Advocacy Toolkit
This toolkit is designed to help individuals and families affected by PKU and allied disorders participate confidently in public policy and health system conversations. It is educational and non-partisan.
You do not need to be a policy expert. Clear information, lived experience, and respectful communication can help decision makers understand real-world needs and barriers to care.
Start Here: Advocacy Basics
- Be clear. One issue and one request at a time.
- Be specific. Explain the impact in practical, real-life terms.
- Be respectful. Professional communication is more likely to be heard.
- Be accurate. Share what you know and say when you do not know something.
- Be consistent. Follow up and stay engaged over time.
- Your lived experience and what you want decision makers to understand.
- A one-sentence description of the issue.
- A short personal example (30 to 60 seconds).
- A clear request for action or consideration.
- Optional: a fact sheet or a link to a trusted resource.
Non-partisan and respectful participation
This toolkit supports respectful participation in public policy conversations. It does not endorse or oppose any political party or candidate. When sharing your experience, focus on the issue, the impact, and the outcome you want decision makers to consider.
Who Decides What? Provincial vs Federal
Health care responsibilities in Canada are shared. Understanding which level of government is responsible for a decision can help you direct questions and participation more effectively.
- Drug approval and safety oversight (example: Health Canada authorization).
- National regulatory frameworks and some pan-Canadian programs.
- Coverage for specific federal populations in certain circumstances.
- Public drug plan coverage decisions and eligibility rules.
- How special authorization and exceptional access programs operate.
- Funding of medical foods and formulas (varies by province/territory).
- Delivery of health services including clinics and specialist care.
Practical examples
- If your question is whether a medicine is authorized for sale in Canada, start with federal sources (Health Canada).
- If your question is whether a public plan will pay for a medicine in your province, focus on your provincial or territorial ministry and drug plan.
- If your question is about the national review process that informs coverage decisions, the Canadian Drug Agency (CDA) and related agencies may be relevant.
How Coverage Happens: Review and Reimbursement Processes
After a medicine is approved by Health Canada, additional review and reimbursement steps typically occur before it becomes available through public drug plans. The pathway can vary by province or territory and by the type of medicine and indication.
Typical steps from approval to public coverage
- Health Canada authorization - confirms the medicine can be marketed in Canada for specific uses.
- Health technology assessment - evaluates evidence and value for money (example: CDA review where applicable).
- Price and reimbursement discussions - may occur through plan-aligned or pan-Canadian processes.
- Provincial or territorial coverage decision - each public plan decides whether and how it will fund the medicine.
- Criteria and access pathway - coverage may require special authorization, clinical criteria, or documentation from the care team.
- Implementation - formulary listing, claims systems, and clinical guidance.
Where patient and caregiver input fits
- Sharing lived experience to describe daily impacts and barriers to care.
- Describing outcomes that matter to patients and families.
- Providing context about diet, medical foods, formulas, and the effort required for metabolic control.
- Explaining how access delays affect health, education, work, and family life.
Why access can vary across Canada
- Different public plan mandates, budgets, and evidence requirements.
- Different eligibility criteria (age, diagnosis, test results, prior therapies).
- Differences in how special authorization programs operate.
- Differences in coverage for medical foods and formulas.
- Differences between public coverage and private insurance policies.
Topic: Engaging with Elected Representatives
Email, phone calls, and meetings are common ways to share your perspective. You may speak with a staff member who supports the representative. Staff conversations matter and are a normal part of the process.
- Identify yourself as a constituent and include your postal code.
- Be courteous and professional.
- Keep your message concise. Three key points are usually sufficient.
- Share a brief personal example to illustrate the impact.
- Clearly state the action or consideration you are requesting.
- Sending lengthy or unfocused messages.
- Using confrontational or disrespectful language.
- Assuming perfect wording is required. Clarity is more important than polish.
- Forgetting to include your location information.
Tip: Legislative offices often confirm constituency status using postal code. Including it early helps ensure your message is directed appropriately.
Email or phone script template
Dear [Name of Representative],
My name is [Your Name], and I am a constituent from [City / Postal Code].
I am writing regarding [Issue or Topic].
I respectfully ask that you consider [Specific Action or Consideration].
This is important because [Brief Personal Experience or Impact].
Thank you for your time and consideration.
Sincerely,
[Your Name]
Meeting request email template
Subject: Meeting request - constituent perspective on PKU care and access
Dear [Representative Name / Office Team],
My name is [Your Name], and I am a constituent in [City / Postal Code].
I am writing to request a brief meeting (15 to 30 minutes) to share a constituent perspective on living with phenylketonuria (PKU) and the barriers families can face in accessing care and treatment.
I would be grateful to meet with you or a member of your team who handles health issues. I am available: [Provide 2 to 3 date/time options]. I can meet by phone or video, and in person if preferred.
Thank you for your time and consideration. I look forward to the opportunity to share this perspective.
Sincerely,
[Your Name]
[Phone or Email]
Meetings: How to Prepare and What to Expect
- Choose 1 to 2 key messages you want them to remember.
- Prepare a short personal example that shows real-world impact.
- Bring a one-page summary or fact sheet when available.
- Be ready to explain what decision is being made and by whom.
- End with a clear request for action or consideration.
- Send a brief thank-you note within 24 to 48 hours.
- Restate your key points and request in one paragraph.
- Share any promised links or documents.
- Keep records of who you met and next steps offered.
Suggested 15 to 30 minute meeting agenda
- Introductions (2 min) - who you are and where you live.
- Your story (5 min) - 1 to 2 examples of how PKU impacts daily life.
- What is the issue (5 min) - what decision is being considered, and by which level of government or agency.
- Your request (3 min) - what you want them to do or consider.
- Questions (5 to 10 min) - listen and answer what you can.
- Close (1 min) - thank them and confirm next steps.
Advocacy Training Videos
CanPKU+ partnered with Empower Patient Voice to share advocacy training that helps patients, families, and caregivers better understand how treatment access decisions are made in Canada and how lived experience can support meaningful change.
These sessions are helpful for anyone who wants to better understand the Canadian drug review and reimbursement process, strengthen their advocacy skills, and build confidence when engaging with decision makers.
Video 1: Treatment Approved. Now what? Advocacy Training Session 1
This session explains what happens after a treatment is approved and why approval does not always mean immediate access for patients in Canada.
What this video highlights:
- How drugs are approved and reimbursed in Canada
- The roles of Health Canada, PMPRB, CDA, and INESSS
- Provincial reimbursement negotiations and listing agreements
- Private insurance and other access considerations
- How advocacy and patient input can influence access
- A short segment explaining why approval does not automatically mean access
- A short segment outlining the Canadian review and reimbursement pathway
- A short segment on where patient advocacy fits into the process
Video 2: Advocacy Training #2 Your Voice Matters! How to Become an Effective Advocate
This session focuses on how people with lived experience can participate in advocacy and help move conversations forward with public and private decision makers.
What this video highlights:
- Real patient stories of advocacy in action
- What advocacy is and why it matters
- How to build and implement an effective advocacy plan
- How to engage with private payers and decision makers
- Ways to overcome barriers and keep the conversation going
- A short segment explaining why patient voices matter
- A short segment on how personal stories can influence policy conversations
- A short segment with practical tips for becoming a more effective advocate
If you would like guidance in preparing for a meeting or writing a message, CanPKU+ can provide educational support and background information relevant to current policy discussions.
CanPKU+ participates in public policy processes in a non-partisan manner consistent with its mission to support individuals and families affected by PKU and allied disorders across Canada.