October is here and along with a welcomed crisp in the air, so is Breast Cancer Awareness Month. As parades of pink hurl forward in their quest for a cure, too often we’ve seen women with metastatic breast cancer (MBC) kept in the shadows. These women, whose cancer has spread from the breast and been found in other parts of their bodies, have unique needs and concerns that too often aren’t represented, understood or acknowledged.
Young women with MBC live with uncertainty, going from scan to scan, no more than two or three months at a time. They try to find a balance between living in the moment, but also struggle making plans for the future. They often live in conflict of achieving their “bucket list” or life legacy while balancing the needs of their families and loved ones, and their health.
Women with MBC continuously need treatments that help keep their disease controlled. Until there is a cure, it’s treatments that give time and help them live a better life longer. And while research continues to show progress, the price of these new treatments continues to rise, resulting in an unsustainable health system. That leaves women with MBC waiting longer for new treatments to be available in Canada compared to other countries.
Right now, they are waiting for Ibrance. It was approved by Health Canada in March, 2016 and recommended for public funding in November, 2016. We were proud to have provided our input during that stage, interviewing breast cancer patients about their experience with Ibrance and their experience living with metastatic breast cancer. We spent many hours preparing the submission so the “patient voice” could be heard and considered. But that was a year ago.
Now women are waiting for the manufacturer, Pfizer Canada, and the pan-Canadian Pharmaceutical Alliance (a committee representing the provinces) to negotiate a price and make it available to patients. This is the final step in the approval process. Yet it’s the one that lacks transparency and does not have accountable timelines – leaving women with MBC in the dark.
The status quo isn’t good enough when you are living with the uncertainty of MBC. That’s why Rethink has launched a petition to ensure the voices and values of women with MBC are included whenever decisions about their health are made.
If you do one thing during Breast Cancer Awareness Month to help women, I hope you will add your name. Our goal is 10,000 signatures. It’s about women today, and it’s about women in the future. It’s about making our health system better for everyone. And it’s about a commitment from all of us to stop leaving #MBCinthedark.