Greg Johnson
Since my clinical VHL diagnosis in 1991, I have endured around 30 major surgeries across my brain, spine, eyes, kidneys, and epididymis to manage relentless tumour growths.
The continuous loop of over 100 scans required for active surveillance creates intense, ongoing psychological pressure. The physical damage and operations have stripped away my independence, leaving me blind, partially paralysed in my arms, and reliant on help for basic daily tasks.
My mobility is a constant struggle because my balance is completely gone, creating a severe fall risk. Decades of operations have also left me with chronic neuropathic pain and heavy fatigue that dictates my scheduled days.
I am sharing my story to protect future Kiwi's diagnosed with VHL from the continuous, draining cycle of scans and surgeries that I endured. Belzutifan is a revolutionary daily tablet that targets the genetic root cause of VHL, halting tumour growth and showing incredible shrink rates in clinical trials. Beyond hereditary VHL, this drug effectively treats advanced Renal Cell Carcinoma, meaning it has the potential to help thousands of everyday kidney cancer patients. I am speaking out because funding this necessity will allow my younger cousins, their children, and other families to protect their sight, keep their mobility, and avoid decades of physical toll.
The journey to secure public funding in New Zealand has been a slow regulatory process. Following a March 2024 application, the drug received a positive recommendation from the Rare Disorders Advisory Committee in late 2024, Medsafe registration in late 2025, and a clinical review by the Cancer Treatments Advisory Committee in early 2026. It is currently sitting in Pharmac's economic evaluation phase, waiting to be moved to the Options for Investment list. In stark contrast, Australian authorities recognised the urgency and fast-tracked Belzutifan onto their publicly funded scheme within 12 months, while Kiwi's continue to wait as tumours grow.
The ultimate tragedy is that a life-changing treatment sits physically on the shelf in New Zealand, but remains entirely out of reach due to excessive private purchase costs. While my friends in Australia and the USA are already thriving on this drug, Kiwi VHL patients and their families are forced to watch a proven solution sit just out of reach while preventable physical damage occurs. Knowing the solution exists but is blocked by bureaucratic funding barriers takes a massive psychological toll. Pharmac must act now to fast-track access so the next generation of VHL patients can live their lives with absolute dignity.
