How We’re Advocating for our Community this World Cancer Day

Rethink’s raison d’etre is to help young people with breast cancer live better and live longer. What does that look like this World Cancer Day, a year into a pandemic that is still far from under control?

First and foremost, it’s an opportunity to remind everyone that cancer is still happening. I know you know that. But does the average person? Do our elected and un-elected decision makers?

Cancer doesn’t stop in a pandemic. Cancer will grow even if screening programs are slowed down to stop the spread of COVID-19. Cancer will grow even if we avoid booking appointments to have a symptom checked out or can’t easily access digital healthcare. And cancer will grow when patients’ access to the treatments they need is delayed.

Just like the COVID-19 virus, cancer is smart and evolves to persist and persevere. Today, on World Cancer Day, we can get extra loud about what the past year has been like for our community. We can do some persisting and persevering of our own.

Somethings have not changed. Those diagnosed with breast cancer at a younger age have unique needs. Those living with MBC must be counted. And whether early breast cancer or metastatic breast cancer, timely diagnosis and timely access to the most effective treatment are essential to improving outcomes.

A key priority for Rethink pre-pandemic has been addressing the incredibly slow approval process and delays in access to new, innovative cancer treatments in Canada. Our government(s) are stretched managing this crisis, but our advocacy must continue because this work more urgent than ever.

Why?

Since the start of the pandemic, cancer diagnoses have declined by approximately 40% worldwide. Wow. That’s not 40% fewer people getting cancer. That’s 40% having their cancer diagnosis postponed. Canada definitely fares better, but still, physicians estimate they are seeing 16% fewer newly diagnosed cancer patients in their practice compared to the previous year.

Because of this, it’s expected there will be a jump in de novo MBC cases and advanced cases, making it urgent to access life-extending treatments without delay. 

I’m worried.

As one of our MBC Board Members mused about the impact of the pandemic on cancer care a few weeks ago, “Time will tell, but without data, will it really? I’m not sure.”  

So what are we doing next?

In Ontario, we will continue to press for equal funding for Take-Home Cancer Treatments. Treatments like Ibrance, Kisqali, Verzenio—all tablets taken at home—are transformative treatments that are dramatically improving outcomes for much of the MBC community. The data showing their dramatic life-extension in the MBC setting is well established and the newest data is showing they extend life in the early breast cancer setting.

Yet, we continue to hear from those with MBC living in Ontario who had to spend weeks to months fighting with their insurance company or fill out forms to access these treatments, which their oncologists say is their best chance at controlling their cancer. Even though these treatments are approved, funded and listed on the formulary by the province. And this overwhelming paperwork and draining self-advocacy comes at a time when they are already trying to process the news of their MBC diagnosis itself. It was unfair before the pandemic and it’s now even more urgent to solve this issue, given the fact that even more people will be entering the system at advanced stages of breast cancer and the impact of unnecessary administrative delays are compounded.

We’ve been making these points in our 20+ advocacy meetings this past fall on the issue, meeting with all parties to share our community’s experience and gather intel. We’re now regrouping with leadership at the Cancertainty Coalition. We’re re-strategizing. We’re drafting our submission to ask for equal funding for take-home cancer treatments to be included in the upcoming provincial budget.

Nationally, we are pushing forward on research and partnerships that will drive more robust MBC data collection. We talked a lot this fall about why MBC data collection is important. Without this data to mine, we cannot truly understand MBC.

We were bolstered by the recent announcement out of the US that MBC recurrences will start being tracked, yet we know our Canadian system is fragmented and lacks a national database system like SEER used in the US.  That said, while this issue may not be turnkey, with more creative thinking (think A.I. and algorithms) and collaboration, it can be done in Canada. We know that where there’s a will, there is a way and it’s mostly a matter of making it a priority. The pandemic has got everyone buzzing about the importance of data and tracking cases so there’s momentum on the topic.

Globally, we are raising awareness of the urgent need for people to get back to cancer care services despite the disruption caused by COVID-19. We’ve joined forces with more than 25 patient organizations across Canada to share the New Normal, Same Cancer campaign. The campaign was co-developed by eight global cancer patient coalitions and AstraZeneca. We’ve been highlighting stories from our community and I want to say a huge thank you to all you who took the time to write us about what your experience has been like in treatment this past year. 

So where does that leave us on World Cancer Day? Continuously committed to advocating for our community.  For better data. For better and faster access to treatments. And better cancer outcomes that help people with breast cancer live better and longer. – MJ DeCoteau     

Want to join our advocacy efforts.  Click here to become an MBC Ally.