National Breast Cancer Coalition

NBCC is a collaboration of activists, breast cancer survivors, researchers, policymakers, grassroots groups, and national organizations.

The group links organizations and individuals from across the country into a coalition with a goal to give breast cancer a voice in Washington, D.C., and state capitals; in laboratories and health care institutions; and in local communities nationwide.

NBCC is guided by three primary goals:

Research: NBCC analyzes research, and preventive and treatment interventions for breast cancer. The organization also advocates for increased federal funding for breast cancer research.

Access: According to its public policy priorities, NBCC works to improve access to quality breast cancer care for all individuals, including appropriate screening policies through diagnosis, treatment and care through legislation and change in systems of delivery of health care.

Influence: NBCC's educational programs trains individuals as advocates to increase the involvement and influence of those living with breast cancer and other breast cancer activists wherever breast cancer decisions are made.

NBCC's 501(c)4 arm lobbies for breast cancer legislation and public policy initiatives. Over the years, NBCC has worked with Congress and the White House to enact legislation and fund programs.

Department of Defense Breast Cancer Research Program (DOD BCRP)

Since 1992, NBCC has advocated for additional funding for the DOD BCRP. This has resulted in more than $3.9 billion[1] in new federal funding for breast cancer research, created new models of research and ensured consumer advocate participation in programmatic and peer review.

2.6 Million Signatures Campaign

NBCC grassroots advocates collected more than 2.6 million signatures[2] on a petition asking for a national plan to end breast cancer. Advocates delivered the signatures to President Bill Clinton at the White House in October 1993, and President Clinton launched the National Action Plan on Breast Cancer,[3] which was a collaboration of government, science, private industry, and consumers.

Breast and Cervical Cancer Treatment Act

NBCC lobbied[4] Congress and the Clinton administration in 1998 to pass and sign into law the Breast and Cervical Cancer Treatment Act,[5] which ensures low-income and uninsured women had access to screening and treatment. The bill was signed into law in October 2000. Prior to its passing, low-income and uninsured women had access to screening, but not treatment.

Breast Cancer Environmental Research Act First Introduced in the House

First introduced in the House in 1999, the Breast Cancer Environmental Research Act called for the creation of a national research strategy and a program to competitively fund collaborations of researchers and community groups to conduct research on environmental factors that may be related to the etiology of breast cancer. In 2008, the bill passed. Despite initially supporting the bill, NBCC withdrew its support when the version of the bill that was enacted into law did not include elements NBCC lobbied for.

Accelerating the End of Breast Cancer Act

In 2011, NBCC initiated the Accelerating the End of Breast Cancer Act, which laid out a strategy for government involvement towards NBCC’s Breast Cancer Deadline 2020[6] campaign, introduced in 2010, that set a goal to end breast cancer by January 1, 2020. This bill would have created a national commission to capitalize on federal and private investments already made in science and technology development and develop a plan to accelerate innovation in breast cancer. The bipartisan bill gained 274 U.S. House and 54 U.S. Senate cosponsors in 2015 but fell short when House leadership decided not to bring it to the floor for a vote.

The Breast Cancer Deadline 2020® drew skepticism from the research community. A 2010 Science article[7] noted that the publication "was curious to know how NBCC proposes to end breast cancer when, as its Web site notes, nobody knows how to prevent the disease." An independent third-party assessment published an assessment on NBCC's Breast Cancer Deadline 2020® initiative, which labeled the campaign as an "ambitious goal."

Introduction of the Metastatic Breast Cancer Access to Care Act in Congress

The Metastatic Breast Cancer Access to Care Act is a bill initiated by NBCC that would waive the 24-month waiting period for Medicare and the 5-month waiting period for Social Security Disability Insurance benefits for eligible individuals living with metastatic breast cancer. First introduced in 2018, this bill had yet to be brought to the House floor for a vote.

NBCC collaborates with the scientific community to develop new research models, design protocols, set research priorities, and conduct research aimed at ending breast cancer.

Project LEAD

Established in 1995, Project LEAD trains advocates in science and research through a week-long training program and an online and in-person continuing education program. Trained advocates serve on research panels, local or regional research committees, and inform research through participation in the design of clinical trials and other efforts. Project LEAD graduates have steered major clinical trial efforts through their participation, such as the TAILORx[8] trials conducted to evaluate the effectiveness of chemotherapy when used with other treatments and clinical trials for treatments of hereditary breast cancer.

Artemis Project

NBCC launched its advocate-led Artemis Project in 2011. The project focuses on primary prevention of breast cancer and prevention of metastasis. A preventive vaccine development plan presented to the Food and Drug Administration in 2018, with plans for a Phase I safety trial in 2021.

Pre-clinical work for the Artemis Project's preventive vaccine began in 2016.

NBCC's Launching of DNA.Land to Develop Large-Scale Genetic Database for Breast Cancer Research

NBCC partnered with the New York Genome Center to[9] develop a large-scale resource to study breast cancer. The DNA.Land project asked women and men who participated in genealogy tests to answer questions about breast cancer, including their family history. According to the groups, these genomic data will be used to develop a database that researchers can use to identify genetic variants that impact breast cancer risk and recurrence.

NBCC Involvement with NATALEE Trial

In 2019, NBCC began its collaboration with Translational Research In Oncology and Novartis on a clinical trial of CDK4/6 inhibitors in early high-risk HR+/HER2- breast cancer, the NATALEE trial.[10] The organization has trained advocates who serve on the clinical trial steering committee, the data safety monitoring board, and the translational research committee.

NBCC is supported through grants, contributions from individuals, corporate sponsorships and special events.

1. "Breast Cancer Research Program, Congressionally Directed Medical Research Programs". cdmrp.army.mil.

2. "Clinton Vows More Help in Breast Cancer Battle: Health care: President also seeks policies that afford wider access to mammography. Women will gain 'equal footing' under reforms, he says". Los Angeles Times. 1993-10-19.

3. "Presidential Health Care Proposal | C-SPAN.org". www.c-span.org.

4. Foundation, Clinton (2020-10-29). "Reflecting on the Breast and Cervical Cancer Prevention and Treatment Act". Medium.

5. Lee, Nancy C.; Wong, Faye L.; Jamison, Patricia M.; Jones, Sandra F.; Galaska, Louise; Brady, Kevin T.; Wethers, Barbara; Stokes-Townsend, George-Ann (2014-08-15). "Implementation of the National Breast and Cervical Cancer Early Detection Program". Cancer. 120 (0 16): 2540–2548. doi:10.1002/cncr.28820. ISSN0008-543X. PMC4481738. PMID25099896.

6. "National Breast Cancer Coalition Deadline 2020 White Paper". Cancer History Project.

7. "Sounds Familiar—End Breast Cancer by 2020?". www.science.org.

8. "TAILORx finds no chemotherapy benefit for most early breast cancers - National Cancer Institute". www.cancer.gov. 2018-06-03.

9. "National Breast Cancer Coalition Partners with New York Genome Center's DNA.Land To Crowdsource Large-Scale Breast Cancer Genomics Database". New York Genome Center. 2017-03-15.

10. Novartis Pharmaceuticals (2021-10-20). "A Phase III Multi-center, Randomized, Open-label Trial to Evaluate Efficacy and Safety of Ribociclib With Endocrine Therapy as an Adjuvant Treatment in Patients With Hormone Receptor-positive, HER2-negative Early Breast Cancer (New Adjuvant TriAl With Ribociclib [LEE011]: NATALEE)". Translational Research in Oncology.

• National Breast Cancer Coalition official website