National Breast Cancer Coalition

On September 20, 2010, the National Breast Cancer Coalition (NBCC), a grassroots advocacy organization that seeks to improve public policies surrounding breast cancer research, diagnosis and treatment, launched Breast Cancer Deadline 2020, a call to action for policymakers, researchers, breast cancer advocates and other stakeholders to eradicate the disease by January 1, 2020.

Founded in 1991 by a group of breast cancer survivors including President Fran Visco. Coalition members include breast cancer support, information and service groups, as well as women’s health and provider organizations.

Philosophy/Breast Cancer Deadline 2020

The National Breast Cancer Coalition supposedly distinguishes itself through its commitment to evidence-based medicine. NBCC supports a medical consumerism model, in which women are educated about their options, their personal risk levels, and the evidence behind the screening programs, and then are empowered to make their own decisions in consultation with their own primary medical providers. Rather than focusing on diagnosis and treatment, NBCC advocates for more research into the environmental causes of breast cancer and cancer prevention.^[1]

Breast cancer awareness has long been the main outreach tool to find a cure. What that cure has amounted to countless times is funding the study of medications that potentially prolong life by a few years. While the public currently sees these instances as medical breakthroughs, NBCC remains focused on the long-term picture. Ending breast cancer is the primary objective of NBCC and the Breast Cancer Deadline 2020 campaign.

Setting a deadline is only the beginning of the end for the breast cancer epidemic. NBCC advocates believe breast cancer will be eradicated by focusing and aggregating efforts on two key areas including: learning how to stop breast cancer metastasis from taking lives and learning how to prevent the disease from developing. At its core, Breast Cancer Deadline 2020 is centered on strategic summits, catalytic workshops and collaborative efforts with a multi-disciplinary and diverse group of stakeholders. NBCC will host two strategic summits in 2011, one each on the topics of metastasis and prevention. At the summits, participants will develop a strategic plan for the associated topic, identifying major issues that are ripe for further work and that would have a significant impact on breast cancer in a five-year time frame. Catalytic workshops will then be held around these issues in 2012 and beyond. Starting in 2013, NBCC will convene biennial leadership summits with a multi-disciplinary and visionary group to examine progress and provide guidance and direction for the ongoing work to achieve the main goal of Breast Cancer Deadline 2020.^{[citation needed]}

Lobbying and Policy

The National Breast Cancer Coalition (NBCC) focuses its public policy advocacy on legislative priorities that include increasing funding for breast cancer research; providing access to high quality health care and clinical trials; and expanding the influence of breast cancer advocates in all aspects of the breast cancer decision-making process.

Policy

The National Breast Cancer Coalition (NBCC) is a nonpartisan organization whose mission is to eradicate breast cancer. NBCC educates, trains, and directs patient advocates and others in effective advocacy strategies. These efforts focus on legislative priorities set annually and have included: increasing funding for breast cancer research; providing access to high quality health care and clinical trials; and expanding the influence of breast cancer advocates in all aspects of the breast cancer decision-making process. The following examples are just a few highlights of the National Breast Cancer Coalition’s legislative accomplishments:

Research

• Department of Defense (DOD) Breast Cancer Research Program Established

In 1992, NBCC brought about the development of an unprecedented multi-million dollar breast cancer research project within the Department of Defense that has attracted more than 42,118 research proposals.^[2] Federal funding for this program, since its inception in 1991, has reached over $2.5 billion.^[3] NBCC worked vigorously to ensure consumer advocate participation in peer review of DOD Breast Cancer Research Program proposals.

• Breast Cancer Research Funding Increased by 50 Percent at the National Cancer Institute

NBCC's "Do the Write Thing" letter campaign set out in October 1991 to deliver 175,000 letters to Congress and the President—one letter for each projected breast cancer diagnosis that year. In an extraordinary demonstration of NBCC's grassroots power, we delivered more than 600,000 letters. This outpouring of letters, plus hard work by NBCC members, resulted in an appropriation of $132 million for breast cancer research to the National Cancer Institute (NCI) in fiscal year 1992—a 50 percent gain over 1991 spending.

