Mary, Joyce and Mishy, QLD

We need greater awareness of VHL, better education for healthcare professionals, and up-to-date resources to guide patients through diagnosis and care.

I was in my late twenties when I first realised something wasn’t right. I began experiencing numbness in my back, and after months of tests and uncertainty, doctors discovered a cluster of tumours in my spine. That’s when I was diagnosed with VHL.

I hope that Belzutifan will be easily accessible in Australia soon because if it does not, it would mean that eventually, my family would have to permanently live in America so that my son Billy, who also has VHL, could take this medication as well when he would need it. 

I urge the Australian Government to place Belzutifan on the PBS. If we can minimise the tumour growth, if not reduce the size, that then reduces the chances of needing surgeries and that reduces the impacts of potentially more disabilities. I’m pretty stuffed as it is. I don’t really want to get any more.