Cancer Causes Control (2015) 26:653–656 DOI 10.1007/s10552-015-0565-9

ORIGINAL PAPER

The National Breast and Cervical Cancer Early Detection Program: 25 Years of public health service to low-income women Paula M. Lantz1 • Jewel Mullen2

Received: 4 November 2014 / Accepted: 17 March 2015 / Published online: 3 April 2015 Ó Springer International Publishing Switzerland 2015

Abstract This article presents an overview of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), a valuable and successful national public health program in the USA that will soon celebrate its 25th anniversary. Simulation modeling and other analyses have demonstrated that the NBCCEDP has significantly reduced breast and cervical cancer mortality among low-income uninsured and underinsured women in the USA, a major goal of the original legislation. The NBCCEDP has also served to build cancer prevention and control capacity in state and local health agencies and created strong and unique public–private partnerships aimed at improving women’s health. As such, the impact of NBCCEDP extends beyond the millions of women served by the program to include increased public health system capacity and effectiveness regarding cancer early detection and control for all women. Keywords Breast cancer  Cervical cancer  Screening  Early detection  Public health  Health policy The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) is a valuable and successful national public health initiative in the USA that will soon celebrate its 25th anniversary [1]. While unique in many ways, the NBCCEDP complements a number of other federal

& Paula M. Lantz [email protected] 1

Department of Health Policy and Management, Milken Institute School of Public Health, 950 New Hampshire, Suite 600, Washington, DC 20052, USA

2

Connecticut Department of Public Health, Hartford, CT 06134-0308, USA

programs that provide preventive services aimed at improving the health of the millions of medically underserved women who live in or near poverty, including the Title X Family Planning Program and the Special Supplemental Food Program for Women, Infants and Children.

NBCCEDP design and history The NBCCEDP was created through the Breast and Cervical Cancer Mortality Prevention Act, passed by Congress in 1990 (Public Law 101–354) [1, 2]. The goals of this law were to reduce the high rates of morbidity and mortality and the racial/ethnic disparities experienced in two prevalent types of cancer in women [3, 4]. By providing breast and cervical cancer screening and diagnostic services to low-income uninsured and underinsured women aged 21–64, the federal government offers significant resources to increase the early detection and treatment of cancer and precancerous lesions at the state, territory, and local level [4]. Evidence-based early detection, in turn, is predicted to reduce the personal suffering and public health burden associated with breast and cervical cancer. Administered out of the Centers for Disease Control and Prevention (CDC) and Division of Cancer Prevention and Control, the NBCCEDP works through cooperative agreements with qualifying public health agencies, including state and territorial health departments, and American Indian and Alaskan Native tribes and tribal consortia [1]. States have some flexibility in terms of eligibility standards regarding age and income, with the NBCCEDP setting maximum or ceiling standards. Participating public health agencies are required to contribute $1 to their program for every $3 of federal funding received [1, 5]. Although at least 60 % of funds are required

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to go toward clinical services (including cancer screening and diagnostic follow-up services, case management, tracking, and follow-up), the NBCCEDP takes a ‘‘comprehensive’’ approach to breast and cervical cancer screening and diagnosis that, in addition to clinical services, includes the components of data collection/management, quality assurance and improvement, partnerships, professional development, recruitment, patient education/ outreach, evaluation, and program management [1, 5]. Between 1991 and 1992, CDC funded 12 states to begin breast and cervical cancer early detection programs, and an additional 18 states were awarded capacity-building grants to create the requisite infrastructure [1, 5]. The Preventive Health Amendments of 1993 to the Breast and Cervical Cancer Mortality Prevention Act of 1990 authorized the NBCCEDP to directly fund American Indian and Alaska Native tribes and tribal organizations as qualifying health agencies [1, 5–7]. By 1997, the NBCCEDP was a nationwide initiative with all state health departments participating. Currently, all 50 states, the District of Columbia, five US territories, and 11 tribes/tribal consortia are funded for comprehensive screening programs through the NBCCEDP, as defined above [1]. In 1998, another amendment to the original law, the Women’s Health Research and Prevention Amendments of 1998, allowed the NBCCEDP to add case management for women with abnormal screening results as an official program component [8]. Many other formal policy and programmatic changes are part of the rich history, development, and strengthening of the NBCCEDP over time [1, 5].

Cancer treatment The federal law that created the NBCCEDP intentionally did not allow coverage for the treatment of the cancers and cervical pre-cancers diagnosed through the NBCCEDP efforts. The law intended for the NBCCEDP to be a partnership between the federal government, state and local health agencies, and the communities in which women live and receive their health care [1, 9]. The federal government offered monetary resources and technical assistance to increase screening and early detection, while states and local areas were still expected to provide treatment and ongoing care for women diagnosed with cancer. Although the law mandated that local treatment resources be assured before any screening could take place, concerns about a public program screening low-income and uninsured women for cancer without providing treatment grew during the 1990s. Even with the policy change in 1998 to include case management as a component, some critics remained concerned that women diagnosed through the NBCCEDP were not receiving all or some of their

