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ADVOCACY |
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 Homocystinuria (HCU)- Did you know that only 5 provinces include Homocysinuria on the Newborn Screen Panel? We are working to improve this! Check out the Homocystinuria-Newborn Screening page. 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 |
Upcoming events
- No upcoming events
Congratulations to our members who have successfully completed a course on advocacy |
Samantha (HCU Adult, HCU Chair person) |
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Advocacy Resources Infographic: How new laws and regulations are created Check out this link from the Government of Canadan |
Advocacy Successes
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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Uh oh! Looks like we have failed to update this recently! Stay tuned for our Advocacy Success updates |
2016 Patient submissions to the Common Drug Review re Kuvan
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Funding of Kuvan for indigenous patients by Health Canada – 2016
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2016 - In the News - Calgary mother calls disability benefits rejection 'heartbreaking' | CBC News |
2015 - Funding of low protein foods and extra formulas in PEI
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2015 - Funding of low protein foods for adults by Manitoba – children were already covered
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2014 Funding of low protein foods by BC
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2013 - Funding of Kuvan by Ontario, Saskatchewan & Quebec
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2012 - Funding of low protein foods by Saskatchewan
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Funding of low protein foods by Saskatchewan – 2012
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2010 Patient submissions to the Common Drug Review re Kuvan
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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
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Advocacy Outreaches
ACCESS TO DRUGS FOR RARE DISORDERSLETTER 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 |