Access

• Enactment of the Patient Protection and Affordable Care Act (PPACA)

For or more than a decade, the National Breast Cancer Coalition has made access to quality health care for all a top legislative priority.^[4] In 2007, the NBCC grassroots Board of Directors approved a Framework for a Health Care System Guaranteeing Access to Quality Health Care for All^[5] which builds on the principles it adopted in 2003. Throughout the process of developing the Framework, NBCC applied its longstanding commitment to advancing evidence-based medicine and training consumers to strive toward systems change. The Patient Protection and Affordable Care Act (PPACA), which became law in March 2010, marked an unprecedented step forward toward NBCC's goal of ensuring access to high quality health care for all. The law reflects many of the principles and priorities which NBCC adopted in the Framework and includes important language, which NBCC's advocates worked hard to have included, requiring educated consumers have representation on any committees, boards, panels or commissions formed under the law.

• Breast and Cervical Cancer Treatment Act Enacted

After four years of an intense and aggressive grassroots lobbying campaign by NBCC's nationwide network, on October 24, 2000, the Breast and Cervical Cancer Treatment Act (P.L. 106-354) was signed into law.^[6] This landmark legislation guarantees treatment to low-income, uninsured women screened and diagnosed with breast and cervical cancer through the Centers for Disease Control and Prevention's (CDC) National Breast and Cervical Cancer Early Detection Program.^[7] The Act provides federal funding to help cover more than half of the cost to States that opt to cover treatment for these women through Medicaid. Since this legislation was enacted, all 50 States and the District of Columbia have opted in to this program. This is a testament to the continued hard work of NBCC grassroots advocates at the State level.

• Access to Cancer Therapies Act Enacted

In December 2003, the Medicare Modernization Act was signed into law creating a prescription drug benefit for all Medicare beneficiaries effective in 2006. A provision providing transitional coverage for certain cancer drugs, from September 2004 until the full benefit was available in 2006, was also included in the law. The transitional benefit was based on the Access to Cancer Therapies Act, a longtime NBCC priority that would provide Medicare coverage for all oral cancer medications. Early warning signs from the regulators writing the rules for implementing the transitional program indicated that breast cancer drugs might not be covered. The inclusion of five breast cancer drugs during the transitional benefit was a struggle that was won with the hard work of NBCC's grassroots advocates. This program will cover 50,000 beneficiaries nationwide with total funding of $500 million.^{[citation needed]}

• Native American Breast and Cervical Cancer Treatment Technical Amendment Act Enacted

On January 15, 2002, S. 1741, the Native American Breast and Cervical Cancer Treatment Technical Amendment Act was enacted. This law helps ensure that American Indian and Native Alaskan women get coverage for breast and cervical cancer treatment.^[7] NBCC's advocates urged Congress to pass this legislation to help correct the unintended exclusion of these women from the Breast and Cervical Cancer Treatment Act.

• Medicare Coverage of Routine Care Costs During Clinical Trial Participation Implemented

In June 2000, President Clinton issued an Executive Memorandum to require Medicare to cover the cost of routine patient care associated with participation in clinical trials.^[8] This Executive Memorandum implemented the policy goals of one of NBCC's legislative priorities. Medicare coverage of routine care costs associated with clinical trials helps to encourage consumer participation in clinical trials, which are the best means of finding the cause, cure and prevention of breast cancer.

• Protection Against Genetic Discrimination for Federal Employees

On February 8, 2000, President Clinton signed an Executive Order banning genetic discrimination in the federal workplace.^[9] NBCC worked tirelessly towards enactment of comprehensible, enforceable genetic non-discrimination protections in health insurance and employment. NBCC successfully worked with the Administration to cover individuals in the federal workplace through the Executive Order.

Influence

• NBCC's Annual Congressional Record of Support Increased Congressional Accountability

Since 1998, NBCC has released a Congressional Record of Support.^[10] This guide tracks every current House and Senate member's support (co-sponsorship/vote) on NBCC's legislative priorities. It has increased accountability for their support, or lack of support, on the Coalition's legislation agenda. It points out the difference between symbolic support of eradicating breast cancer—such as wearing a ribbon but doing little else—and substantive support, such as helping to enact substantive breast cancer policy that NBCC supports.

Annual Lobby Day

NBCC also holds an annual Lobby Day each year where hundreds of women and men from across the country visit Capitol Hill en masse to speak with their representatives about breast cancer and NBCC’s legislative priorities, including federal funding for breast cancer research. During the 2006 annual Lobby Day, NBCC advocates held more than 400 meetings with members of Congress and their staffs.^{[citation needed]}

