NeuroEndocrine Cancer Australia is calling on our community to help improve the lives of VHL patients in Australia.
Von Hippel-Lindau disease (VHL) is a rare genetic form of neuroendocrine cancer in which tumours can grow in a patient’s brains, spines, eyes, ears, kidneys, adrenal glands, pancreas, and epididymis/broad ligaments.
Belzutifan, a proven effective medication available in the US and parts of the UK, is NOT accessible in Australia through the PBS, despite TGA approval and orphan drug classification. Affordability issues arise as Belzutifan costs $12,000 per month out of pocket.
We need the help of the Australian community to help place Belzutifan onto the PBS list. Please sign the petition below and help VHL patients in our community enjoy a better quality of life.
This petition is now closed, with 17,803 signatures we thank each and every person that promoted this petition and supported VHL patients by signing and sharing.
VHL Patients Advocating for Belzutifan
Read more about how VHL effects some of our neuroendocrine cancer patients, Ryan and Chris.
Unfortunately, at the age of 11, an MRI revealed I had multiple tumours along my spine and two years later at the age of 13 I had begun to experience symptoms.
When I was diagnosed at 19 and told I might very well be dead by 30 years, I lived as a victim of this condition for 13 years, now I am an empowered individual.
