Metastatic Breast Cancer Awareness Day: Standing Up for Each Other When We Need It Most
Today is Metastatic Awareness Day. I wish we didn’t need this day but until women no longer die of breast cancer, until science can keep all breast cancer cases contained to being early stage, until breast cancer is over, we do. We need this day to recognize the unique needs and concerns of women with metastatic breast cancer (MBC) that are invisible, misunderstood or unacknowledged – especially against the backdrop of the pink ribbon and what some even call out as the pink nausea that is October.
I’m feeling such a swirled up mix of emotions these days. I’m just back from presenting our MBC Advocacy work at the World Cancer Congress in Malaysia. So proud to share some best practices and showcase what we’re accomplishing, but the disparities around the world when it comes to MBC are shocking. Last night, we had our Boobyball event in Toronto. How can you not be inspired by an event that was started 17 years ago to support a 23 year old diagnosed with Stage 4 who was with me on stage last night? Yet there were faces missing last night, friends that are gone from MBC. And, I know that even our most positive thrivers need us. Need you.
With this mix of emotions, and holding the thrives in my mind, here’s what I’m celebrating today:
We got our MBC Advisory Board off the ground and they’ve hit the ground running! Last April, we brought together these rockstar metsters and allies to further hone our strategy, help shape and curate MBC-specific resources, provide grassroots support to advocacy efforts and more.
2018 has also been a promising year for new MBC treatments. More tools in the toolbox. Rethink plays a behind-the-scenes role in bringing the patient’s voice forward when new drugs are evaluated. Ibrance, the first new treatment for MBC in many years, is now publicly funded in many provinces. A second treatment called Kisqali is well into the approval process and will hopefully be available in 2019.
We got an advocacy win with our #MBCintheDark campaign. Thanks to the unwavering support of thousands, our calls for more transparency and accountability have been heard. The pan-Canadian Pharmaceutical Alliance (pCPA) has recognized the need for better communication and more transparency. For the first time, they have set benchmarks for the timelines to negotiate drug prices and sign a letter of intent. This is a significant step out of the dark and in the right direction. We have some streetlights on now.
I’m grateful for the support Rethink’s had in making this progress. And, I’m asking everyone for one more, pretty simple action.
Benchmarks are a start but they aren’t enough – we will need to hold elected officials and industry to account and make sure plans and promises translate into real change.
This October, we’re calling for 1,000 allies to sign our pledge to help women with MBC when they need it. If pCPA or industry don’t meet their benchmarks, we will call on our allies to sign petitions and write letters. If they leave us in the dark, we will call on our allies to demand action.
When we all work together and stand up for each other when we need it most, we are positioned to make lasting change.
Can I count on you to sign the pledge and be an ally to Canadian women living with MBC? We need you to keep this going. – MJ DeCoteau