Why we launched #MakeMeCount for BCAM 2024

Hi there,

Breast Cancer Awareness Month is here. Every October, the media cycle and public focus shifts ever so briefly to our cause and that can bring on a mix of emotions – for our community, our team sure feels it, and myself, too. “Yay” that we are being seen and talked about. But “ouch” when the story is full of gaps.

And that’s a big part of why we launched #MakeMeCount today.

That juxtaposition between the general public’s perceptions of breast cancer and the reality of the community’s experiences can be quite jarring and exposes the gaps. The dominant breast cancer story has a lot of gaps because our cancer data has gaps. It’s incomplete. It’s reported on at too high a level.

1 in 8 women will develop breast cancer in their lifetime. 
30,500 women in Canada will be diagnosed with breast cancer this year. 
5,500 women in Canada will die from breast cancer this year. 

The public is often familiar with these important but quite generic stats. But we know there’s a lot more to the breast cancer story. Because we have been immersed in both the cancer care system and your breast cancer stories for years. We’re on the ground with the community, supporting and advocating for the real people the data represents. Real people with their complex situations, their many layers and dimensions. We also know that no one wants to feel like just a number in the cancer care system. But they do want their experiences to “count.”

Rethink wants more human dimensions to be counted in the data. Because you count when you’re counted.

Right now, we provide a healthcare number at our cancer centres, and there’s a file where everything is captured each visit. That means every breast cancer patient is a data point at their cancer centre, and some of that data that gets fed up the chain to their province’s cancer agency. Eventually a wee bit of their info makes its way to our federal breast cancer stats. So, yes, every breast cancer patient is a stat. But they’re more than that. We need to get at least some of the “more” to make its way into our provincial and national breast cancer stats.

With #MakeMeCount, we are calling out the need for improved reporting on metastatic recurrence data, race-based data, and social determinants of health data within the breast cancer community.

Please sign our petition today.

Why? Because when we only ever hear about the high-level statistics, we are missing out on understanding the inequities and unique challenges people experience. We don’t know how many metastatic recurrences there are. We don’t know how many Black women are diagnosed in Canada. We don’t know how Indigenous communities are impacted. We don’t have data on outcomes for sexual and gender diverse groups. And we don’t know how disabilities or income play a role in someone’s care. And more! We need that understanding to create targeted solutions to improve health equity. Right now, we can guess at who is having worse outcomes and why, but guessing isn’t good enough.

We need Canada’s cancer data to go a few layers deeper in terms of analysis and reporting. Breast cancer stats need to say more!

I’m so grateful to the “stat stars” of our #MakeMeCount campaign who were willing to get out of their comfort zone, and step in-front of a camera to help us make this point. Like Vesna, who was diagnosed initially in 2012 but has been living with metastatic breast cancer since 2017, following recurrences to her lungs, bones and lymph nodes. We don’t report on metastatic recurrence data in Canada, so our breast cancer stats have her representing in the “early breast cancer success story” bucket. Meanwhile, she’s just marked her 100th round of treatment for MBC. Vesna is grateful for every single one of those treatments, giving her the disease stability she needs to make milestones. At the same time, to say it’s not been easy living with MBC is beyond an understatement. It makes no sense that she’s currently considered an early breast cancer survivor in our data. Thank you, Vesna, for your commitment and years of working with us on this issue.

Thank you to Nicole, a young Black woman, Ashley, a young Indigenous woman, and Spencer, a trans man for helping bring this campaign to life. And then there’s Clare, who had a metastatic recurrence in 2022 and also lives with disabilities, both which are not currently counted. Thank you, Clare. There are so many intersectionalities and together, our “stats stars” are helping us highlight and humanize this issue. And most importantly, helping create some urgency and action.

The time is now. There are important signs that the political will on improving cancer data is building.

You’ve heard us talking about the need for metastatic recurrence data for years. Internally, we started exploring this issue as far back as 2015. Silly us, in those early days, we thought the issue could be fixed behind the scenes without needing public pressure on decision makers. After going around in circles with emails and calls to national stats departments, provincial cancer agencies, drug manufactures, researchers and oncologists, in 2020, we launched #MakeMBCCount.

It was also in 2020 that we started exploring the need for race-based data, meeting with Gideon Quaison, the lead for the Black Experiences in Healthcare Symposium, and health equity researchers like Dr. Aisha Lofters who is now on our Board of Directors. With the rise of social justice movements that summer, we saw members of our community resharing social media posts that Black women having poorer breast cancer outcomes. What was being reshared by Canadians were posts from organizations in the United States using U.S. stats. Racialized data isn’t collected in Canada, leaving us in the dark in terms of accurately understanding the effects of breast cancer on People of Colour and Indigenous women in Canada, including whether race and/or systemic racism impacts experiences with diagnosis, care, and rates of recurrence or metastasis. We know anecdotally through individual conversations of challenges some of you have had in getting diagnosed and navigating treatment. Challenges that, unfortunately, seem connected to your identity.

Uncovered: A Breast Recognition Project, created by Michelle Audoin and Rethink Breast Cancer, shone a light on voices and experiences of Black, Indigenous and People of Colour in Canada. The Uncovered Wish List that participants developed in the 2021 edition included a call to action for Canadian race-based research and data. Many other organizations have also been calling for action on this issue, organizations working in cancer, and many in other areas of healthcare.

Data is a topic at every cancer conference I’ve been to the past few years and both provincial and federal governments bodies are working on the issue. We were really pleased to contribute to the pan-Canadian Cancer Data Strategy. Implementation is no easy feat but the longer it takes to address this issue, the bigger the problem gets to fix. What’s needed is some energy and urgency now.

So, help us capitalize on the current political will to improve cancer data.

Please help us show governments that our breast cancer community cares about this issue by signing our petition. Help make more breast cancer patients “count” in Canada’s cancer data reporting.

Thank you and please do all the things! Sign the petition, share it, and check out and share the videos of our fantastic “breast cancer stat stars” who truly are the rock stars of this campaign. And please like, save, share the #MakeMeCount Instagram posts. It all helps!

We are so grateful – together, we can ensure a more complete story is told in the Breast Cancer Awareness Months to come. And more importantly, we can have the data we need to identify care gaps and advocate for targeted solutions to improve the experiences and outcomes for all breast cancer patients.

P.S. Let me know what you think of the campaign. If it resonates with you, I’d love to know why.

MJ DeCoteau
Rethink’s Founder + Executive Director