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needed treatment, were delaying treatment, and/or were going into devastating debt [9]. NBCCEDP data and a special evaluation revealed that the problem was primarily of a different nature [9–11]. While the vast majority of women diagnosed through the NBCCEDP were in fact initiating treatment in a timely fashion, a real and very serious problem was that the state programs were restricting the number of women screened in order to assure the capacity to deal with treatment for those clients in need of treatment. In addition, the approaches taken to identify and continually secure local treatment resources were labor intensive, patchwork, and dependent upon a beleaguered safety net, raising important questions about efficiency, effectiveness, and sustainability in the long term [10, 11]. The National Breast Cancer Coalition and other advocacy organizations worked with CDC leadership to address this problem [9]. The result was a companion law, the Breast and Cervical Cancer Prevention and Treatment Act of 2000, which provided states the option of allowing women diagnosed with pre-cancer or cancer through the NBCCEDP to be eligible for the state Medicaid program [12]. By 2005, all states had implemented this optional and unique Medicaid expansion, which allows NBCCEDP clients diagnosed with invasive breast or cervical cancer or cervical pre-cancer to receive full Medicaid coverage, including non-cancer-related healthcare needs, for the duration of their cancer treatment. Specifics regarding eligibility, how the length of cancer treatment is defined, and the healthcare services covered vary somewhat by state. Early research on the effects of this Medicaid expansion suggested that, although the average length of time between diagnosis and treatment initiation increased slightly for cervical cancer, most women were getting into treatment within the timeframe of quality benchmarks [13]. There appears to be an acceptable trade-off between taking some additional time (less than 2 weeks and unlikely clinically significant) to get enrolled in Medicaid and connected with a provider, and having all treatment and other healthcare costs covered.

NBCCEDP impact Since the early 1990s, when this large public health initiative first started screening women through 2013, NBCCEDP-funded programs have served more than 4.6 million women, provided more than 11 million breast and cervical cancer screening examinations, and diagnosed more than 64,000 breast cancers, 3,500 invasive cervical cancers, and 167,000 premalignant cervical lesions, of which 40 % were of high grade [14]. Between 1991 and 2011, 23 % of women screened for cervical cancer and 25 % of women screened for breast cancer were Hispanic.

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In the same time period, 13 % women screened for cervical cancer and 16 % of women screened for breast cancer were black, non-Hispanic [5]. Data reveal that the women screened through the NBCCEDP receive diagnostic followup and initiate treatment according to the quality benchmarks set by the NBCCEDP [15, 16]. However, data also suggest that racial/ethnic disparities exist in meeting these quality benchmarks within the NBCCEDP clientele, similar to the rest of the US population [13]. A significant amount of surveillance, epidemiologic, program evaluation, and other research has been conducted at the state and federal levels regarding the NBCCEDP [13, 15–18]. Importantly, simulation modeling and other analyses have demonstrated that the NBCCEDP has significantly reduced breast and cervical cancer mortality among low-income uninsured and underinsured women in the USA, a major goal of the original legislation. [19–21] In addition, research generated by the NBCCEDP has greatly increased knowledge regarding breast and cervical cancer screening in general, especially in medically underserved populations and resource-poor environments [5–8, 22– 24]. This nationwide public health initiative has served to build cancer prevention and control capacity in state and local health agencies and created strong and unique public–private partnerships aimed at improving women’s health [23–26]. As such, the impact of NBCCEDP extends beyond the millions of women served by the program to include improved public health system capacity and effectiveness regarding cancer detection and control for all women.

Looking forward In spite of its impressive reach and impact, the NBCCEDP has been able to serve only an estimated 6.5 and 10.6 % of the eligible women for cervical cancer screening and breast cancer screening, respectively [27, 28]. The NBCCEDP’s current level of funding is not sufficient to serve every woman who is eligible for program services. Importantly, the implementation of the Patient Protection and Affordable Care Act (ACA) is unlikely to eliminate the need for NBCCEDP screening and diagnostic services [30]. Although the number of uninsured women in the country has already been reduced, given large number of states that have opted not to participate in the Medicaid expansion supported by the ACA, many low-income women will remain uninsured or underinsured [29, 30]. Based on the predicted reduction in the female uninsured population of each state after implementation of the ACA, the percent of eligible women served by the NBCCEDP is estimated to increase; even so, the percentage served is likely to still be less than one-third of the women who are eligible [31–32]. Moreover, insuring women will not by itself eradicate

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persistent racial and ethnic disparities in breast and cervical cancer morbidity and mortality. Low health literacy, language barriers, geographic distance, and the need for patient navigation also must be addressed [30]. Lessons from the successes and challenges of the NBCCEDP can serve as a constructive guide for partners integrating public health and clinical measures to transform health systems and to improve population health. Successful outreach, individual and community engagement, evidence-based practice, case management, performance measurement, and quality assurance, all supported by robust data systems, have been hallmarks of the NBCCEDP for a quarter century. Organizations committed to improving population health can find examples of how to do so by examining elements of this important, successful, and model public health initiative.

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The National Breast and Cervical Cancer Early Detection Program: 25 Years of public health service to low-income women.

This article presents an overview of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), a valuable and successful national pub...
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