Produced by Jennifer Dudgeon, Illustory
After hearing about their condition and the petition, I knew I had to help. Within 2 days we were filming and 4 days later we had the finished edit. Special thanks to these girls for letting me share their story.
Mary, Joyce and Mishy inherited a condition called Von Hippel-Lindau (VHL) syndrome. Each of them have tumours and cysts in their vital organs, with some that cannot be removed through surgery due to the risk of causing irreversible damage.
As these tumours grow, they can put pressure on organs and nerves, causing severe pain, permanent brain damage, paralysis, blindness and life-threatening complications.
A newly TGA approved oral drug called “Belzutifan” is now available, but costs Australians $12,000 per month. It has proven to be effective in controlling and shrinking kidney cancer, brain and spinal tumours and pancreatic tumors. Sign the petition to help get Belzutifan listed on the PBS so that Australians only have to pay up to $31.60 for this medication.
Petition: aph.gov.au/e-petitions/petition/EN6026
Belzutifan Clinical trial results: welireg.com/clinical-trial-results/
Belzutifan Clinical trial results: welireg.com/clinical-trial-results/
