Current Advocacy Campaignes
The MedAccessBC coalition of patient groups (common & rare diseases) which CanPKU+ belongs to has planned a public awareness & advocacy campaign in first part of 2024 to address BC's need to Expand Public Medication Coverage
CanPKU+ has a working group which are creating a submission to Health Canada to contribute to the regulatory modernization of foods catering to special dietary needs including medical foods.
Kuvan - We are currently looking for advocates in AB, SK and ON (primarily, but will accept from nationwide) to help with the continued fight against the regulations regarding Kuvan approval in the province.
Kuvan was approved for use but still not covered in some provinces in Canada
Kuvan Fact Sheet in Canada based on Jan 2023
Our voices have been heard! The following is a list of ways that CanPKU+, patients and families have come together to encourage change.
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2016 Patient submissions to the Common Drug Review re Kuvan
Funding of Kuvan for indigenous patients by Health Canada – 2016
2015 - Funding of low protein foods and extra formulas in PEI
2015 - Funding of low protein foods for adults by Manitoba – children were already covered
2014 Funding of low protein foods by BC
2013 - Funding of Kuvan by Ontario, Saskatchewan & Quebec
2012 - Funding of low protein foods by Saskatchewan
Funding of low protein foods by Saskatchewan – 2012
2010 Patient submissions to the Common Drug Review re Kuvan
Averting a crisis in 2003 when Ontario wanted to take formulas away from adult patients. This was before CanPKU existed but was the impetus for the formation of the organization
ACCESS TO DRUGS FOR RARE DISORDERS
LETTER Rawson-Adams: McMillan and Campbell believe that Canada needs a regulatory framework for the introduction of orphan drugs for rare disorders. We agree. However, the need is unlikely to be met in the foreseeable future because, in October 2017, the present federal government deleted from the Health Canada website, without notice or consultation, all references to the previous government’s 2012 Orphan Drug Regulatory Framework. Read the full Letter here