Once again, Komen Philadelphia is taking groundbreaking steps by unifying and empowering 15+ local hospitals in order to put the metastatic breast cancer community on equal footing in the breast cancer movement.
(January 17, 2017) Today, Susan G. Komen® Philadelphia called together the inaugural meeting of its newly formed Coalition of Hospitals for Metastatic Disease—putting the wheels in motion for nearly 40 hospitals and organizations from Philadelphia and surrounding areas to significantly pursue more substantial initiatives for serving the metastatic breast cancer community.
In September of 2016, Komen Philadelphia built bridges to the metastatic breast cancer (MBC) community by forming the organization’s first MBC advisory panel and presenting the area’s first symposium developed exclusively to support the unique needs of women and men living with MBC. Driven by the positive response of these two initiatives, Komen Philadelphia has taken the critical next step by forming a network—comprised of Philadelphia area hospitals and organizations, such as the Philadelphia Department of Public Health—that possess the understanding, resources and capabilities to more fully serve the needs of the MBC community.
The January 17 Coalition meeting brought together approximately 50 local MBC researchers, doctors, nurse navigators, and other professionals who provide medical as well as emotional and lifestyle support services to people living with MBC. More than 15 hospitals/organizations from the Philadelphia area are represented in the Coalition. In addition to presenting the current state of MBC service, research and advocacy, the inaugural meeting included MBC patients sharing what they need from the breast cancer community. The meeting also formed a foundation on which Coalition members can start their own MBC initiatives, focusing heavily on Coalition members learning from and supporting each other—with Komen Philadelphia taking the lead in resource sharing.
“President Biden is constantly emphasizing that the key to Cancer MoonShot 2020 and to beating cancer in this day and age is our world getting over a type of hoarding of intelligence,” said Elaine I. Grobman, CEO, Komen Philadelphia. “Cancer Moonshot is all about getting rid of the walls doctors and researchers work behind and creating a universal pool of information that can empower everyone. I see our Coalition of Hospitals in a similar light. We are here to build on each other’s strengths… unite our resources… and learn from each other so we can make the greatest impact possible for the metastatic breast cancer community.”
The first Coalition meeting offered several informative presentations and interactive opportunities including:
- Emotional sharing of her story and “visions” by metastatic breast cancer patient, Felicia Johnson
- Passionate remarks and a “call for action” by Elaine I. Grobman
- The state of MBC Activism & Advocacy: presentation by Meryl Weinreb, Chair of Education and Public Policy, Komen Philadelphia
- Spirited round-table discussion open to all attendees
Giving a Voice to the Metastatic Breast Cancer Community
Currently, it is estimated that 150,000-250,000 people in the U.S. are living with metastatic breast cancer. Only 15% of these metastatic breast cancer patients are expected to live more than 5 years, the median survival rate is 3 years after the diagnosis, and the majority of the 40,000 breast cancer deaths that will occur in the U.S. this year will be due to metastatic breast cancer. Moreover, approximately 30% of women who have survived early-stage breast will progress to metastatic disease.
“These statistics are shocking and something every person should be aware of. Yet the lack of recognition, let alone understanding, of metastatic breast cancer by people who are otherwise supportive of the breast cancer movement is disheartening,” said Grobman. “I’ve heard things I can describe as nothing but appalling about metastatic patients being avoided by friends… about husbands leaving their wives because it’s too hard to deal with… about the hurt and isolation patients experience. At a time in their lives when metastatic breast cancer patients need every ounce of support and love they can get, people are running away from them simply because they don’t understand the disease, or don’t know how to talk to someone with the disease. Komen Philadelphia is taking charge, we’re putting the brakes on what is happening and we are giving a voice to the MBD community.”
Grobman went on to say that many patients on the organization’s MBC advisory panel have expressed that getting coverage for care can be extremely frustrating because insurance companies question the type of treatment, medicine and other services they need to live as normal a life as possible. Patients also find it discouraging that many providers try to make them “fit” into programs structured for breast cancer survivors.
“When I hear ‘survivor,’ I think of someone who has come through a situation and that situation is over with. With metastatic disease, we lack the closure that others have once a disease is treated,” said one MBS survey participant.
This fall, Komen set began pursuit of a new Bold Goal to reduce the current number of breast cancer deaths in the U.S. by 50% within a decade. One of the ways they doing this is through an enhanced research focus on the most lethal forms of breast cancer, with metastatic breast cancer at the top of the list. Since its founding, Komen has invested more than $166 million in metastatic breast cancer research, which includes funding of more than 400 metastatic research grants and more than 40 clinical trials.
With Komen-funded research having broken ground in metastatic disease, the organization is out to ramp up the funding to drastically accelerate the progress. At the same time, local Komen affiliates like Komen Philadelphia are taking a stand to fight with the Forever Fighters who have been fighting in the shadows.
“Think about what has happened in the breast cancer movement as we know it over the past 20 years,” said Grobman. “Entire industries, the health care community, the public and private sectors have all rallied to make sure more women survive breast cancer. Don’t get me wrong, what has happened is amazing, it is wonderful. Every Mother’s Day at our Race for the Cure, I look out at 100,000 people gathered to celebrate survivors and a get tears in my eyes.”
“But where are the metastatic breast cancer patients in this picture?” Grobman continued “They aren’t there. Communities are not rallying for them. But it’s time that they did. And just like Komen Philadelphia started the original movement, we’re starting a movement for the metastatic breast cancer community. We, along with our Coalition of Hospitals are going to change the game for men and women living with metastatic breast cancer.”