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 » Advocacy » Tamworth local Ryan Harding advocates for VHL patients to have access to Belzutifan

Tamworth local Ryan Harding advocates for VHL patients to have access to Belzutifan

  • February 23, 2024

It is with deep gratitude to Ryan Harding’s advocacy work that we thank him for taking time out of his very busy schedule to advocate for VHL patients Australia wide as he lobbies for the Australian Government to place Belzutifan on the PBS.

This week Ryan was interviewed for television by Channel 7, Channel 9, on radio with the ABC and local radio station 88.9 who aired a full interview with Ryan and then a follow up news story, along with a follow up caller who rang to support Ryan on air.

Ryan says: “If I had access to Belzutifan it would be life changing. This would not only shrink my tumours but could stop them from growing completely. Right now Belzutifan would cost me $12,000 a month, but if it was made accessible via the Pharmaceutical Benefits Scheme (PBS) It would cost just $7.70 – it is unbelievable to me that a drug which has been approved by the Therapeutic Goods Administration (TGA) is not yet accessible. Belzutifan could save my life!”.

NeuroEndocrine Cancer Australia (NECA) supports Ryan and all other VHL patients in their quest for equitable cancer care. NECA CEO Meredith Cummins joined Ryan in some interviews and states “Life could be so different if this medication was available on the PBS – VHL patients would be able to continue to work without disability, have less psychological stress, less financial burden and enjoy life with their families. Their options for treatment now, are purely to have surgery or radiation therapy – this only removes the tumours it does not control the growth.”

We have been working with many patients over the year who are all keen to have access to this life changing treatment. NECA will be sure to keep patients updated as to further opportunities of advocacy work for this highly anticipated treatment.

March 2024 update

Ryans March4NETs fundraiser allowed him further opportunity to instigate a follow up radio interview with Macca on 88.9fm on March 6th, where Ryan also got to speak about the upcoming Petition with the Australian Government  to place Belzutifan on the PBS. On 5th March Ryan was interviewed on Channel 9 once again, a true NET and VHL Awareness champion!

April 2024 update 

Ryan was once again interviewed on 88.9FM to promote the Belzutifan Petition. Thank you Ryan and 88.9FM for your unwavering support and advocacy for VHL patients nationwide

May 2024 update 

Ryan was interviewed by Penelope Shaw from the New England Times to advocate for a fast-tracked entry to the PBS for Belzutifan.

February 2025 update

The Daily Telegraph interviewed Ryan regarding the recent approval of Belzutifan on the PBS. Read here  and here

Ryan was interviewed by 88.9FM and discussed his access to Belzutifan and the difference it has made to his tumours after 9 weeks. Listen here.

Share this post

Recent posts

VHL Awareness Month 2025

May 6, 2025

NET Patient Chris, from Ballarat, Raises Awareness of Neuroendocrine Cancer

May 5, 2025

Help Us Grow: Connect NECA with Corporate Partners to Make a Lasting Impact

April 29, 2025

Neuroendocrine Cancer Awareness Daily Mail 5 April 2025

April 5, 2025
Categories
  • Advocacy
  • Awareness
  • Community Events
  • Education
  • Events
  • Fundraising
  • General
  • In The Media
  • News
  • Research
  • Unicorn Events
PrevPreviousNET Patient Rob Hammond speaks at the Senate Inquiry hearing in Tasmania
NextNECA Team’s Advocacy Efforts Extend to 13 Industry Boards and working groups for Neuroendocrine Cancer PatientsNext

Related Posts

VHL Awareness Month 2025

May is internationally recognised as Von Hippel-Lindau (VHL) Awareness Month—a time to highlight this rare genetic, and in some case not genetic, condition and the

NET Patient Chris, from Ballarat, Raises Awareness of Neuroendocrine Cancer

NeuroEndocrine Cancer Australia (NECA) is proud to recognise the advocacy efforts of NET patient Chris Geljon, who has taken the time to raise awareness of

Help Us Grow: Connect NECA with Corporate Partners to Make a Lasting Impact

NeuroEndocrine Cancer Australia (NECA) is proud to be the voice for thousands of Australians living with Neuroendocrine Cancer (NETs). But to do more — reach

Neuroendocrine Cancer Awareness Daily Mail 5 April 2025

Jo O’Halloran was in her early fifties when the symptoms she and her friends had heard so much about started to appear. ‘I was always

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