Advocacy

Migraine Canada - Community Engagement & Patient Advocacy

Migraine Canada advocates on behalf of the 4.3 million (12%) of Canadians affected by migraine and headache related conditions.  We are working closely with healthcare professionals and governments at all levels to engage & educate the public and government bodies.  System-wide improvements in care, services and treatment are a priority for Migraine Canada.  All patients deserve affordable and equitable access to care, services and medication.

We are actively working to achieve our mission but need your help. Your voice is powerful and only you can share in detail how debilitating and serious this condition really is!

To improve the lives of Canadians with migraine and other headache disorders through awareness, support, education, advocacy and research

We believe that promoting knowledge and understanding of migraine and headache disorders will eliminate stigma and help decision makers and governments make educated choices about healthcare priorities and spending.

We are advocating for the community by:

  • Sending letters and participate in meetings with all levels of government (Federal/Provincial/Territorial), including bureaucrats and politicians (decision makers).
  • Sharing with Canadians how the healthcare system works; what is broken and how we can collectively influence change that will improve health outcomes.
  • Informing & educatating the media of issues in migraine care.
  • Participating in campaigns and meetings on patient access policies across all levels government.
  • Identifying opportunities to develop relationships with influential people to shape change.
  • Submitting formal patient input to institutions (pCPA, CADTH, INESSS and provinces as appropriate).
  • Informing and educating insurers and employers about the impact migraine has on the workplace and associated costs of not effectively managing.

We need your help

Anyone can do this!

Make YOUR VOICE HEARD!

Your voice is powerful and only you can share in detail how debilitating and serious this condition really is!

Take the time to read through the information giving the tools and resources to feel confident. Anyone can be a successful advocate!

We need your help

Through our automated platform you can tell your provincial government representative new medications to treat migraine must be included on all provincial formularies across Canada, including federal programs (NIHB and Veterans Affairs). Migraine patients have not had access to new, effective medications in decades. Our community deserves equitable access to medications and care.

Join thousands of Canadians across the country who are speaking out about access to medications, services, and care (including CGRP’s, Botox, gepants, etc).

We have made the process simple for you:

Step 1.

Step 2.

Once your postal code is entered, your local official contact information will pop up. Simply select the government official you would like the email to be sent to. Your options will be your local representative and/or your Minister of Health. We encourage you to select all three.

Step 3.

We have designed the template letter to allow (and encourage you) to include your personal story/experiences.

Step 4.

In the closing (last) paragraph, if you are only writing to your “local” elected official and are requesting a meeting you can change the content to include this request on the template.

Step 5.

Choose one of our letter templates below

To help you get started, we prepared Letter Templates you can easily send to your government representatives by filling our online form. We have included the following subject letters. Hoover the image below to select the one most relevant to your situation. We encourage to write regularly and on as many topics that you are impacted by.

Hoover the image below to select the one most relevant to your situation.

Latest News!

Patient Advocates :
  We will update this section with the number of letters sent.Number of patient advocates so far:

  • # of current CGRP patients: 3
  • # of patients required to start CGRP: 0
  • # of past CGRP patients: 0
  • # of Botox patients: 0

News :

We will also share information on how our efforts are going.

CGRP product currently covered :

We will update this section with informations on where medications are now covered by provincial programs.

Need More Info
About Self-Advocacy?

Most frequent questions and answers

Better Access to Medicine & Services

We recognize and understand drug plans, both public and private, are dealing with rising costs for medications and services. Because there have not been new medications to treatment migraine in a very long time, there has not been a significant impact on budgets until now. We appreciate that fiscal responsibility is necessary and proactive innovative solutions are needed.  We strive to offer alternative approaches to these critical and growing issues when we meet with decision-makers who are dealing with the rising costs of medications, care, and services. We encourage governments to collaborate with us to understand the environment and adopt best practices to deliver programs to ensure positive health outcomes for Canadians are realized.

In our messaging with government and decision makers, we strive to ensure decisions are made with a clear understanding of potential consequences. What happens when people don’t access safe effective and tolerable medication.  Governments need to be held accountable for the programs and plans they administer and impact not only to the healthcare budget but to other budgets and the constituents living in their province.

Why Take Action?

“People with migraine and headache conditions are the experts on living with this disease. No one can share your experience and articulate it better than you!”

The voices of people living with, or impacted by, migraine and headache conditions are the most important to be heard. It is the people, like you, living with chronic disease who are directly affected by health policies. As a person living with a chronic disease, you can provide important perspectives that, too often, are not heard resulting in uninformed decisions being made.

It is the individuals who are personally impacted by migraine and headache diseases who first hand experience the strengths and weaknesses that exist in our Canadian health care system. It is you who navigates the healthcare system daily. It is you who knows about the importance of being able to access the most effective medicines. It is you who knows how your quality of life — your ability to work, care for your family, and participate in society is affected.

