Eamon Lynham collapses on the polished wooden floor of the family home he shares with his parents — mum Pam and dad Anthony, a respected surgeon and former politician.
Minutes earlier, the 27-year-old youngest of four Lynham sons was rinsing cups in the kitchen sink. It's a few days out from Christmas 2023. He has a loving girlfriend, a job in information technology he's passionate about, and in a week or so, he plans to start searching for an apartment to buy after saving enough for a deposit. Life is good.
But in the seconds it takes to walk from the kitchen to the dining room, where he slumps to the floor, Eamon's life — and that of his family — changes forever.
An ambulance is called, and he's taken to the Royal Brisbane and Women's Hospital (RBWH) — where his father spent so much of his surgical career. He fondly refers to it as "my hospital".
It's there, after scans and tests, Eamon is diagnosed with glioblastoma multiforme, the most common and aggressive type of brain cancer.
"The tumour was everywhere — down his spinal cord, through his brain," his father says, shaking his head.
Doctors tell Eamon and his family: "There's nothing we can do."
He's given months to live.
"That's when you start looking for clinical trials. That's all you've got," his father says.
"I even said to him: 'I'm not going to let you go, son, without giving it a good fight'.
"I got nowhere. Nowhere. In my head I still think: 'Is there more that could have been done?' Did I miss something?'"
'It's so hard, and it doesn't need to be'
Dr Lynham spent years as a maxillofacial surgeon, rebuilding the broken faces of people — mostly young men — injured by alcohol-induced rage.
In 2014, he entered state politics for the Australian Labor Party as the member for the north Brisbane seat of Stafford, to champion measures aimed at reducing alcohol-fuelled violence, serving in the Palaszczuk cabinet from 2015 until retiring from parliament in 2020.
The 64-year-old former researcher is known for getting things done.
But even he could not find a clinical trial for his son in time. Australia has no easy-to-navigate central site, or dedicated government office that assists patients, their families or doctors to locate every available human trial for a particular illness or disease and match people to suitable studies.
"Here's me, a consultant surgeon, with all my connections, with all my knowledge, a previous minister of the government … how tough was it? It was virtually impossible," Dr Lynham said.
"I thought to myself, if I'm having all this trouble, what hope does Mr and Mrs Smith at the Gold Coast have … if their son or daughter was ill?
"It's so hard, and it doesn't need to be hard."
At the same time, Dr Lynham says, many Australian researchers are struggling to recruit patients to their studies.
When he finally found a clinical trial for his son, it was too late. His boy was too sick.
Eamon died at home on May 25 last year, his mother's birthday, five months after being diagnosed. He had just turned 28.
Photos and videos of the shy, young man with a quirky sense of humour play on repeat on an electronic photo frame in his parents' Brisbane home.
There are pictures of Eamon as a young boy with platinum blonde hair; of him with his three older brothers and parents; at weddings; on holidays; with his girlfriend; holding his baby nephew.
"Family is everything to us and Eamon was everything," Dr Lynham says.
The former Queensland MP smiles as he reminisces about the good-natured ribbing his three older sons — Brayton, Rohan and Sean — meted out over how spoilt Eamon was as the youngest.
Eamon lived with his parents and would often travel with them overseas.
"Parents tend to be a little bit better off when the youngest comes along and the youngest gets treated to better holidays than the oldest ever got," Dr Lynham says.
"We'd throw Eamon in a helicopter and the other boys never got a helicopter ride. We always copped grief over that."
The Lynham boys grew up on acreage at Chandler, in Brisbane's south-east, where Eamon had a pet goose named "Goose".
Goose would go swimming with the littlest Lynham, diving under the water together in the family's backyard pool. The goose would also often join them inside the house in the evenings.
"We'd be sitting there watching TV and the goose used to peck on the door and Eamon would go and get the goose, sit it on his lap and the goose used to sit there watching TV with him," Dr Lynham recalls, smiling at the memory.
"Unbelievable."
Calls for reform
As he braces for the 12-month anniversary of Eamon's death next month, the loss of his son is still raw for the respected doctor.
He admits he's overworking, continuing to operate as a surgeon part-time and attending meetings as a member of multiple boards to help him cope.
But the roadblocks he faced in trying to find a clinical trial for his son have also left him so incensed, he needed to do something about it.
Beyond his anguish, he's burning inside.
"I was feverish about this whole thing," Dr Lynham says.
He's gone public with his son's story hoping by throwing a spotlight on the issue, it may lead to change, particularly during a federal election campaign.
The medical specialist knows taking part in a clinical trial is unlikely to have saved his son, but Eamon "wanted to take a punt, he wanted to have a go".
"He couldn't care about the side effects," Dr Lynham says.
"He just wanted to have that chance."
It would have provided some hope, however fleeting.
In drug trials, participants are usually randomly allocated to receive the active drug or a placebo.
Patients have no guarantees they will be on the active arm of the trial, but research participants are generally monitored more closely than other patients.
