Skip to content
  • About
  • Shop
  • News
  • Contact Us
Search
NECA Logo
  • NET Nurse
  • Donate
  • What are NETs?
    • What are Neuroendocrine Cancers?
    • What are Pheos & Paras?
    • NET Symptoms
    • NET Types
    • Causes
    • Treatments
    • Grades
    • Diagnosis
    • Prognosis
    Consider the Grey Area
  • Patients & Carers
    • Patient & Carer Support
    • Patient Resources
    • Optimal Care Pathway
    • NET Nurse
    • Patient Stories
    • Share your Story
    • Australian NET Specialists
    • Clinical Trials
    • Living with NETS
    • Specialist Support Services
    Consider the Grey Area
  • Healthcare Professionals
    • Optimal Care Pathway
    • Professional Learning
    • Patient Referral
    • Clinical Trials
    • NET Symptoms
    • Australian NET Specialists
    • Request an In-Service
    • PLANET Registry
    • Order Booklets & Resources
    Consider the Grey Area
  • Get Involved
    • Advocate for Us
    • Share your Story
    • Donate
    • Fundraise
    • Events
    • In Memoriam
    • Corporate Partners
    • Gifts & Wills
    • Volunteer
    Senate MailChimp
  • March4NETs
NET Nurse
Donate

Home » News » Sign this life-changing petition to place Belzutifan on the PBS in Australia

Sign this life-changing petition to place Belzutifan on the PBS in Australia

  • March 20, 2024
Sign the petition to put Belzutifan on the PBS

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.

Sign the petition to put Belzutifan on the PBS

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.

Ryan, VHL Patient Tweet

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.

Chris, VHL Patient Tweet

Share this post

Recent posts

13th INCA Global NET Patient Advocate Summit

September 16, 2025

PCPA Cancer Summit

September 12, 2025

SCAN 2025 is now open – we need your voice

September 8, 2025

NeuroEndocrine Cancer Australia at PharmaAus2025

September 3, 2025
Categories
  • Advocacy
  • Awareness
  • Community Events
  • Education
  • Events
  • Fundraising
  • General
  • In The Media
  • News
  • Research
  • Unicorn Events
PrevPreviousENETS Conference 2024
NextCard Sisters Host Successful Fundraiser for March4NETSNext

Related Posts

13th INCA Global NET Patient Advocate Summit

This week our CEO Meredith Cummins, in her role as President Elect of the INCA Board of Directors and Chair of the Research Committee, presented at

PCPA Cancer Summit

  The Private Cancer Physicians of Australia (PCPA) hosted its Annual Meeting: Cancer Summit 2025 in Sydney on 13 September, bringing together clinicians, researchers, and

SCAN 2025 is now open – we need your voice

SCAN 2025 is now open – we need your voice.  As a proud member of the International Neuroendocrine Cancer Alliance (INCA), NeuroEndocrine Cancer Australia is excited

NeuroEndocrine Cancer Australia at PharmaAus2025

NeuroEndocrine Cancer Australia CEO Meredith Cummins and Media and External Relations Manager Ciara Connolly attended PharmaAus2025, one of Australia’s leading events for the pharmaceutical and

View All

Subscribe to Newsletter

NECA Logo
registered charity badge

What are NETs

  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies
  • About Us
  • Our People
  • Our Ambassadors
  • Consumer Advisory Group
  • International Advisory Panel
  • Governance & Policies

Patients & Carers

  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library
  • What are Neuroendocrine Cancers?​
  • Pheos and Paras
  • NET Library

Healthcare Professionals

  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials
  • Patient resources
  • NET Nurse
  • Patient Stories
  • Australian NET Specialists
  • Current Open Clinical Trials

Get Involved

  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
  • Shop
  • Donate
  • Volunteer
  • Current Fundraising Campaigns
  • Fundraise
All charity donations to NeuroEndocrine Cancer Australia may be tax-deductible in Australia.

Registered Charity CFN 202607
© 2025 NeuroEndocrine Cancer Australia
  • Website by Five Creative
Twitter Facebook Youtube Instagram Linkedin