Aug.6/23
🍁 Canadian VHL Specialists Belzutifan National Provincial Update
Canadian Agency for Drugs and Technologies in Health = CADTH
The volunteer chair (also VHL family member) of the “other” nationally registered VHL charitable group Canadian VHL Alliance, sent me an email recently: “Henry fyi here is a link to the approval for Belzutifan https://www.cadth.ca/belzutifan”
- CADTH Expert Review Committee ‘recommends that belzutifan be reimbursed for the treatment of adult patients with von Hippel-Lindau (VHL) disease…” Aug.3/23*
Also, I was especially proud to see that that the committee’s report depended on various sources of information from all across the country:
- 5 Patient groups: Canadian VHL Alliance, Canadian Organization for Rare Disorders, Kidney Cancer Canada, Pancreatic Cancer Canada and Canadian Neuroendocrine Tumour Society
- Feedback from 72 patients and 51 of their caregivers, including 19 patients with experience with belzutifan (The above groups organized this online/phone feedback in December 2022)
- Panel of 3 specialist clinicians, e.g. doctors and nurses etc., with expertise diagnosing and treating adult patients with VHL
- Ontario Health (Cancer Care Ontario) Genitourinary Cancer Drug Advisory Committee
- 25 sub-specialist clinicians involved in VHL care
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*notes
- “who require therapy for associated non-metastatic renal cell carcinoma (RCC), central nervous system (CNS) hemangioblastomas, or non-metastatic pancreatic neuroendocrine tumors (pNET), not requiring immediate surgery…”
- See report of recommendations for provincial-federal reimbursement arrangements
- Also, Belzutifan (Welireg) has already been approved by Health Canada in this case for the treatment for VHL disease or syndrome
- Canadian ‘clinical experts noted that due to the rarity of the VHL disease, it is highly likely that only specialists working in large medical centers (e.g., tertiary referral centers, specialized referral center) in Canada may encounter patients with VHL. Thus, prescription may be limited to specialists (e.g., medical oncologist, neuro oncologists) working in these large centers.’
PHOTO: See Maclean’s August 2023 for VHL Awareness! In Canada, there are more VHL patients and their family members and caregivers! Thank you Canadian VHL Alliance and Stephen Parrot.
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