“It’s not just about being alive — it’s about quality of life.
Leah Ferguson
Leah Ferguson was facing a $27,000-a-month bill for the drug designed to slow the progression of her brain cancer.
And then the news came through that vorasidenib – the first new brain cancer drug in 20 years – received a positive recommendation for listing on the Pharmaceutical Benefits Scheme for the treatment of grade 2 IDH mutant glioma.
Once listed – subject to Cabinet approval later this year – the cost of the drug is expected to fall to around $30 per month.
“A weight I hadn’t even realised I was carrying was lifted,” Leah says.
“It’s not just about being alive — it’s about quality of life. This treatment has allowed me to avoid the more aggressive treatments of radiation and chemotherapy for now - which is a relief as they can have long-term negative impacts on your cognition.”
Leah was diagnosed with a type of IDH-mutant glioma (low grade brain tumour) in 2023, when her daughter was just a few months old, and underwent brain surgery six months later. She has been receiving vorasidenib free of charge through a compassionate access program for the past two years.
Clinical trial results have shown vorasidenib can delay tumour progression and postpone the need for radiation and chemotherapy. Brain Cancer Australia will commence a project this year to monitor the long-term impact of vorasidenib and better understand how the treatment performs in real-world settings, outside of clinical trials.
Leah is sharing her story so people can understand what life with brain cancer can really look like — and she’s raising funds for Brain Cancer Australia so others may have more options in the future.
This Saturday, Leah is hosting Bend for the Brain, a community event in Torquay that brings people together for a yoga session overlooking the ocean in support of brain cancer research and patient care.
“I just wanted to do my little bit,” she says. “Right now, I just feel so grateful to be alive. It’s not often that you face mortality at this age.”
You can read more of Leah’s remarkable story here. If you’d like to support her fundraising efforts, you can donate here.
