On January 15th, Metup co-founder Jennie Grimes submitted input and suggestions for National Breast Cancer Coalition’s (NBCC) Legislative and Public Policy Priorities for 2016.

NBCC’s call for priority submissions states that they “always ha[ve] chosen those priorities that will have a major impact on breast cancer. The issues must be overarching and cannot address a narrow issue.” We can think of no larger issue, or one more overarching then the approximately 40,000 women and men die of metastatic breast cancer every year in the US, a number that has not changed meaningfully in 40 years.

Much of the work done by breast cancer charities has focused on prevention for saving lives. Those living with MBC are excluded from this narrative– particularly if they were too young for routine screening, or had early stage disease that later metastasized. Decades of early prevention efforts have not reduced the annual death toll from breast cancer.

Metup requests that NBCC focus on better incorporation of those living with metastatic breast cancer. Breast Cancer Deadline 2020® is neglectful in its lack of effort to end breast cancer for those living with metastatic disease. The current Accelerating the End of Breast Cancer Act is only a call for the acceleration for prevention from breast cancer, and metastasis, but fails to include those currently living with metastatic disease, and leaves an entire community– those most impacted by and vulnerable to the disease– without inclusion or coverage by the expansion of resources through this Act.

With a new year we are less than four years away from 2020. Therefore any realistic, responsible goal to end breast cancer must also include ending metastatic disease for those living with it, not just preventing it.

We request that NBCC make strategic measures and resources available for those living with MBC, as an amendment to their Breast Cancer Deadline 2020, as well as in an expanded formulation of the Accelerating the End of Breast Cancer Act.

PRIORITY #1

Expansion of the Accelerating the End of Breast Cancer Act to Include those Living with Metastatic Disease.

In 2010, the National Breast Cancer Coalition (NBCC) set a deadline to know how to end breast cancer and launched a plan to achieve it, however this plan and the agenda of Breast Cancer Deadline 2020® is neglectful in its lack of preparation to end breast cancer for those living with metastatic disease. Unfortunately the current Act is only a call for the acceleration of prevention from breast cancer, and metastasis, but fails to include the expansion of resources to those currently living with metastatic disease, and leaves an entire community– those most impacted by and vulnerable to the disease– without inclusion or coverage by the expansion of resources that this Act calls for. We request that NBCC makes strategic measures and resources available for those living with MBC, as an amendment to their Breast Cancer Deadline 2020, as well as in an expanded formulation of the Accelerating the End of Breast Cancer Act. Some of the thousands of women and men currently living with metastatic breast cancer will live past our current 3 year prognosis into 2020 and will carry the disease into the next decade. The end of breast cancer by 2020 is not achievable without resources to stop the disease for those living with metastatic breast cancer.

PRIORITY #2

Continued funding for the $150 Million Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2016 with 30% Redistributed to Metastatic Research.

As a result of NBCC’s grassroots advocacy, the DOD BCRP was created in 1992 to “eradicate breast cancer by funding innovative, high-impact research through a partnership of scientists and consumers.” However these research dollars are not adequately distributed to focus on or even include the needs of the metastatic breast cancer community. With up to 30% of early stage breast cancer developing into metastatic disease and 6-10% diagnosed stage IV de novo, we request a fair distribution of these resources to address this disparity. Many of us in the metastatic community are living proof that prevention and early detection does not work for large segments of the population, thus we must address the metastatic condition by insisting that research to find solutions for the already metastasized patient receives its fair share – 30 percent for 30 percent. We ask that NBCC not only seeks to continue funding for this program, but to restrict that 30% of funds be designated to translational metastatic research.

PRIORITY #3

Guaranteed Access to Quality Care for All with Expansion to Include those Living with Metastatic Disease.

Ensuring access to quality, evidence-based health care. In addition, Metup asks for not only a commitment to protecting vital existing programs, such as the Medicaid Breast and Cervical Cancer Treatment Program (Medicaid BCCTP), but also advocacy for expansion of these programs to go beyond the current 18 month time-limit to provide ongoing coverage for those living with metastatic breast cancer whose care may far exceed these time parameters.

PRIORITY #4

Ensuring the Participation of Educated Patient Advocates in all Levels of Health Care Decision with a Coordinated Approach to Expand to those Living with MBC.

NBCC continues to work to ensure that educated patient advocates have a “seat at the table” in all levels of health care decision making which affects their lives, and are committed to increase training and recruitment for those living with MBC to make up a minimum of 30% of all advocates.

PRIORITY #5

NBCC will Expand its Commitment to those Living with Metastatic Disease by Having a Fixed Member on their Board of Directors from a Metastatic Breast Cancer Specific Organization (i.e.- MBCN, Metavivor, Metup).

As indicated in priority #4, it is important that patient advocates have a “seat at the table” and to set that example we find it of importance for NBCC to create this designated seat for those living with MBC, and to fully represent the needs of that community.

PRIORITY #6

NBCC will Focus Their Policy Agenda to Include the Needs of the Metastatic Community By Requesting that the SEER Database is Amended to Capture Recurrence.

We request that NBCC advocates for the NCI to amend the Federal Cancer data tracking system, SEER, to provide for adequate epidemiology and statistical counting for those living with MBC. Currently, SEER only captures data at the time of diagnosis, not rediagnosis to metastasis. This means that those rediagnosed with metastatic disease- between 90-94% of metastatic breast cancer patients- are never entered into Federal databases. Due to this inadequate data, it is impossible to fully capture those living with metastatic breast cancer or to receive adequate research funding and leads to an over-emphasis on detection. Through a coordinated effort we ask NBCC work with NCI and other policy makers to amend the manner in which SEER database captures recurrence to create a fully functioning data system that has the ability to capture those living with, and dying from, metastatic breast cancer.