Media Coverage Highlights VHL Awareness and Equity in Cancer Care
NeuroEndocrine Cancer Australia (NECA) is thrilled to see national media coverage spotlighting Von Hippel-Lindau (VHL) syndrome and the life-changing impact of Belzutifan’s listing on the Pharmaceutical Benefits Scheme (PBS). The article, “Cancer that killed Dad, won’t get me”, which was syndicated across Australia over the weekend, highlights the importance of equitable access to vital treatments for those living with rare cancers.
A heartfelt thank you to Ryan Harding for bravely sharing his story and for his tireless advocacy in helping secure PBS approval for Belzutifan and to journalist, Lisa Wachsmuth. Ryan’s journey from losing his father to VHL at a young age to undergoing multiple surgeries himself highlights the challenges faced by those living with this rare neuroendocrine cancer. Thanks to his efforts, alongside the dedicated support of NECA, Belzutifan is now accessible to Australians who previously faced overwhelming financial barriers.
This national coverage also sheds light on the significant milestone achieved in December 2024 when Belzutifan was added to the PBS, reducing its cost from $12,000 per month to just $31.70, or $7.70 with a concession. This breakthrough means that many Australians can now receive this transformative treatment without the financial burden that previously made it unattainable.
For further background on this incredible advocacy journey, read our previous updates:
- Belzutifan listed on PBS – 1 December 2024
- NECA Celebrates Groundbreaking PBS Recommendation for VHL Patients
Additionally, Ryan recently spoke about his experience in a compelling video interview. Watch his story here.
NECA remains committed to advocating for all Australians affected by neuroendocrine cancers, ensuring they receive the care and treatments they deserve. We are grateful for the continued support of patients, families, and the broader community in raising awareness and driving meaningful change.
