How Can Broad-based Cancer Organizations Best Help the Metastatic Breast Cancer Patient?
Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.
Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org.
Advocacy in Action at the 34th Annual CTRC-AACR San Antonio Breast Cancer Symposium was made possible by support from:
VIDEO TRANSCRIPT:
Selma Schimmel, Founder & CEO, Vital Options International:
There’s many of us that will live with cancer and have to coexist with this disease, and the idea that we can give a voice and now faces to the issues behind living with metastatic breast cancer is the goal of Advocacy In Action.
Elyse Spatz Caplan is the Director of Programs and Partnerships at Living Beyond Breast Cancer. And I want to thank you again for really being a great partner to this project.
Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:
Thanks so much, Selma. It’s really a pleasure to be here. This issue, metastatic breast cancer, is critically important. It’s what we hear at Living Beyond Breast Cancer day in and day out and so, I think it’s really timely and relevant and I’m delighted to be part of the program.
Selma Schimmel, Founder & CEO, Vital Options International:
Elyse, how does an organization focus on advocating, the role of organizations on behalf of everything we have talked about research, and giving the attention to metastatic disease?
Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:
So, I think one of the roles that non-profit organizations, many of whom are represented here at San Antonio, can take and one of the positions that Living Beyond Breast Cancer takes is, the more we learn about the biology of breast cancer and the more we understand that breast cancer is not just one disease but it is many diseases, our educational resources need to be tailored in a similar fashion. We need to parallel. As we learn more about the subtypes and other aspects of cancer, whether it is stage of diagnosis, age of diagnosis, subtype of breast cancer, it is so critically important that we have credible information available. So, one of the things that our organization does is to make sure that we are filling in gaps in information that women or men with breast cancer might be seeking.
So, many years ago we were committed to ensuring that women with stage-4 breast cancer, or metastatic breast cancer, had relevant information that was credible, that they could go to. As all of us that are here know, as health care in the United States has changed over the years we have less and less time with our oncologists- so we need to come in with lists of questions prepared to get the information we need to make informed health care decisions.
So, one of the things that Living Beyond Breast Cancer did is, to do a needs assessment, which I mentioned earlier, that we worked together with Musa on the development of an extensive survey tool. Because, even though we have thousands of anecdotes from the numerous programs we’ve done over 20 years, we wanted to take a responsible approach and ask women living with metastatic breast cancer, ‘what do you want and what do you need in terms of information?’ And so, we learned an awful lot- we had nearly 700 respondents, and as such, one of the top line things we learned is we need to deliver the information in multiple formats. Everybody learns in a different way, everybody has a different preference for information. So, we have a conference just for women living with metastatic breast cancer. So there is a weekend that they can come together, get access to the medical experts, and as important as that is, they get access to one another. They’re peer supporters and build that support community for themselves. We have publications because we know people like things in writing, so we’ve got guides and booklets. Our website has a sub-site for metastatic. We have telephone conferences so people can dial in. We’ve got helpline volunteers who are metastatic. So, mentioning that just as a way of saying, ‘we need to make sure we’ve got the tailored resources serving the metastatic community, but we can’t just deliver it in one way. We’ve got to meet people where they are, when they need it, in a certain kind of a way.’ So, that’s just one role as an organization we can take to ensure that our resources appeal to different ages and stages of diagnosis.
END OF VIDEO