In May, Dylan had a seizure on his way home from work, which led to the heartbreaking discovery of a large brain tumour. Sadly, his father passed away from a similar tumour in 2019, making this diagnosis even tougher for the family.
Since then, Dylan hasn’t been able to work, and his wife has had to quit her job to care for him and their two young boys, Yves (5) and Benoit (4) . They had to turn to private surgery after waiting in the public system, and even with insurance, the costs have been overwhelming — from MRIs and specialist appointments to hospital fees and the anaesthetist bill.
On August 6th, Dylan had a six-hour surgery to remove the tumour. He’s now home recovering, and we’ve learned it was a Stage 2 Glioma.
The only available treatment for Dylan, is a phase 3 trial drug called Vorasidenib. While the Vorasidenib trial (Indigo Study) was very successful and the drug has received full Therapeutic Goods Association approval, it is not covered under the Pharmaceutical Benefit Scheme, and the cost is $27,000.00 per month. You do not take this drug in cycles, it is ongoing for as long as you stay well.
The financial burden of this is hard to fathom, but you should not have to put a price on life.