Making MBC Count

Hi everyone,

It’s been a long year and a blurry blink too. We all know time has become a very weird thing. For anyone with breast cancer, time takes on new meaning. And, we’ve learned over years of working with young women with metastatic breast cancer that they need much more of it. The average survival for women with MBC is only 2-3 years from diagnosis. For me, that stat represents the most glaring unmet need in breast cancer. It’s why Rethink and organizations around the world are part of a global alliance determined to help double median survival time by 2025.

But where do we start? Our big priority right now is Making MBC Count. We need to make the MBC voice and experience count in more places. In data collection. In clinical trials. In research. In the community.

Data collection may not sound sexy but it’s actually vital and where our idea of Making MBC Count begins. Because you count when you are counted.

Right now, we don’t know how many active MBC cases there are. Estimates can be made but we don’t know who these women are? How many are under the age of 50? What is their experience? Or how long they live?

Without this data to mine, we cannot truly understand MBC. We don’t know precisely what solutions to offer or where to push for change to improve outcomes and improve survival.

It’s taken me a while to understand this challenge. After all, we’re tracked a lot in daily life through our digital footprint – we live in a world where “Big Brother is always watching” has morphed into “Alexa is always listening.” We provide a healthcare number at the doctor and everything is captured in our file at each visit. But the individual electronic health records aren’t connected to the registries at cancer centres, which feed stats about cancer up the chain to national and global cancer statistics. Many of the details we need to know aren’t captured. Most cancer registries around the world collect information about initial cancer diagnosis and mortality but do not document recurrences, which represent the majority of MBC cases. 

We’ve done some fact-finding around this issue, including calls with national stats departments, provincial cancer agencies, and drug manufacturers, and zooms with leading medical oncologists. The issues are known and some solutions being discussed. We need to get noisy about it to help push people along. Because even in a pandemic, we cannot stop pushing for progress for MBC by Making MBC Count. In fact, the pandemic makes collecting more robust MBC data more urgent.

We are calling on health sector leaders to leverage the power of data to better understand the MBC experience and improve the survival of women living with MBC.

We’re looking for 5,000 more Allies to stand with women with MBC and #makeMBCcount. If you’re already one of our Allies, thank you. And can you try to recruit even one more for us before Metastatic Breast Cancer Awareness Day (Oct 13)? Because the more voices we have when we speak out together, the more powerful we become.

We need you to #makeMBCcount. – MJ DeCoteau