Provincial & Territorial Drug Coverage – XLH

Provincial And Territorial Drug Coverage – XLH

X-linked hypophosphatemia (XLH) is a rare, inherited disorder caused by mutations in the PHEX gene. These mutations lead to elevated levels of a hormone called fibroblast growth factor 23 (FGF23), which causes the kidneys to lose too much phosphate. The resulting low phosphate levels interfere with normal bone and tooth development. Severity varies widely, from mild adult cases with bone pain and dental problems to more serious pediatric cases involving rickets, skeletal deformities, and impaired growth.

Burosumab is a pharmacological treatment option for XLH. It is a monoclonal antibody that blocks the activity of FGF23, helping the kidneys retain phosphate and supporting healthier bone development in patients with XLH. It is administered by subcutaneous injection.

In Canada, burosumab is marketed under the brand name Crysvita by Kyowa Kirin. It was approved by Health Canada in December 2018 for the treatment of X-linked hypophosphatemia in adult and pediatric patients one year of age and older.

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Province/Territory	Access	Clinical Requirements	Residency	Source
Alberta	via Special Authorization	Separate eligibility criteria between pediatric patients (1–17 years, pre-epiphyseal closure) and adult patients (18+ years or post-epiphyseal closure). Must be prescribed by a Specialist in Medical Genetics, Endocrinology, Nephrology, Orthopedic Surgery or Rheumatology. Confirm specific requirements here.	Must be an Alberta Health Care Insurance Plan registrant for at least 1 year.	Alberta Health – Drug Benefit List Burosumab Special Authorization Request Form
British Columbia	via Expensive Drugs for Rare Diseases	No explicit requirements; each case is handled on a case-by-case basis (pediatric and adult). Provincial Health Service Authority performs an individual patient review via several advisory and clinical subcommittees. The prescribing physician completes the EDRD request and submits it to the Provincial Health Services Authority for review.	Must be a resident of British Columbia and registered with Medical Services Plan (MSP).	Exceptional Funding of EDRDs
Saskatchewan	via Exception Drug Status	Separate eligibility criteria between pediatric patients (≥1 year, pre-epiphyseal closure) and adult patients (or those where epiphyseal closure has occurred). Must be prescribed by a physician working in a comprehensive team experienced in the diagnosis and management of XLH. Confirm specific requirements here.	Must be a resident of Saskatchewan and have a valid Saskatchewan Health Services number.	Exception Drug Status Exception Drug Status Appendix A Exception Drug Status Request Form
Manitoba	via the Exception Drug Status (EDS) Program	Note: Burosumab is not explicitly named on the public Exception Drug Status (EDS) list or the provincial formulary. It may be accessed through the EDS review process for pediatric patients. Adult access is not currently available. The prescriber must apply for coverage via Exception Drug Status Process.	Must be a resident of Manitoba and registered with Manitoba Pharmacare.	Manitoba Drug Formulary Standard Exception Drug Status form
Ontario	via Exceptional Access Program	Confirmed diagnosis of XLH, typically supported by genetic testing (PHEX gene variant or FGF23 confirmed). Eligibility criteria are specific to pediatric and to adult patients, both of which align with the CDA final recommendation reimbursement conditions.	Must be a resident of Ontario with a valid OHIP card and eligibility for the Ontario Drug Benefit program.	Reimbursement Criteria Note: Ontario’s Exceptional Access Program criteria are no longer published online; this link reflects pediatric criteria only. Adult criteria are not publicly posted.
Quebec	via Medicament d’exception	Note: Burosumab is listed under the Médicaments d’exception section of the RAMQ Liste des médicaments — not the Patient d’exception mechanism, which is no longer available for burosumab reimbursement requests for adults with XLH. Pediatric coverage is limited to patients with XLH during periods of active growth. Adult coverage is not currently provided by RAMQ.	Must be a resident of Quebec and registered with RAMQ.	RAMQ Liste des Medicaments – July 30, 2026
New Brunswick	via Special Authorization	Confirmed diagnosis of X-linked hypophosphatemia (XLH) with a confirmed PHEX gene variant in either the patient or in a directly related family member with XLH inheritance. Coverage is primary for pediatric initiation (≥1 year of age, pre-epiphyseal closure); however, following the CDA’s positive recommendation on October 10, 2024, coverage may extend to adults with XLH. Please confirm specific eligibility with your provincial coverage provider. Must be prescribed by a physician working in a multidisciplinary team experienced in the diagnosis and management of XLH.	Must be a resident of New Brunswick and enrolled in the New Brunswick Drug Plan.	Burosumab Special Authorization Criteria
