wasting away, and now I've been on the treatment that seems to have stopped."
The 75-year-old was eligible for the trial as a rare gene mutation ruled out traditional methods of treatment such as chemotherapy.
"Only 3 per cent of people with my lung cancer have this gene," he said.
"If I didn't have this gene, I wouldn't be able to go on this trial.
"I just think I'm very lucky."
Teletrial connects remote patients
Townsville-based Mr Boon accessed the clinical trial in Brisbane's Princess Alexandra Hospital — more than 1,300 kilometres away — through the Australian Teletrial Program (ATP).
The ATP connects rural and regional patients with metropolitan doctors who are facilitating clinical trials for diseases, including cancer.
The model was first piloted in North Queensland in 2018 and has since been rolled out nationally.
Mr Boon is among 66 rural and regional Queenslanders who are part of over a dozen trials they may not have otherwise been part of.
But once part of a trial, the tyranny of distance can still be a challenge for rural and regional patients.
Mr Boon travels to the Brisbane hospital each month to collect his medication — 11 tablets that he must take daily.
"It's a bit of an ordeal … the travel is just a nuisance," he said.
"It's a bit traumatic going down there."
It would save Mr Boon time, money and energy if he could receive his medication closer to home.
"Emotionally, it would be better," he said.
"Financially, it would be better because I wouldn't have to pay for flights and hotels.
"It's expensive. I don't know how it would be [possible] for anyone who couldn't afford to travel."
In a statement, a spokesperson for the Princess Alexandra Hospital said ethics approval and contract changes were required for a patient to collect medication from another hospital.
The hospital was "actively working" to support Mr Boon through this process, the spokesperson said.
There was no cost to patients participating in the trial but access was self-funded, they said.
Equity of health care
The president-elect of the Clinical Oncology Society of Australia, Sabe Sabesan, says there is a disparity between patients in cities and patients from regional and remote areas.
Professor Sabesan said Mr Boon should not have to travel to Brisbane to collect his medication and he should be able to take part in the trial through his local hospital.
"[Mr Boon] shouldn't even be travelling," Professor Sabesan said.
The senior medical oncologist helped design the teletrial model.
To improve accessibility to the model, he said a more "networked approach" needed to be implemented in hospitals across the country.
"If we make teletrials a standard business — or routine expectation — of the health system as part of health equity, then the rural sites, or regional site doctors, will have to connect to larger centres," Professor Sabesan said.
He is advocating for greater awareness of clinical cancer trials and the ATP.
"At the moment, if the patients and the doctors or clinicians don't know about the trial, they simply miss out," Professor Sabesan said.
He says missing out is unacceptable, given that clinical trials "improve health outcomes".
"In cancer care, it's internationally recommended that every patient should be offered clinical trials as the first option [of treatment]," Professor Sabesan said.
"But that means it needs to be offered to all patients in Australia, including regional, rural and Indigenous Australians."
Health reform needed: ATP director
Director of ATP Kaye Hewson says the aim of the program is to limit the amount of travel required by patients as much as possible.
She says "large organisational change across the health system" is needed.
"We're working through with the different hospital and health services and primary health care," Ms Hewson said.
"[We] try and build in systems so that they feel supported to be able to deliver a clinical trial at a regional rural or remote site."
The ATP also helps to coordinate clinical trials for respiratory diseases, neurology conditions, palliative care, burns, and motor neuron disease.
"We're also hoping to expand into mental health and aged care," Ms Hewson said.
For Mr Boon, he plans to continue with the clinical trial because the benefits outweigh the travel costs.
"My health is definitely better," he said.
"I mow my lawn [again] … the medication has definitely helped. I'm just lucky.
"If I was a poor person living in a more remote area … they might just give you the standard treatment, and it would do no good, and you just die — and maybe not die in a very nice way."
