New PBS listing gives eligible patients with IDH-mutant brain tumours access to Voranigo

For people living with an IDH-mutant astrocytoma or oligodendroglioma, a rare and incurable brain cancer, an important milestone has been reached.

Voranigo® (Vorasidenib) has now been listed on the Pharmaceutical Benefits Scheme (PBS), giving eligible patients access to the first new targeted treatment for these tumour types in more than two decades.

The PBS listing dramatically reduces the cost of treatment for eligible patients, from $28,000 to no more than $25 per script, and provides clinicians with another option to help slow tumour growth, potentially delaying the need for radiotherapy and chemotherapy while preserving quality of life.

For Victorian mother Leah Ferguson, the announcement represents much more than access to a medicine.

Leah was diagnosed with a grade 2 IDH-mutant astrocytoma shortly after the birth of her daughter, Lulu. What should have been a joyful time of new motherhood was suddenly filled with decisions no parent expects to face—brain surgery, treatment options and uncertainty about the future.

Following surgery, a small section of tumour had to be left behind because it was too dangerous to remove completely. Leah was then faced with choosing between radiotherapy, chemotherapy or compassionate access to Voranigo.

"I was really just searching for two things," Leah shared during Saturday's announcement.

"One was more time with my daughter. And the other was quality of that time as well."

Leah explained that access to Voranigo allowed her to focus less on the uncertainty of living with an incurable brain tumour and more on making memories with her family.

"I actually get to just spend time with my daughter and make a life with my family."

The Neurosurgical Research Foundation was proud to stand alongside our colleagues in the Australian Brain Tumour Collaborative for this significant announcement. It represents the power of collaboration between researchers, clinicians, advocates, governments and, most importantly, patients who courageously share their stories.

This achievement was many years in the making and we are grateful to Servier Australia for their ongoing support and advocacy to make this possible. A special thank you to Leah for sharing her story — a powerful reminder of why continued research and collaboration are so vital, and the many patients and families who generously shared their time and lived experience to support this process.

While Voranigo is not suitable for every brain tumour diagnosis, this PBS listing is an important step forward for eligible patients diagnosed with IDH-mutant astrocytoma or oligodendroglioma and shows the power and impact of research, collaboration and advocacy.

The subsidised treatment is eligible to adults and adolescents aged 12 years and older who have not previously received systemic anti-cancer therapy or radiotherapy. If you would like to know whether Voranigo may be an appropriate treatment option for you or a loved one, please make an appointment to discuss your individual circumstances with your treating doctor.