Joey Lynch was just 16 years old when he was told he needed to raise about $800,000 to participate in a clinical triaxjmtzywl in the US or die.
As a teenager, the Melbourne resident was diagnosed with Hodgkin’s lymphoma, but despite undergoing two bone marrow transplants, chemotherapy and radiotherapy, his cancer wasn’t responding to treatment.
After exhausting all available options in Australia, his parents remortgaged the family home and his friends and community rallied to raise the money so he could travel overseas and participate in a stem cell transplant therapy clinical trial at the University of Pennsylvania.
Even after 14 years, Mr Lynch, now 30, still needs regular treatment.
He told NCA NewsWire it was a “difficult” and “very confronting situation” to suddenly need to source such a large amount of money for his life.
“There are duelling emotions involved, with incredible amounts of gratitude and a little bit of guilt and shame. You begin to see yourself as a bit of a burden,” Mr Lynch said.
“It’s something I believe every young cancer patient goes through, and whilst the crowd-funding campaign was a necessity and gave (me) predominantly a feeling of gratitude, it did carry those other emotions as well.
“I knew the potential benefits the trial carried, so I was more than happy to confront the risks that came with that, which I imagine a lot of young people would generally take to in those circumstances.”
For many cancer patients aged 15 to 25, they are either too old for Australia’s children's clinical trials or too young to join adult trials.
The Covid-19 pandemic has also made it harder for immunosuppressed people to travel.
Now as a Canteen board director, Mr Lynch and the cancer charity are hoping to raise $500,000 to kickstart more clinical trials in Australia.
He said clinical trials were of “critical importance” because it meant “the difference between life or death” for many people.
“It not only represents another avenue to continue a person’s cancer journey and their efforts to recover, but it also represents hope to one day put their cancer behind them,” Mr Lynch said.
“Clinical trials offer an opportunity for a young person to go to university, find a job, to figure out who they are, find a partner and do all of those things people take for granted.”
Canteen chief executive Peter Orchard said young people didn’t have access to potentially lifesaving clinical trials because of the high financial cost, long distance travel to access treatment or they were not available for their age group in Australia.
“Often young people are experiencing adult cancers and yet they are being treated in a children’s hospital, so there will not be clinical trials for that type of cancer,” he said.
“Then when they enter the adult hospital system the trials there are really targeting breast cancer or bowel cancer, not the rarer types of cancer that adolescent and young adult patients experience.”
He said the $500,000 hopefully raised would help get one new clinical trial off the ground as well as raise awareness.
“Canteen will continue to raise funds and advocate for clinical trials as long as young people need access to new treatment options for deadly youth cancers such as brain cancer, sarcoma and leukaemia.”
Cancer is the leading form of death by disease for young people aged 16 to 24.
About 1100 Australians aged 15 to 25 are diagnosed with cancer each year, and 150 of them die.
The fundraising campaign will run until March 18.
To donate, visit the Canteen website.
