What are submissions for? Who asks for them and why?
As part of our advocacy work at the MS Society of Canada, we make submissions each year to various federal and provincial government consultations. For example, during the annual provincial and federal budget cycles, we make submissions detailing how the government could implement the priorities of the MS community in their upcoming budget. We also make submissions to inquiries conducted by organizations and agencies, such as the Canadian Agency for Drugs and Technologies in Health (CADTH) and Patented Medicine Prices Review Board (PMPRB), to ensure the perspectives of those living with MS are represented.
The MS Society also participates when a parliamentary committee asks for written submissions that address any of our priorities, such as employment security, income security, access to treatment, appropriate care and housing, and MS research. Requests for submissions are published on the committee’s website, as are closing dates and updates on the inquiry’s progress. From time to time, the MS Society receives a specific invitation from a committee to make a submission on an issue that the committee feels is particularly relevant to the MS community or where the committee is interested in hearing the views of the MS community. For example, the House of Commons Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA) conducted a study on episodic disabilities in 2019, in which we made a submission and testified at committee hearings. Additionally, we put forward names of people living with MS to present to the committee and were pleased to have three individuals participate in person in Ottawa in November 2019. The committee published a report from the study’s findings, which can be used as a reference in the future when the federal government develops or amends legislation affecting people with disabilities.
When making submissions to agencies involved in the drug review process, our advocacy focuses on ensuring that there is equitable, affordable and timely access to the medicines that improve the lives of people with MS, regardless of where someone lives, how much money they earn or whether they have private drug coverage. We also take every opportunity to make submissions to support the introduction of new disease-modifying and symptomatic treatments. This work ensures that people with MS, their carers and their specialized MS healthcare teams have as much choice as possible in determining a suitable treatment that is accessible, affordable and best suit the individual needs of each person living with MS.
Why make submissions?
The MS Society’s mission is “to connect and empower the MS community to create positive change.” To do this, the organization provides programs and services for people with MS and their families, advocates for those living with MS, and funds research to help improve the quality of life for people living with MS and, ultimately, to find a cure for this disease. We also know that we can’t do this work alone. Decisions made by the federal and provincial governments and their various departments affect the entire MS community. As a result, a big part of our role is providing input to governments by representing the voices of the 90,000 Canadians living with MS and what they are saying when it comes to the issues that impact them, including income and employment supports, access to treatment, care and housing, and funding for life changing MS research. By making submissions that outline these issues, possible solutions and their hopes for a better future, we can ensure the government will hear the MS community and take action to address these challenges.
How do we draft submissions?
Once a decision has been made to participate, or an invitation is received to make a submission, our own internal consultation process begins. The MS Society has well-established positions on a range of topics that impact the MS community. The positions have been developed through years of surveys of the MS community and continuous conversations with key volunteers and community leaders. Our Advocacy team has honed these views to ensure they fit the political context of the day and are framed in a way that makes them as achievable as possible.
With this policy base to work from, we consult on specific perspectives with our staff and volunteers around the country who have specialized knowledge about the topic, such as our MS Navigators from the MS Knowledge Network, our National Government Relations Committee, and more broadly, with the MS community. We also speak with individuals who are informed and passionate about certain issues and put out calls via our social media channels for input. We scan the media, obtain case studies, comments and sometimes hold focus groups. Finally, we review our “key messages” and look at previous submissions to see how the landscape has or hasn’t changed over time. In the end, all this work is brought together into a single submission document.
Working with partners
The MS Society sometimes works with partners, such as other health charities, on joint submissions regarding issues the impact the broader health charitable sector community. For example, throughout the COVID-19 pandemic, several health charities jointly submitted letters to federal and provincial governments to urge more support for health charities in light of the significant decreases in revenue resulting from the move away from in-person fundraising events. We also joined forces with Canadian health charities to advocate for the prioritization of COVID-19 vaccines for vulnerable populations. We make these submissions when we agree with our partners that there are issues of mutual concern and where the voice of the MS community can unite with the voices of other communities, and become louder and more powerful.
Submissions in summary
The MS Society makes submissions to inquiries on issues that impact people living with, and affected by, MS. Submissions are one of our key advocacy tools that allow us to seek opportunities to contribute to policy development in our four priority areas: employment security, income security, access to treatment and appropriate care and housing, and MS research. We will always continue to advocate on behalf of the more than 90,000 Canadians living with MS, their caregivers and families, and the broader MS community, and submissions are an important part of that work.