Advocacy in Action: Metastatic Breast Cancer Network

Shirley Mertz, board member of the Metastatic Breast Cancer Network and metastatic breast cancer survivor, introduces us to the work of MBCN.org informing, educating and supporting both men and women living with metastatic breast cancer.

Advocacy in Action videos 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

I’m very pleased to be joined by Shirley Mertz. Shirley is a board member of the Metastatic Breast Cancer Network, which is MBCN.org, and I would love for you to tell us something about the organization and your work with them, and why you do what you do.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network

The Metastatic Breast Cancer Network was founded about 2004 by two women who had metastatic disease. They lived in New York and they attempted to join a breast cancer group for support, and when the other women found out that they had metastatic disease they kind of shrunk back and the two women realized very clearly that they were not very welcome, and they sensed it was a matter that they had the disease for which there was no cure and it just didn’t sit well with the other ladies who were hopeful that they would never recur and that some, though they were in treatment, knew they would be finished, and others were finished. So it just didn’t fit.

So the two ladies discussed what they could do, they felt they were outraged, there were needs of metastatic people that weren’t being met, so they worked with a social worker out of Memorial Sloan Kettering, and they founded a group and it ultimately became known the Metastatic Breast Cancer Network, and one of the doctors, Dr. Larry Norton, supported their cause and in fact he offered to do a little program in 2005 about metastatic disease.

We’re here to inform, provide information, to educate patients and their loved ones, and then to provide support. I became active in the sense that I believe strongly in advocacy, and I love research about metastatic disease to empower myself and others. So we provide a year, every year a metastatic conference that occurs in October; our last one was just October 29th at Johns Hopkins and every speaker presentation is on our website, click on bone mets or soft-tissue surgery, whatever and you can listen if you didn’t attend. We put patient stories on; myself and another board member research the internet and scientific journals for articles that patients can use and then we upload those.

The Metastatic Breast Cancer Network realized early on from patients that the one thing they were really lacking was information at the time of their diagnosis. The shock first of the knowledge of the disease but then you want to read about it, and unfortunately most physicians don’t have anything to offer. So we took the time, with the help of medical professionals, to create a kit that provides information to newly diagnosed patients about the disease, how to access good care, how to access other services, and just to know that there is help out there and that they can live a long quality of life. We make these kits available for free, people can go online at MBCN.org, request a number of them, we will send them out to them for free, they also can download the kit off the website, and to date we have sent out 8,000 kits to patients, caregivers, oncology nurses and physicians. And we hope with each year to update the kit and we’ve really had a lot of feedback that this has been helpful.

One of the things that I thought was very important is that we really needed a day in October to be devoted to metastatic disease because the whole October pink month is about early stage, so we had been trying through local mayors, like the mayor of New York, mayor of Chicago, they were willing to designate a day and the first one was October 13 – it just happened to be the day of the week that they wanted to use – and then I got the idea that my goodness, by the time we wait for everybody to be healthy enough to contact their mayor or local or their governor, it could be years. So I remember meeting Marvella Bayh when I was selected for an award in high school. She was the wife of Birch Bayh, the senator in Indiana; she ultimately died of metastatic breast cancer, and she was very active in her day. And her son was a senator at the time in 2008 from Indiana, Evan Bayh, so I wrote him a letter, went to the office and said ‘would you sponsor legislation to declare a national resolution that October 13th be metastatic breast cancer day?’ So he said he would do it. I worked with another woman to organize a group of metastatic patients, we went to Washington DC, representative Rosa Delora from, I believe, Connecticut, sponsored the House resolution, we visited 12 offices, imagine there were 9 metastatic patients – most of them overall in treatment but some debilitated, some not so debilitated – our family members and we went through 12 congressional offices to get support; we also fought for an end to Life without Limits et cetera, and then we went home and we used our network to have women across the country call their local representative, their senator and say ‘support this’, and we got it. And ever since then we have been using that day to get our word out in a variety of ways that metastatic disease is not an immediate death sentence, it’s not curable but with more research we can live longer and live a good quality of life.

Really as long as I’m standing I’m going to work to help metastatic patients – both men and women.

Selma Schimmel:

Thank you.

Shirley Mertz:

You’re welcome.

Selma Schimmel:

Shirley Mertz, Metastatic Breast Cancer Network board member, living with metastatic breast cancer yourself, living well and wisely. MBCN.org

Shirley Mertz:

Thank you, Selma.

Selma Schimmel:

It’s a pleasure.

END OF VIDEO

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