Patient group petitions for PBS listing of MSD’s therapy in rare cancer

Pharma News: NeuroEndocrine Cancer Australia is calling on the government and its community to help improve the lives of patients diagnosed with Von Hippel-Lindau (VHL).

VHL is a rare, predominantly inherited cancer caused by a genetic mutation, affecting 1 in 36,000 individuals in Australia. The mutation leads to various cancers, including pancreatic neuroendocrine cancer, haemangioblastoma, phaechromocytomas, renal cell carcinoma, and endolymphatic sac tumours.

The patient advocacy group is rallying behind the push to include MSD’s oral Welireg (belzutifan) on the Pharmaceutical Benefits Scheme (PBS), following its approval by the Therapeutic Goods Administration (TGA) in December 2022. Welireg, a first-in-class, HIF-2α inhibitor therapy, was picked up by MSD through its $1.1 billion buyout of Peloton Therapeutics in 2019.

“Belzutifan, a proven effective medication available in the US and parts of the UK, is NOT accessible in Australia through the PBS, despite TGA approval and orphan drug classification. Affordability issues arise as belzutifan costs $12,000 per month out of pocket,” NeuroEndocrine Cancer Australia said.

On average, VHL manifests at 26 years, requiring early screening due to its hereditary nature. VHL falls under neuroendocrine cancers, with over 5,500 Australians diagnosed with Neuroendocrine Tumours (NETs) annually. NETs collectively rank as the 7th most diagnosed cancer in Australia. Presently, surgery or radiation therapy are the only available treatments for VHL, focusing on tumour removal without controlling growth. 

“We need the help of the Australian community to help place belzutifan onto the PBS list. Please sign the petition and help VHL patients in our community enjoy a better quality of life,” the organisation added.

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