The reality is, the main benefit in patients taking part in clinical trials is adding to existing medical knowledge, given only about 10 per cent of drug trials are successful. It's frequently a gift to the next generation of patients rather than the trial volunteers themselves.
But researcher Nigel McMillan, a professor of infectious disease and oncology at Griffith University, says amid the many failed drug studies are "remarkable success stories", citing the chronic myeloid leukaemia drug, Gleevec.
A trial into the drug more than 20 years ago had to be stopped halfway through when an overview board realised most of the patients on the treatment arm "were being cured".
"They stopped that trial early because it was unethical to continue giving people placebo when clearly the drug was working so well," Professor McMillan says.
"This is a drug we still use today."
As an internationally recognised cancer researcher, Professor McMillan receives regular emails from patients or their families wanting to know about clinical trials.
"People are desperate, of course, to know what's the latest and greatest," he says.
While he describes Australia as "a hub of clinical trials", he backs Dr Lynham's assessment of a fragmented system — divided between state and territory jurisdictions — in need of a huge overhaul, particularly in terms of improving patient access to research studies, no matter where they live.
"Every clinical trial in Australia has to be registered. We have that information. It's just not presented in a way that the public can easily get access to," Professor McMillan says.
Clinical trials can also face lengthy delays waiting for multiple ethics committee approvals, particularly if several hospitals or universities are involved, even within the same state. Individual hospitals and universities often require the approval of their own ethics committees.
Dr Lynham says answers to the problems are already available, articulated in "inquiry after inquiry" and report after report dating back more than a decade.
He says former Australian chief scientist Ian Chubb eloquently articulated solutions in a January 2023 consultation report into improving the clinical trial environment in Australia.
Professor Chubb says there's been "a lot of progress" towards the establishment of a national "one stop shop" for clinical trials and human research approvals since then.
The federal government included $18 million towards the design phase of a new national clinical trials platform in the 2024-25 budget.
"The one stop shop includes what we call a front door, a public access portal, which is being developed as we speak so that it's easy to use, it's intuitive and straight forward," Professor Chubb says.
The vision is that the website will be supported by a staffed office, likely to be within the federal health department. That is yet to be costed and funded, but Professor Chubb is hopeful, regardless of who wins the May 3 election.
Time to address 'lost opportunities'
Professor Chubb has himself benefited from taking part in a drug trial after being diagnosed with kidney cancer in 2015.
He was enrolled into a clinical trial for an experimental immunotherapy treatment after the cancer had spread to both lungs.
Without treatment, he was told at the time, he only had months to live.
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But here he is, years later, owing his life to medical science, the very thing he has spent a lifetime championing.
Professor Chubb says the vision for the national one stop shop is that it will be much more than a portal for patients and their doctors to access clinical trials.
He wants to streamline clinical trial approval processes so that trials can be assessed by one ethics committee, rather than several.
It's about patients being able to access experimental treatments sooner, including Australians living in regional areas through telehealth.
Melbourne-based cancer specialist John Zalcberg says it cannot happen soon enough, agreeing with Dr Lynham the existing system is "not fit for purpose".
"It's frustrating for people caught in this time warp when things aren't available," he says. "It's so important to patients that they are able to access clinical trials when they want them. They're a really important way to helping people without other options."
Professor Zalcberg, who divides his time between Alfred Health and Monash University, says if Professor Chubb can deliver on his vision, it will act as a magnet for more pharmaceutical companies to come to Australia to run clinical trials.
"In the end, companies develop drugs, not universities, not hospitals," he says.
"Companies are spending small fortunes trying to find ways of making sure that once they initiate a trial, they can actually recruit to it, and if they're going to test a new product, that they can do that in a way that's … timely and cost efficient."
Australia needs the national one stop shop to remain competitive in the clinical trial space, he says.
The University of Queensland Clinical Trials Centre director Nadine Foster says Professor Chubb's proposed reforms are "much needed" in Australia.
Professor Foster arrived in Australia more than four years ago from England, where she led clinical trials embedded in the National Health Service (NHS).
She says the NHS Be Part of Research Website is an international exemplar for matching patients to clinical trials.
"I think the Australian process that's being proposed through the national one stop shop and national clinical trial front door is learning from that overseas way of doing things," she says.
But she would like to see Australia go further.
"I think a lost opportunity at the moment is to not have linked that idea of a national portfolio of high-quality clinical trials to the accreditation of our hospitals in Australia," Professor Foster says.
"What it would do is really help hospitals and health care clinics decide, of all of the research we could be involved in, which ones are the real priorities, which ones are nationally important.
"They're often multi-centre, large trials that provide definitive evidence about what we do in health and medical care and for the first time, we could link that to the hospitals' accreditation process and, I believe, along with the national clinical trials front door, that type of approach would lead to greater change.
"I think that would be more transformational."
As Dr Lynham waits for Professor Chubb's vision to materialise, he continues to grieve for Eamon, the son "that everyone dreams to have".
"I never realised I could feel grief so deep as the passing of my son," he says.
