Canadian Association for Porphyria

Special Access Programme - Health Canada

   The Special Access Programme (SAP) provides access to nonmarketed drugs for practitioners treating patients with serious or life-threatening conditions when conventional therapies have failed, are unsuitable, or unavailable. The SAP authorizes a manufacturer to sell a drug that cannot otherwise be sold or distributed in Canada. Drugs considered for release by the SAP include pharmaceutical, biologic, and radio-pharmaceutical products not approved for sale in Canada.

   The Special Access Programme provides Canadian patients access to Panhematin and Normosang - a treatment for patients with acute porphyria. Alberta, Ontario and Quebec outline access programs below. The other provinces and territories can use the Special Access Program as requested by physicians.

Special Access Programme - Drugs

Special Access Programme - Special Access Request Form A

Special Access Programme - Future Use Request Form B

Special Access Programme - Follow-up Form C

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Short Term Exceptional Drug Therapy, Alberta Health Services

As a component of plans of care, Alberta Health Services (AHS) Pharmacy receives requests from physicians to consider funding for high cost non-formulary drugs for individual patients. The Short Term Exception Drug Therapy (STEDT) Program has been established as a mechanism to address these requests in a consistent fashion for both inpatients and outpatients across the Province. 

Inherited Metabolic Diseases (IMD) Program List of Disorders, Covered Drugs, Supplements and Specialty Foods Effective March 4, 2016 Ontario Public Drug Programs

Hemin (Normosang)   Acute intermittent porphyria  SAP
  Note: Eligibility criteria for IMD program funding (all criteria must be met):
1. Diagnosis of acute intermittent porphyria should be confirmed by biochemical and molecular testing, and; 2. Hemin (Normosang) infusions should only be given under supervision and be prescribed by hematologists, gastroenterologists or metabolic specialists, and;
3. For continued funding, yearly follow up report should be submitted to the IMD program by the prescribing physician.

Medical Disclaimer

Care has been taken to ensure that the information on this website is accurate at the time of publication. This information is, however, intended for general guidance only and is not meant to substitute consultation from a recognized health professional. The Canadian Association for Porphyria/Association Canadienne de Porphyrie disclaims for itself and for the author of this information, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

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