20th December 2023
The UK Cancer Genetics Group (UKCGG) note the recent decision by NICE not to recommend treatment with Belzutifan to patients with Von Hippel Lindau Disease. We also note the discrepancy of this decision with both the FDA and the Scottish NHS. We know that this will come as a bitter disappointment to many of our patients, and we will be submitting a response via the formal consultation process.
We look forward to working further with NICE to ensure our patients with Von Hippel Lindau Syndrome can access evidence-based treatments which will significantly improve their quality of life.