No Time to Wait: Tackling Metastatic Breast Cancer NOW
Over the past year, some of the brightest stars in our community, daring and inspiring advocates for women with metastatic breast cancer, have died. Their loved ones, including very young children, are struggling to make sense and find a way forward, and so is our community.
As an organization that serves a broad audience of young people, it’s always tricky to address these difficult issues.
We want to show the raw, gritty truth about breast cancer, but we also want to make it accessible so people aren’t so scared that they turn away from the reality of the disease.
The fact that breast cancer can kill you is not something that someone who is newly diagnosed wants to hear. And to be honest, there are those in the metastatic community who don’t want to think about this either.
But we have to talk about it. Rethink has been participating in global discussions about metastatic breast cancer since 2013, and in that time, patient advocates from all over the world have agreed that isolation from the non-metastatic breast cancer community, difficulty finding relevant information to address practical and emotional needs and waning support from family and friends were key issues for women with metastatic breast cancer, regardless of cultural and national differences.
We’ve been working closely with our metastatic women to create new resources to help educate the public and empower those living with their breast cancer. But four years later, they still face barriers to support and treatment. And it’s not just that they’re sometimes left out of the breast cancer conversation or pink marketing materials — they’re also not getting access to drugs and treatments that can buy them a little more time or better quality of life.
Here’s proof: We recently held a workshop with some of the metastatic women in our network, and the one thing we heard loud and clear is that they want more time. Each one has her own reason—to reach a milestone, or simply to be with her family just a little longer. They need treatments that stabilize their cancer. They need treatments that extend life. And don’t forget, it takes time for new and innovative breast cancer treatments to be approved and listed, here more than in other comparable countries.
When it takes too much time for a patient to get her treatment, how can it be effective?
The newfound value that these women put on time is unmistakable, and it’s obvious that there’s still work to be done to dramatically improve the outcomes for women who get the news that their breast cancer has metastasized. In fact, that’s why we’re launching this campaign. We want to make sure that our community really understands the challenges facing women with metastatic breast cancer, and to encourage everyone to hold government and industry accountable when it comes to considering patients’ voices during the drug funding process.
Recently, I’ve been feeling inspired by the work that the still-young women’s movement did to de-stigmatize this disease in the ‘70s and ‘80s, promoting solidarity, providing support for those diagnosed and, most importantly, demanding more. Women like feminist breast cancer activist Barbara Brenner pushed governments, doctors and researchers and industry to address gaps in progress against breast cancer. The early advocates got angry and called BS where they saw BS. And, they made change.
Rethink’s goal is to build an inclusive network where women who are metastatic feel supported by those in the early stages, especially since becoming metastatic is a reality 30% of women with breast cancer will have to face.
It’s clear: to solve the problem of metastatic breast cancer, we need the entire community involved and engaged in the issues.
It feels like the time is right to shake things up in the breast cancer movement again, doesn’t it?