Advocacy Toolkit

"A guide to making your voice heard in the public policy process"

Letter from Cheryl Koehn, Founder and President, Arthritis Consumer Experts

To arthritis patients across Canada:

Whether public policy and advocacy work are second nature or you’re just getting started, you can be an effective advocate. You already have the most important and valuable tool you need: your personal story. No one understands the ins and outs of arthritis better than those who live with it every day: the arthritis consumer expert. By translating those experiences to elected officials, media or the public, you can play a critical role in shaping legislation and policies that affects the arthritis community.

Ensuring the development of improved arthritis models of care for those living with arthritis today is a central focus of ACE advocacy. But models of care isn’t enough. This is just one of ACE’s for policy priorities, along with expanding access to medicines, addressing health inequities and removing barriers to virtual care. And to achieve all of our shared goals, a robust and coordinated advocacy effort is key.

Anyone can become an effective advocate. ACE can help you identify key stakeholders and influencers and how to communicate to them. It can be as simple as picking up the phone or sending an email to your provincial or federal government representative to let them know how their vote will directly affect you. Or, you can visit your elected officials at their office or at a town hall meeting. Social media is a good way to connect with fellow patients. And, you can write about arthritis-related policy issues for your local news outlet.

This toolkit is full of resources designed to bring help you advocate on current arthritis policy issues affecting you. No matter what you decide to do, it’s important to speak up for yourself and the arthritis community.

Our collective voice can influence policies that have the potential to affect people with arthritis and their loved ones. We look forward to advocating with you.

Sincerely,
Cheryl Koehn

P.S. If you have any questions, don’t hesitate to reach out to us at feedback@jointhealth.org

Building relationships with elected officials

Establishing relationships with elected officials is the foundation of advocacy. While this can seem intimidating, it’s actually quite easy! Policymakers want to know their constituents and better understand voters’ concerns. By reaching out regularly and sharing your story, you can develop a rapport and educate these individuals on what it’s like to live with arthritis.

It’s also critical to make connections with the political staff and bureaucrats who work on health issues because they advise elected officials on policies related to access to care and what’s important to their constituents.

There are many ways to develop and maintain relationships. Different people have different styles; some want to take time to compose an email and others prefer to pick up the phone. Still others want to show up on their elected official’s doorstep. Choose what works best for you and what you feel comfortable doing. The most important thing is to find a way to tell your story.

The following tips can help you get started.

How to tell your story

When emailing, calling or meeting with your elected officials and their staff, it’s important to talk about your experience with arthritis and how it relates to your everyday life — that’s what we mean when we say, “tell your story.” Sharing your story puts a very real face on the issues that are important to our community, and it helps elected officials understand how their actions and votes impact their constituents living with arthritis.

Below, two advocates share examples of how they’ve told their story to elected officials. Feel free to use these as a starting point to begin crafting your own narrative, which you can employ when advocating in person, over the phone or in writing.

“Over the past five years, I have seen my partner struggle to gain reimbursement for the medications he and his rheumatologist feel he needs. Expanding use of biosimilars is a direct answer to this problem, clinically and financially. By implementing a biosimilar transition policy, the Ministry of Health can ensure continued reimbursement coverage for patients transitioned to the newer biosimilar version of the originator and that reimbursement for other patients becomes available. Biosimilars transition policy shows how coverage for a few, turns into coverage for many. All of society benefits.”

– psoriatic arthritis patient in Alberta

“As soon as my rheumatoid arthritis started, my joints were getting damaged. That’s why rheumatologists aim for diagnosis within six weeks of the first symptoms. Based on my lived experience and on the science I’ve read, rheumatologists should see any patient with suspected RA within two weeks – that’s how convinced researchers are that delay is bad for patients. And it’s not just about mobility; it’s about years of life too. My diagnosis of RA is associated with an average reduction in life expectancy of 10 years – early diagnosis and treatment can give some, if not all, of those years back.”

– rheumatoid arthritis patient in Ontario

Download resources on methods of advocacy