Joey Lynch thinks he is an unlikely character for a cancer story. At 23 years of age, he is not a cute bald four-year-old sitting in a chemotherapy ward. Nor does he have breast cancer – one of the most lucrative diseases of all.
But Joey wants to live and he and his family face an awful predicament. After eight years of treatment for Hodgkin's Lymphoma, Joey has been told there are no other options for him in Australia aside from palliative chemotherapy to keep the cancer at bay for as long as his body can handle it.
Not willing to lie down, the Lower Templestowe man has found an early phase clinical trial in the US that offers a potentially curative treatment for his disease. There's just one problem. It will cost him $800,000 to travel to and participate in the University of Pennsylvania trial.
With a campaign now underway to see if he can raise the money, CanTeen Australia is concerned Joey's case is the tip of the iceberg for young people trying to get on to potentially life-saving clinical trials.
Peter Orchard, chief executive officer of the support group for people aged 12 to 24, is calling on the federal government to provide $4 million a year for research to benefit young people because there is currently a dearth of opportunities for them to get cutting edge treatments in Australia.
"If the funding was available, more clinical trials could be run in Australia meaning that young people like Joey wouldn't have to travel overseas and face astronomical bills," he said.
Every year, about 1000 young people aged 15 to 25 are diagnosed with cancer and 150 die from it. Compared to young children and older adults, survival rates can be significantly lower. Around half of the cancer types that affect young people still have five-year survival rates below 77 per cent, meaning 23 per cent do not live longer than five years.
Mr Orchard said there were a range of barriers to clinical trials for young people, including long human ethics research processes and the fact that they make a small number of people in the cancer community.
Joey, who works for CanTeen representing members in Victoria, said he believed people around his age were often overlooked.
"If you're thinking about cancer, you probably think about an old person at the end of their life … or it might sound really callous, but a four-year-old or five-year-old with no hair at Camp Quality. They probably make a better photo op than me, but there's still a lot of people like me hanging around," he said.
Tim Cahill donates Socceroo match fee to young man fighting cancer http://t.co/AYsu83Rdcu via @smh— Lou Sticca (@Lou_Sticca)
October 2, 2015
Joey, the son of Fairfax Media journalist Michael Lynch, has been unlucky. Not only was he diagnosed with a cancer uncommon for his age group, but he also failed to respond to treatments that most others find helpful. He has also suffered many complications, including Graft Versus Host Disease, which nearly took his life two years ago.
The one-time gym junkie who was lifting 250-kilogram weights at age 19, says he would like nothing more than to get back to a normal life where cancer is not his focus.
"I'd just like to go to uni and get a job," he said. "Cancer can be all-consuming."
In less than a week, Joey's campaign has raised more than $69,000, including $6000 from Socceroo Tim Cahill who donated his last match fee to the cause.
A spokesman for federal health minister Sussan Ley would not say if the government would provide CanTeen with the $4 million annual fund it is seeking. But he said a national research strategy was underway to identify key areas for further targeted research through the Government's Medical Research Future Fund.
To donate to Joey's fund, visit supportjoey.com.au
