Fall 2024 has brought exciting news for Canada’s Von Hippel Lindau (VHL) Warrior Community! The pan-Canadian Pharmaceutical Alliance (pCPA) recently gave a positive recommendation for Welireg/Belzutifan, an innovative new oral medication, to be used in the treatment of VHL disease. Welireg/Belzutifan has been shown in several studies to stop—and in some cases, even shrink—VHL-associated tumors. Until now, VHL treatments were limited to “watch and wait” or surgery, so the option of a medication is truly groundbreaking!
Welireg/Belzutifan is a systemic treatment, prescribed by oncologists (cancer specialists), and may have mild to moderate side effects such as fatigue, anemia, dizziness, headache, nausea, and shortness of breath. For access, your oncologist will need to apply for special authorization, and some provinces—like British Columbia, Quebec, New Brunswick, and Saskatchewan—have already added pathways for adult VHL warriors with brain/spine, kidney, or pancreatic tumors to access it. Previously, the only way to obtain this life-changing medication was through Merck’s compassionate care program, which stopped accepting new applicants in September 2024.
This milestone has brought hope to our community of VHL warriors and is a testament to the advocacy we have all done to help make these negotiations successful! This also highlights these opportunities for physicians, patients, and the government to address the unmet needs of those impacted by this disease.
Links to studies that show the clinically beneficial effects of Belzutifan:
https://www.sciencedirect.com/science/article/pii/S0923753424039188?via%3Dihub
https://www.aaojournal.org/article/S0161-6420(24)00319-1/abstract
Interested in participating in ground-breaking change in the Canadian VHL Warrior community? Reach out, volunteer, join the board or donate today!