National Breast Cancer Coalition
Encyclopedia
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.
. 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.
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.
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:
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. Federal funding for this program, since its inception in 1991, has reached over $2.5 billion. NBCC worked vigorously to ensure consumer advocate participation in peer review of DOD Breast Cancer Research Program proposals.
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.
For or more than a decade, the National Breast Cancer Coalition has made access to quality health care for all a top legislative priority. In 2007, the NBCC grassroots Board of Directors approved a Framework for a Health Care System Guaranteeing Access to Quality Health Care for All 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.
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. 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. 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.
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.
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. 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.
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. 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.
On February 8, 2000, President Clinton signed an Executive Order banning genetic discrimination in the federal workplace. 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.
Since 1998, NBCC has released a Congressional Record of Support. 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.
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.
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.
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.
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.
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.
Grassroots
A grassroots movement is one driven by the politics of a community. The term implies that the creation of the movement and the group supporting it are natural and spontaneous, highlighting the differences between this and a movement that is orchestrated by traditional power structures...
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 medicineEvidence-based medicine
Evidence-based medicine or evidence-based practice aims to apply the best available evidence gained from the scientific method to clinical decision making. It seeks to assess the strength of evidence of the risks and benefits of treatments and diagnostic tests...
. 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.
Breast cancer awareness
Breast cancer awareness
Breast cancer awareness is an effort to raise awareness of breast cancer and reduce the disease's stigma by educating people about its symptoms and treatment options...
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.
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 nonpartisanNonpartisan
In political science, nonpartisan denotes an election, event, organization or person in which there is no formally declared association with a political party affiliation....
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 DefenseUnited States Department of DefenseThe United States Department of Defense is the U.S...
(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. Federal funding for this program, since its inception in 1991, has reached over $2.5 billion. 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. In 2007, the NBCC grassroots Board of Directors approved a Framework for a Health Care System Guaranteeing Access to Quality Health Care for All 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
Cervical cancer
Cervical cancer is malignant neoplasm of the cervix uteri or cervical area. One of the most common symptoms is abnormal vaginal bleeding, but in some cases there may be no obvious symptoms until the cancer is in its advanced stages...
Treatment Act (P.L. 106-354) was signed into law. 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. 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
Medicaid
Medicaid is the United States health program for certain people and families with low incomes and resources. It is a means-tested program that is jointly funded by the state and federal governments, and is managed by the states. People served by Medicaid are U.S. citizens or legal permanent...
. 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.
- 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. 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
Bill Clinton
William Jefferson "Bill" Clinton is an American politician who served as the 42nd President of the United States from 1993 to 2001. Inaugurated at age 46, he was the third-youngest president. He took office at the end of the Cold War, and was the first president of the baby boomer generation...
issued an Executive Memorandum to require Medicare to cover the cost of routine patient care associated with participation in clinical trials. 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. 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. 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.Research
NBCC works to increase the effectiveness of breast cancer research in several ways, including annual support for continued funding of the Department of DefenseUnited States Department of Defense
The United States Department of Defense is the U.S...
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
Genentech
Genentech Inc., or Genetic Engineering Technology, Inc., is a biotechnology corporation, founded in 1976 by venture capitalist Robert A. Swanson and biochemist Dr. Herbert Boyer. Trailing the founding of Cetus by five years, it was an important step in the evolution of the biotechnology industry...
helped bring the targeted treatment Herceptin to market. NBCC also partners with the Love
Susan Love
Dr. Susan Love is an American surgeon, a prominent advocate of preventative breast cancer research, and author.She is the president of the Dr. Susan Love Research Foundation, a non-profit organization that promotes and funds breast cancer intraductal research, and has a close involvement with the...
/Avon Army of Women to unite cancer researchers with women willing to participate in research studies on the causes and prevention of breast cancer.
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 plenaryPlenary session
Plenary session is a term often used in conferences to define the part of the conference when all members of all parties are to attend.These sessions may contain a broad range of content from keynotes to panel discussions and are not necessarily related to a specific style of delivery.The term has...
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.
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 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 flagshipFlagship
A flagship is a vessel used by the commanding officer of a group of naval ships, reflecting the custom of its commander, characteristically a flag officer, flying a distinguishing flag...
program for training breast cancer advocates in the science of breast cancer so they can better critically analyze breast cancer research
Cancer research
Cancer research is basic research into cancer in order to identify causes and develop strategies for prevention, diagnosis, treatments and cure....
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
Biology
Biology is a natural science concerned with the study of life and living organisms, including their structure, function, growth, origin, evolution, distribution, and taxonomy. Biology is a vast subject containing many subdivisions, topics, and disciplines...
, basic epidemiology
Epidemiology
Epidemiology is the study of health-event, health-characteristic, or health-determinant patterns in a population. It is the cornerstone method of public health research, and helps inform policy decisions and evidence-based medicine by identifying risk factors for disease and targets for preventive...
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 AngelesLos Ángeles
Los Ángeles is the capital of the province of Biobío, in the commune of the same name, in Region VIII , in the center-south of Chile. It is located between the Laja and Biobío rivers. The population is 123,445 inhabitants...
and the Annual New York Gala held in November in New York City
New York City
New York is the most populous city in the United States and the center of the New York Metropolitan Area, one of the most populous metropolitan areas in the world. New York exerts a significant impact upon global commerce, finance, media, art, fashion, research, technology, education, and...
.
The National Breast Cancer Coalition Fund meets all 20 Better Business Bureau
Better Business Bureau
The Better Business Bureau , founded in 1912, is a corporation consisting of several private business franchises of local BBB organizations based in the United States and Canada, which work through their parent corporation, the Council of Better Business Bureaus .The Better Business Bureau, through...
Charity Standards, has received an "A" rating from the American Institute of Philanthropy and is rated as a four-star charity by Charity Navigator.