It is important people who are personally impacted participate in self-advocacy. The term self-advocacy, which means speaking up for oneself and one’s interests, is used as a name for civil rights movements and mutual aid networks for disabled people.   Look for ways to have your voice heard – your personal story heard. There are several ways to be heard and we encourage you to take every opportunity available to advocate for change to improve health care and services impacting your life. In addition to writing emails, you can advocate to government (provincial and federal) through the media (ie. letters to the editor, television, or radio interviews). Your role as an advocate begins with being proactive, knowledgable and empowered.  Self-advocacy is a way of reaching out to others and explaining your condition and experiences to family, friends, co-workers, employers, and even strangers.  For many it is rewarding and therapeutic.  Self-advocacy will help chip away at eliminating the stigma and discrimination people like you encounter daily.

Discrimination against people diagnosed with migraine and other headache conditions occurs on many different levels — from friends thinking migraine is a bad headache and will go away if you take Tylenol or Motrin; to emergency room personnel being unsympathetic; to government denying reimbursement of effective treatment options. Together we can stop the stigma and make people understand the facts.

Many people living with migraine face discrimination at work. There is a stigma attached to chronic diseases like migraine that discourages employees from disclosing their medical condition to colleagues and employers.  Many employees are worried that disclosure could have negative consequences like loss of career opportunities or perhaps termination of employment.

Providing proper treatment and care for people with chronic diseases like migraine makes financial sense. We know that government is always looking for solutions that make financial sense, and we believe that creating a health care system that provides the best possible treatment and care to people living with chronic conditions like migraine makes economic and social sense.

We hope you will join us to make sure that the decision makers and people who have influence are receiving the facts.

As mentioned above, it is the people living with or impacted by chronic conditions like migraine who are, and must be, your own best advocate. It is you who knows better than anyone else what it is like to live with migraine. It is through sharing your personal story and experience that you can help your family, partners, work colleagues, community leaders and elected officials understand how their actions impact individuals like yourself.

Learning to advocate can be difficult for many people. It isn’t something that comes naturally for most people.  Everyone can become an effective advocate over time. It’s important to realize you have the most important and valuable tool you need – your personal story, your personal journey, and your personal experiences. No one understands migraine better than those who live with it every day. You are the expert. It is through your sharing firsthand lived experiences to the public, media and elected officials you will play a critical role in shaping legislation and policies that affects the community.

Expanding access to medications, care & services is one of Migraine Canada’s policy priorities.

As a community, together with a robust and coordinated campaign, we can achieve all of our shared goals. Working collaboratively, and diligently, we can improve migraine care in Canada.

Migraine Canada has developed a toolkit with information that will help you self-advocate. It’s important to remember that anyone can become an effective advocate. We have provided resources to help you identify the key stakeholders and influencers in your region and how to communicate to them.

It doesn’t matter which channel you decide to use. You can choose to do more than one initiative. Choose the channel that feels most like you and what you are comfortable with. What’s important is that you speak up for yourself and the broader migraine community.

There are several ways you can advocate (click on the option for more information):

Develop your key messages

Carefully frame your messages:

  • Develop 3 key messages that explain the salient points of your issue in simple language
  • Request a meeting with your representative or call to action
  • Each message should be 25 words or less
  • Be clear, compelling, concise, and consistent
  • Have someone read your email/letter before sending
  • If you are meeting in person, practice presenting your 3 key messages

Determine your “one” ask

Define what your objective or goal is:

  • ONE ask – you are going to ask for what you need (this cannot be a list. It must be one thing only)
  • You may need to make a choice and prioritize what is the most important issue you have right now.
  • Build your “ask” into your “call to action” key message to help ensure it is delivered
  • Explore opportunities that might make your “ask” timely (is there an election, are medications currently being reviewed or negotiated).

Preparation & Follow-up

  • Request a meeting or expectation of a response to your email with your representative by email (or letter) and follow-up by phone or another email.
  • If you have a meeting, do your research, know your issue, and try to learn about your Gov’t representative. You may have something in common.
  • Prepare a “leave behind” (Migraine Canada has credible information you can download or refer to.)
  • Take notes to use when following up
  • Send a thank you letter and follow up on any information

Tips for a productive meeting:

  • Develop a connection (maybe something you have in common)
  • Ask if they know about Migraine and find out their connection (if any)
    • Assume they know nothing, and you are the expert
  • Introduce your issue(s)
    • 30 second pitch of the issue
  • Present a solution – have ONE ask

Together, our voices can influence policies that have the potential to affect people with migraine and their loved ones. We look forward to advocating with you.

Remember – If you have any questions, don’t hesitate to reach out to us at info@migrainecanada.org

Meeting in Person

Meeting in person with your elected official (or virtually) is preferred when possible. It provides you with the opportunity to share your story face-to-face. It gives elected officials and their staff an opportunity to ask questions and have an in-depth conversation about the issues important to you.

We recommend meeting with your elected official at their constituency office vs in their government office which is generally less convenient. Meeting at their constituency office will likely provide you more time and attention from your elected official.

