S30 Abstracts / The Breast 22 S3 (2013) S19–S63

PO33

SUSAN G. KOMEN® INVESTMENT IN METASTATIC BREAST CANCER (MBC)

Karen S. Durham

Susan G. Komen, Dallas, Texas, USA

Issue: Metastasis remains one of the biggest challenges in breast cancer.

It is estimated that metastatic breast cancer (MBC) will kill close to

40,000 women in the US this year alone. Researchers, including those

funded by Komen, are working to understand the biology of MBC in an

effort to know why metastasis occurs and how to stop it, so that better

prevention and treatment strategies can be developed. In addition,

while Komen has multiple program offerings for women living with

breast cancer, we know there are unmet needs in the metastatic breast

cancer community. In order to identify what those needs are, Komen

convened a Metastatic Roundtable in 2012.

Methods: To identify unmet needs of MBC community, Komen utilized

an audit of the MBC advocacy landscape and a pre-meeting survey

to identify these unmet needs. The Komen Metastatic Roundtable

consisted of ten women from across the United States living with MBC

and four Komen staff members. The Roundtable was the first face-to-

face meeting of this group, with subsequent conference calls continuing

on a quarterly basis.

Results: The results of the audit and the survey identified that there are

four major areas of unmet needs of the MBC community.

• Psychosocial Support - Lack of understanding and awareness of

MBC by both breast cancer survivors and the general public.

• Research - Necessity for more research into the causes of and

treatment for MBC. Komen’s research strategy focuses on the most

aggressive cancers, including MBC. Komen has invested over $80

million in over 170 research grants focused on metastasis since

2006. 44% of this $80 million has been dedicated to the study of the

biology of MBC.

• Information - Relevant information regarding MBC was not

accessible or easy to find.

• Treatment Options - MBC patients often face significant barriers in

receiving quality care. Specifically, access to diagnosis, treatment,

and clinical trials were identified.

Conclusions: Largely in collaboration with other advocacy organizations

and academic and research institutions, Komen has made great effort to

address the unique needs of the metastatic breast cancer community by

funding research and providing programs and information for women

living with MBC.

PO34

FUNDING PRIORITIES FOR CANCER RESEARCH IN USA - AN ADVOCACY INITIATIVE TO GAUGE PERCEPTION OF METASTATIC BREAST CANCER RESEARCH AND FUNDING AMONGST CANCER RESEARCHERS IN THE USA

Arti Santhanam

METAvivor Research and Support, Inc., Annapolis, MD, USA

METAvivor Research and Support is a metastatic breast cancer (MBC)

patient-led nonprofit organization that exclusively funds MBC research

and advocates for increased advanced cancer research funding overall.

METAvivor has been struck by the differences in PERCEPTIONS AND

OPINIONS, even among scientists, on issues pertaining to priorities

in cancer research, definitions of metastatic research, and funding

limitations for advanced cancer research and MBC in particular. In order

to obtain a consensus on these issues METAvivor is surveying cancer

researchers in the USA to determine the state of research priorities and

funding for metastatic cancer, especially MBC.

Survey participants include early (graduate students, postdoctoral

fellows), mid-career (tenured/non-tenured faculty) and senior

(Institutional Directors etc) scientists. Early and mid-career scientists

represent the vulnerable group that is both affected and influenced by

funding issues, while senior scientists represent the group that may

have potential influence on research and funding policies. Our survey

has been distributed via various list-serves, organizations and social

media to reach scientists studying all types and stages of careers in

acadamia, industry and private institutions.

Respondents are polled not only on interests in cancer type, research

focus but also on perceived and aspired import of various research

areas (eg. prevention, treatment, public health etc.) and funding

priorities. In addition to gathering information on ratio of successful/

unsuccessful grant applications, we are also gathering information

on their perception of research and funding roadblocks. For example,

based on our preliminary results over 80%of those surveyed cited “lack

of specific funding” followed by “lack of appropriate model systems”

and “availability of matched patient tumor samples” as a major hurdle

to MBC research. Surprisingly, approximately 77% of the scientists

surveyed were unaware of the International Common Scientific

Outline (CSO) where metastasis is currently not a primary category of

classification. Most agreed that prioritizing metastasis as a CSO primary

category and broadening the definition of metastasis research to include

a) Study of metastatic tumors b) Drug discovery and targeted treatment

development, and c) development of specific model systems and

research tools was critical to achieve meaningful reduction in cancer

mortality. Some stressed a need for “global coordinated translational

effort” to address the metastasis research challenges. The survey is

currently open to all USA researchers and will run into early August.

METAvivor believes that equity in funding for advanced cancer research

will only be possible through a quantified understanding of scientific

and policy roadblocks. We will build on the results of this survey to

better inform patients, policy makers and researchers alike on MBC

research challenges and to create milestones towards achieving a longer,

improved quality of life for all stage 4 patients.

PO35

YSC RESEARCH THINK TANK: DETERMINING RESEARCH PRIORITIES FOR YOUNG WOMEN WITH METASTATIC BREAST CANCER

Jean Rowe, Michelle Esser, Stacy Lewis, Megan McCann, Nirmala Singh

Young Survival Coalition, New York, New York, USA

Background: Young Survival Coalition (YSC) is the premier global

organization dedicated to the critical issues unique to young women

and breast cancer. A strategic goal of YSC is to increase the amount of

quality research on young women, to define the most current research

needs for young women with breast cancer, and to advocate these needs

to doctors and researchers.

In 2001, YSC convened the “Medical Research Symposium on Young

Women and Breast Cancer,” consisting of seven researchers from the

New York City area. The resulting white paper set an initial YSC agenda

on both the current state and future direction for research in young

women. In 2012, YSC began work on the YSC Research Think Tank (RTT).

Our goal is to identify the most pressing research questions that would

improve the quality and quantity of life for young women diagnosed

with breast cancer. YSC assembled teams of doctors, researchers, and

advocates to focus on six areas of particular importance to its young

constituents including a workgroup on metastasis.

Methods: The metastasis workgroup included 4 advocates and 7

healthcare providers/researchers. Led by advocate chair, Debbie Molis,

from late summer 2012 to January 2013, the group examined current

research on young women with metastatic breast cancer (MBC) to

determine the next set of key questions to be answered. At an in-person,

two day meeting in Arlington, Virginia in February, 2013 the workgroup

gave a brief presentation and displayed what they believed to be the most

pressing research questions. By the end of the RTT meeting, after receiving

input and feedback from RTT attendees, the metastasis workgroup re-

assembled and determined their top three research priorities.

Results: The metastasis workgroup identified three research priorities:

(1) How can we better meet the psychosocial needs of young women

with MBC and their families; (2) how do we identify young women who

will and will not develop MBC (risk factors, patterns, lifestyle); and (3)