What is MBCN?
Founded in 2004, the Metastatic Breast Cancer Network (MBCN) is a national, independent, patient-led, nonprofit advocacy group that provides education and information on treatments and coping with the disease. We fund metastatic specific research, and in 2012, became a founding member of the Metastatic Breast Cancer Alliance, an organization whose mission is to move research forward, improve patient access to information and build awareness of the disease for those living with metastatic breast cancer.
Who Founded MBCN?
Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network (MBCN) in 2004.
“As a woman living with metastatic disease, I had felt isolated and excluded from the very groups that were set up to help woman diagnosed with breast cancer,” Shulman explained in 2007. “The breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening.”
Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.
What Was it Like to Have MBC in 2004?
The breast cancer world at that time was not a welcoming place for those with metastatic breast cancer.
>There were few if any breast cancer groups that recognized metastatic breast cancer.
>There were no conferences specific to the metastatic breast cancer audience.
>There were few, if any, educational materials and pamphlets written for those with stage IV.
>Support groups specifically for those with metastatic breast cancer were almost impossible to find.
>There were no groups raising funds to support metastatic specific research.
Why Was October 13th Chosen to be National Metastatic Breast Cancer Awareness Day?
MBCN was holding a national conference for people with metastatic breast cancer at Memorial Sloan Kettering Cancer Center—October 13th was the only date the venue was available. The date was chosen to coincide with the conference.
How Did National Metastatic Breast Cancer Awareness Day Come About?
In 2007, several group members were at MBCN co-founder Nina Schulman’s dining room table brainstorming awareness ideas. What could we do to help bring this disease out of the shadows?
One member, Amy, suggested a proclamation declaring a special day in October for metastatic breast cancer. She contacted Mayor Bloomberg’s office in NYC and MBCN got the proclamation.
A copy of the proclamation was then sent to all 250 members of MBCN.
Meg Fels in Princeton, NJ got a proclamation, as did Living Beyond Breast Cancer (LBBC) in Philadelphia, along with Ruth Gesmer Silverman in Buffalo Grove, Illinois.
In early 2008, a member in Maine wrote to MBCN announcing she got a proclamation from the governor of her state. MBCN email blasted our then 900 members requesting they contact their mayors and governors to get proclamations for Metastatic Awareness Day. Within 48 hours, we had over 150 responses!
Momentum built as members forwarded the email to friends across the country and around the world.
Early in the summer of 2009, MBCN’s Shirley Mertz decided that the only way to have MBC Awareness Day acknowledged everywhere in the United States was to seek passage of a Congressional Resolution that would reach all 50 States in the Union. As a high school student, Shirley personally met the mother of Indiana Senator, Evan Bayh, Marvella Bayh. Shirley knew that Marvella lost her life to metastatic breast cancer. She decided to go to Washington D. C. and ask Senator Bayh to sponsor a Senate Resolution declaring October 13 as National Metastatic Breast Cancer Awareness Day. He agreed to sponsor a Senate resolution and Representative Rosa DeLauro of Connecticut agreed to co-sponsor the resolution in the House of Representatives. Click to see the resolutions to declare October 13 as National Metastatic Breast Cancer Awareness Day
In the above video, Representative Rosa DeLauro speaks to the House about supporting the resolution in 2009. She was the sponsor on the House side, and, as of October 2018, is still in Congress.
In 2009, Shirley and Susan Davis co-chaired the advocacy team that traveled to Washington, DC. The group spoke with members of the U.S. Senate and House of Representatives to educate them and bring awareness of our unique issues living with metastatic disease.
The group had four priorities:
- Eliminating the 24-month waiting period for those on social security before Medicare kicks in. (Nine years later, this effort continues.)
- Eliminate lifetime limits on health insurance coverage.
- Addressing the disparity between the reimbursement for IV chemo drugs and chemo pills that are often billed as prescriptions – with a huge co-pay.
- National recognition for those living with metastatic breast cancer.
While National Metastatic Breast Cancer Awareness Day impacted metastatic breast cancer advocacy in all fifty states, the resolution’s date, October 13, and its significance, spread to Canada, Europe, and countries in Asia and Africa. Patients and advocates are recognizing their metastatic population on October 13.
Where Do We Go From Here?
Awareness is growing, albeit gradually. Our faces are being seen. Our voices are being heard.
But remember, until 2009, metastatic breast cancer was rarely mentioned during October, Breast Cancer Awareness Month.
We will never forget the determined metastatic breast cancer patients and their families and friends who traveled to Washington, D.C. in the summer of 2009 to change that reality. We continue to take inspiration from those 9 patients who lobbied Senators and House members to designate October–October 13– as National Metastatic Breast Cancer Awareness Day. We are grateful for their efforts as well as the many metastatic patients across the country who called their Senators and Representatives to get them to support the requested resolutions.
Kathy Coursey-Boes with her 12-year-old daughter Addie were part of the 2009 delegation. Mother and daughter drove from their home in Oxford, GA to Washington DC to join the delegation. “The drive was long and the day was hot, but it was important for me to be in Washington and have my voice heard. It was important for Addie to see me fighting on behalf of my beliefs and the needs of others,” Kathy recalled. “I was part of the group representing all of us with stage IV breast cancer and the issues that are unique to us.”
Pete Devereaux was also there in 2009. He was a Marine, a champion athlete and a patient advocate who brought greater awareness not only to male breast cancer in general but to his 82 fellow Marines who were stationed at Camp Lejeune and later diagnosed with male breast cancer due to a contaminated water supply. ( This is the largest reported cluster of male breast cancer.)
Judith Christensen and her husband William were there, too. “It is so important that this group of people dealing with metastatic disease not be isolated or ignored,” William wrote in a 2012 letter to the editor of a Plymouth, MA, newspaper. “Additional research funding and funding for treatment should be focused on the needs of this group. A lot has been done to raise awareness of breast cancer in the broadest sense. More needs to be done to deal with the deadly and fatal side of the disease. I would urge you to focus some of your efforts on raising awareness about metastatic breast cancer during the month of October. It is a job that needs doing.”
Judith died on October 27, 2019 at age 75.
Now it is up to every metastatic breast cancer patient and those who love and support them to find ways to make use of this day (and throughout the year) to further our cause to support those living with the disease and demand research to find treatments to extend our lives. You can make a difference! Use your story to reach out to others.
Not sure where to start? See our advocacy kit for suggestions.
Remember: What is acknowledged can be changed. What is kept hidden and not discussed will not be changed.
We are standing on the shoulders of the MBC advocates who preceded us. We hope you will join us in honoring and expanding upon their efforts.