Elected officials are in their home ridings during recess periods (times when Parliament or Legislature is not in session). These are the best times for meetings to be held.

If you’re not able to or comfortable with an in-person meeting, that’s okay. Choose the advocacy option that works best for you (email, phone).

If you are choosing to meet in-person, here are a few tips to help:

  • You will need to send an email to request a meeting. This can be done through Migraine Canada’s database.
  • You can also check your elected officials website for an electronic meeting request form.
  • You can also call the office directly to ask for a meeting.
    • It is important to call several weeks in advance to request your meeting. Their calendars fill up very quickly.
    • The scheduler will ask you about the purpose of your visit.
      • Tell them the 2-3 issues (no more).
      • Sharing your issues ahead of time will help the team make sure the person working on health topics is present at the meeting and had time to do some research.
      • It’s not uncommon that the elected official isn’t available to attend the meeting and that you will get time with an appropriate staff member responsible for health issues.
      • Speaking with staff is just as important as speaking with an elected official because they play a significant role in shaping the elected official’s policies.

Preparing for the meeting

  • Have your messages and call to action written down.
  • Review your messages several times so you feel comfortable speaking on the topic.
  • Practice with a friend or family member.
  • Print any information or handouts you want to bring and leave behind.

During the Meeting

  • Be patient. Elected officials and staff often have very tight schedules and it’s not uncommon for them to be late or for meetings to be interrupted. Don’t take it personally.
  • Be respectful of the time. Remain flexible. If the elected official arrives in the middle of the appointment, continue the conversation, and allow them to ask questions if needed. If you discover your elected official is not able to join the meeting, don’t be discouraged. Remember, educating staffers on your needs is critical. Tell your personal story. No one is in a better position to educate elected officials on migraine better than those who are living with it every day. Sharing your experiences will help your member understand how public policies impact the community. Stay focused and keep your conversation limited to one or two policy issues (ie. listing a medication on the provincial formulary) and be specific about what you are asking them to do. Have your key requests organized so you can present them concisely. Be honest. Keep politics out of it. Your elected official may not support the issues you cover in your meeting, but they could be your ally on future topics. Do not discuss elections or campaign support and respect the elected official’s political views. Say thank you and leave any information you feel relevant (Migraine Canada has lots of information on the website you can download and print).
  • Be sure to get business card(s) so you can stay in touch.
  • After the meeting be sure to follow up and thank who you met with for their time. Include a summary of what you discussed and any action items.
  • Elected officials are often eager to take pictures with their constituents during meetings, so feel free to ask for a shot and then attach it to your social media accounts!

Making telePhone Calls

Telephone calls are another way to interact with elected officials. Every elected official has an office near you with staff to stay on top of matters relevant to constituents. If you make a call and no one answers, be sure to leave a message. Almost always the call will be returned. If it’s not returned call again.
If you are choosing to contact your elected official by phone, here are a few tips to help: 
  • Plan ahead before you call. Be prepared.
  • Have your messages and call to action written down (it can even be helpful to make a script to follow if you aren’t confident with bullet points). 
  • Be sure to: 
    • Introduce yourself and make sure to mention that you are a constituent.
    • Ask to speak to the staff member who handles health issues. If this individual is unavailable be sure to leave a message (preferably a voice mail). 
    • Be sure to stay focused and on topic. 
    • Be concise and use language you are comfortable with. 
    • Get to your key message and call to action quickly. You may only have a few minutes to communicate your key message and call to action. 
    • Ask for a written response followup.
    • Be sure to leave your contact information so the staffer can update you with the elected official’s position or any action taken. 
    • Be patient for receiving a response. Elected officials receive many calls, emails, letters, etc. It’s not uncommon that it could take several weeks. But follow up if after several weeks go by with no response.
Sample Script:
“I am a resident of (insert city/town) and I’m calling to ask my elected official (MLA, MNN, MPP) to support reimbursement for (insert medication name) on the (province) drug program. (Insert drug name) is an effective treatment option for Canadians living with migraine. Migraine is a painful and disabling condition. I have lived with [insert your story/situation].Your support will help residents living with migraine in (province) have access to new effective, safe and tolerable medication. Thank you in advance for your support!”

Sending Emails

Emailing your elected officials is a convenient and effective way to make your priorities known. It is the channel to most likely to get a quicker response. Elected officials want to hear their constituents’ concerns and issues. This can help them understand and take into account when involved in policy decisions. You can encourage your elected official to look to you as a resource for information on policies impacting people with migraine because of your lived experience. You may find it surprising, but all constituents correspondence is read and responded to.

Migraine Canada has provided template emails that you can work from or you can draft something unique. We have developed several different letters for you choose which is best suited to your situation. You can also just use what we’ve drafted to spark your own ideas.

Our online tool allows you to contact your elected official in a matter of minutes and has all the contact information. The platform is designed to automatically send your email to your elected officials’ office once you have finalized your message and hit “send”.

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