Nova Scotia	via Exception Status Drug	Confirmed diagnosis of X-linked hypophosphatemia (XLH) with a confirmed PHEX gene variant in either the patient or in a directly related family member with XLH inheritance. Coverage is primary for pediatric initiation (≥1 year of age, pre-epiphyseal closure); however, following the CDA’s positive recommendation on October 10, 2024, coverage may extend to adults with XLH. Please confirm specific eligibility with your provincial coverage provider. Must be prescribed by a physician working in a multidisciplinary team experienced in the diagnosis and management of XLH.	Must be a resident of Nova Scotia and enrolled in Nova Scotia Pharmacare.	Criteria for Exception Drug Status Coverage Standard Exception Status Drug Request Form
Prince Edward Island	via Special Authorization	Confirmed diagnosis of X-linked hypophosphatemia (XLH) with a confirmed PHEX gene variant in either the patient or in a directly related family member with XLH inheritance. Coverage is primary for pediatric initiation (≥1 year of age, pre-epiphyseal closure); however, following the CDA’s positive recommendation on October 10, 2024, coverage may extend to adults with XLH. Please confirm specific eligibility with your provincial coverage provider. Must be prescribed by a physician working in a multidisciplinary team experienced in the diagnosis and management of XLH.	Must be a resident of PEI with a valid PEI Health Card.	PEI Pharmacare Formulary Special Authorization Form
Newfoundland and Labrador	via Special Authorization	Confirmed diagnosis of X-linked hypophosphatemia (XLH) with a confirmed PHEX gene variant in either the patient or in a directly related family member with XLH inheritance. Coverage is primary for pediatric initiation (≥1 year of age, pre-epiphyseal closure); however, following the CDA’s positive recommendation on October 10, 2024, coverage may extend to adults with XLH. Please confirm specific eligibility with your provincial coverage provider. Must be prescribed by a specialist with expertise in the diagnosis and management of XLH.	Must be a resident of Newfoundland and Labrador and enrolled in NL Prescription Drug Program.	Special Authorization Drugs NL Drug Product Database
Yukon	via Exception Drug Status (case by case)	Note: Burosumab is not listed on the Yukon Drug Formulary. Coverage may be requested through Exception Drug Status on a case-by-case basis. The prescriber must apply for coverage to Yukon Pharmacare on a patient’s behalf. Specific criteria are not posted publicly.	Must be a resident of Yukon with a valid Yukon Health Care Card.	Yukon Drug Formulary Yukon Government – Department of Health and Social Services Call: 867-667-3096
Nunavut	via Non Formulary Request (case by case)	Note: Burosumab is not listed on the Government of Nunavut Formulary. Non-formulary drugs can be requested by a physician through Director of Pharmacy with the Government of Nunavut. Specific criteria are not posted publicly. Prescribing physician must submit a non-formulary drug request on a patient’s behalf. Publicly reimbursed medications for residents of Nunavut follow the coverage category and reimbursement criteria of the NIHB Program.	Must be a resident of Nunavut.	Government of Nunavut Formulary
Northwest Territories	via Exception Drug Status (case by case)	Note: Burosumab is not listed on the Government of Northwest Territories formulary. Non-formulary drugs can be requested by a physician through pharmacies located in Northwest Territories. Prescribing physician must submit a non-formulary drug request on a patient’s behalf. Publicly reimbursed medications for residents of Northwest Territories follow the coverage category and reimbursement criteria of the NIHB Program.	Must be a resident of Northwest Territories.	Government of Northwest Territories Pharmacare Formulary Call: 1(800) 661 0830
Non-Insured Health Benefits (NIHB)	via Limited Use Benefit	Separate eligibility criteria apply for pediatric patients (>1 year, pre-epiphyseal plate closure) and adult patients (18+). Confirmed PHEX gene variant and clinical findings consistent with XLH. Must be prescribed by a physician working within a comprehensive, multidisciplinary team.	A First Nations person who is registered under the Indian Act. An Inuk recognized by one of the Inuit land claim organizations. A child less than 2 years old, whose parent is an NIHB eligible client. Full requirements	NIHB Formulary

Disclaimer: This document is intended as a general guide to help patients, families, and advocates navigate public drug coverage for rare diseases in Canada. It is not a substitute for medical advice, nor a definitive statement of coverage eligibility.

Coverage criteria, application processes, and program details change over time, and individual eligibility depends on each patient’s clinical situation and residency. People living with these conditions should work directly with their physicians and care team, to navigate application process, and contact their provincial or territorial drug directly to confirm current criteria and documentation requirements.

The links and sources provided here are meant to point readers in the right direction – not replace direct consultation with health providers or government drug programs.

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