Belzutifan for von Hippel-Lindau disease with associated non-metastatic renal cell carcinoma, central nervous system hemangioblastomas, or pancreatic neuroendocrine tumours
Cancer
1 July 2026
Published on 01 Jul 2026
Last Updated on 01 Jul 2026
Guidance Recommendations
The Ministry of Health’s Drug Advisory Committee has not recommended belzutifan for inclusion on the MOH List of Subsidised Drugs for von Hippel-Lindau disease with associated non-metastatic renal cell carcinoma, central nervous system hemangioblastomas, or pancreatic neuroendocrine tumours, in patients not requiring immediate surgery. The decision was based on the uncertain extent of clinical benefit, unfavourable cost-effectiveness compared with active surveillance alone, and the unacceptable price-volume agreement proposed by the company.
Clinical indication, subsidy class and MediShield Life claims eligibility for belzutifan are provided in the Annex.
Plain English Summary
Von Hippel-Lindau (VHL) disease is a rare, inherited condition (passed down through families) caused by changes (mutations) in the VHL gene. These changes increase the risk of developing tumours and fluid-filled sacs (cysts) in different parts of the body. Some tumours are cancerous while others are not. These include kidney cancer (renal cell carcinoma), tumours in the blood vessels of the brain and spinal cord (central nervous system hemangioblastomas), and tumours that develop from hormone-producing cells in the pancreas (pancreatic neuroendocrine tumours). Symptoms depend on the parts of the body affected and may include headaches, balance problems, vision changes, and high blood pressure. Treatment for VHL disease usually involves regular monitoring and surgery to remove tumours and cysts when they become large enough to cause symptoms.
Belzutifan is a medicine known as a hypoxia-inducible factor 2 alpha inhibitor. It helps to slow or stop the growth of tumours by blocking proteins that help tumour cells divide. It is taken orally.
Belzutifan was not recommended for government funding because its benefits for patients with VHL-associated tumours in the kidney, central nervous system and the pancreas do not justify its cost. It is not subsidised and cannot be claimed under MediShield Life.
There are different treatments available for VHL-associated tumours. Your doctor can advise whether belzutifan or other treatments may be suitable for you.