Research

NBCC works to increase the effectiveness of breast cancer research in several ways, including annual support for continued funding of the Department of Defense Breast Cancer Research Program, a program NBCC helped establish which involves breast cancer advocates in every stage of the decision-making process and promotes innovative, collaborative research; and collaboration with scientists and industry leaders as part of a clinical trials initiative. Advocates collaborate in the design, conduct and oversight of specific clinical trials in order to increase the quality, number, and participation. A collaboration with Genentech helped bring the targeted treatment Herceptin to market. NBCC also partners with the Love/Avon Army of Women to unite cancer researchers with women willing to participate in research studies on the causes and prevention of breast cancer.^{[citation needed]}

Providing the public with evidence-based and patient-centered information on important breast cancer issues and research has also been a key focus for NBCC since its founding. NBCC staff and advocates assess breast cancer research in the scientific and medical literature, and significant research findings reported in the popular media in order to provide a more in-depth patient-centered perspective on current research for the public. NBCC’s website, KnowBreastCancer.org, provides easy access for the public to get up-to-date information on breast cancer issues and news of the day, with a more in-depth, patient-centered perspective. Content includes a comprehensive look at major controversies in the field of breast cancer, including mammography screening, HER2 testing, and the diagnosis of ductal carcinoma in situ (DCIS). Summaries of current research are provided, along with comments and interpretations from breast cancer advocates.

Advocacy

NBCCF offers an array of education and training programs designed to give advocates the information, tools and skills they need to be effective breast cancer activists.

Annual advocacy training conference

Held in early May, the Annual Advocacy Training Conference brings together nearly eight hundred breast cancer advocates and survivors for three days, followed by our annual NBCC Lobby Day on Capitol Hill. It is NBCC’s national meeting of breast cancer advocates from around the world and is geared toward all experience levels of advocacy. There are plenary and workshop sessions on the latest scientific research, training in effective advocacy strategies, presentations by renowned researchers in the field, grassroots leaders from around the country and prominent public policy experts.^{[citation needed]}

Resources and Education

NBCC develops and makes available free resources for the public. These include its “Beyond the Headlines” program which provides evidence-based and patient-centered information in the form of analyses papers, fact sheets and position papers and its online Guide to Quality Breast Cancer Care. KnowBreastCancer.org is a unique^{[citation needed]} evidence-based website for the public and breast cancer advocates written by advocates that presents the latest research, controversies and gaps in knowledge around the important interventions in breast cancer.

Project LEAD®

Project LEAD (Leadership, Education and Advocacy Development), created in 1995, is NBCC’s flagship program for training breast cancer advocates in the science of breast cancer so they can better critically analyze breast cancer research and influence the research agenda and committees and breast cancer decision-making wherever those decisions are being made. Project LEAD trains advocates in the language and concepts of cancer biology, basic epidemiology and research methodology through a series of courses geared to different interest and skill levels.

Funding

NBCC is supported through grants, contributions from individuals, corporate sponsorships and special events. The organization encourages advocates and businesses across the country to organize fundraising events such as walk-a-thons, cocktail parties, fashion shows and other events in their community to benefit NBCC. Two large fundraising events are held each year to raise funds for NBCC: the Les Girls cabaret held every October in Los Angeles and the Annual New York Gala held in November in New York City.

The National Breast Cancer Coalition Fund meets all 20 Better Business Bureau Charity Standards, has received an "A" rating from the American Institute of Philanthropy and is rated as a four-star charity by Charity Navigator.

References

1. ^ Gayle A. Sulik (2010). Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. USA: Oxford University Press. pp. 52–53. ISBN 0-19-974045-3. OCLC 535493589. 
2. ^ http://www.stopbreastcancer.org/what-we-do/policy/legislative-policies-priorities/legislative-priorities-2010/legislative-priority-2-Background.html
3. ^ http://cdmrp.army.mil/pubs/factsheets/bcrpfactsheet.shtml
4. ^ http://www.stopbreastcancer.org/what-we-do/policy/legislative-policies-priorities/legislative-priorities-2010/legislative-priority-1-Background.html
5. ^ http://www.stopbreastcancer.org/what-we-do/policy/legislative-policies-priorities/nbcc-health-care-framework.html
6. ^ http://www.stopbreastcancer.org/what-we-do/policy/legislative-policies-priorities/individual-policy-priorities/history-background-of-bcctp.html
7. ^ ^{a b} http://www.cdc.gov/cancer/nbccedp/legislation/law106-354.htm
8. ^ http://clinton3.nara.gov/WH/New/html/20000607.html
9. ^ http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=2000_register&docid=fr10fe00-165.pdf
10. ^ http://www.stopbreastcancer.org/act/take-action/congressional-record/

External links

• National Breast Cancer Coalition official website
• National Breast Cancer Coalition: breast cancer news, research and advocacy