Engaging with elected officials is a cornerstone of effective advocacy. Whether you are living with ALS, a caregiver, or someone who wants to see a better reality for people affected by this devastating disease, your voice matters. This blog post breaks it down to the basics and how you can take action and drive change.
What is advocacy and why does it matter?
Advocacy is about taking action in support of a cause, policy, or idea. It is a strategic and consistent effort to create change, whereby awareness and support are built over time. It involves raising voices, sharing lived experiences, and building momentum to address unmet needs.
A key part of effective advocacy is building positive relationships and trust with decision-makers with the goal of showing them why your issue matters and how their support can make a difference.
For the ALS community, advocacy is essential in bringing attention to a disease that is often not well understood, ensuring that the voices of people affected by ALS are heard in the rooms where decisions are made. It drives the changes needed to improve access to therapies, care, investments in research, and pushes for policies that reflect the realities of people living with ALS.
What impact does advocacy have?
There are many examples of tangible results from advocacy efforts of the ALS community – both in Canada and around the world.
In the fall of 2024, the Government of Ontario funded the Ontario Provincial ALS Program after two and a half years of sustained advocacy by ALS Canada in partnership with Sunnybrook Health Sciences Centre, the five regional ALS clinics in Ontario, and the ALS community. People living with ALS, caregivers, and loved ones engaged with elected officials, reached out with emails of support, requested meetings, and shared their personal stories to show why this investment was urgently needed. The success of the Provincial Program is a great example demonstrating that advocacy requires a sustained effort and builds awareness and support incrementally.
Public reimbursement of Radicava (edaravone) in all provinces and territories across Canada was also made possible through community advocacy. As the first therapy to be approved by Health Canada in nearly 20 years, its public reimbursement was driven by the advocacy of more than 3,000 Canadians who sent letters and met with their provincial elected officials urging them to ensure timely and equitable access to the treatment.
How to know which level of government to reach out to?
In Canada, responsibilities are divided between federal, provincial, and territorial governments. Each level has a different role in shaping policies, funding initiatives, and delivering services. Knowing who does what is key to making sure your advocacy efforts reach the right people.
For the ALS community, this matters when pushing for issues like access to therapies, home and community care, clinical trials, assistive devices, and research funding. Depending on the issue, you may need to engage with your provincial representative, your Member of Parliament (federal) or both.
The provincial and territorial governments are primarily responsible for delivering health care services. This includes:
- Managing and funding hospitals, clinics, long-term care facilities, and home care programs
- Providing coverage for medications through public drug plans
- Funding mobility aids, communication devices, and other medical equipment
If you want to advocate for improved access to care (e.g. in a long-term care or hospital setting), home care support, assistive devices, or medications under provincial drug plans, reach out to your elected official in provincial government.
Find your Member of Provincial Parliament (MPP) if you are in Ontario, Member of National Assembly (MNA) in Quebec, or Member of Legislative Assembly (MLA) in all other provinces and territories:
The federal government sets national health policy, regulates drugs and medical devices, and provides healthcare services to First Nations, Inuit, Métis, and Indigenous populations. It is also responsible for:
- Drug approval process through Health Canada
- Funding health research
- National social assistance programs (i.e., Disability Tax Credit, Employment Insurance benefits)
- Transfer payments to provinces for healthcare delivery
If you want to advocate for ALS research funding to identify treatments, improvement to social assistance programs, or increased clinical trial capacity, reach out to your Member of Parliament.
You can find your Member of Parliament here.
Ways to engage with your elected officials
There are several ways to connect with your elected officials and share why issues affecting the ALS community matter. Below are a few practical tips to help you take action. You can also refer to our Advocacy Toolkit for additional resources to support you along the way.
- Elected officials often attend community events hosted in their ridings.
- You can attend these events, introduce yourself and share your connection to ALS, and highlight why your issue matters.
- Consider printing out the Facts about ALS and ALS Canada sheet in the Advocacy Toolkit to hand to the elected official/staff as a leave-behind.
- Sharing your story through an email or letter is a meaningful way to create a personal connection and build trust with elected officials.
- Begin the email or letter by introducing yourself as their constituent, followed by your connection to ALS and how it has affected you. Clearly define the issue you’re raising, highlight why it is important, and what you’re asking them to do.
- Check out our Advocacy Toolkit for a more detailed guide on telling your personal story.
- If you are active on social media (i.e., Facebook, Instagram, X), you can share your story online and tag elected officials to raise awareness of the realities of ALS.
- There are several hashtags you can use to increase engagement with your post: #aWorldFreeOfALS #ALSstories #ALS
- Tag @ALSCanada so we can stay looped in on your advocacy efforts.
- Request a meeting with your elected official or their staff by reaching out to their constituency office in your community.
- This is a mutually beneficial process as elected officials see their constituents as a vital source of information to learn about the needs of their communities.
- Before your meeting, take time to clarify your key points and prepare what you’d like to say.
- Our Advocacy Toolkit includes a Sample Meeting Flow to help you develop a clear meeting structure.
ALS Canada is here to support you.
If you have any questions about how to engage with an elected official, want to learn more about advocacy, or to let us know how you are getting involved, please reach out to advocacy@als.ca.
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