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