The National Breast and Cervical Cancer Early Detection Program: Toward a system of cancer screening in the United States

Authors

  • Robert A. Smith PhD,

    Corresponding author
    1. Senior Director, Cancer Screening, American Cancer Society, Atlanta, Georgia
    • Corresponding author: American Cancer Society, 250 Williams St, Atlanta, GA 30303; robert.smith@cancer.org

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  • Otis W. Brawley MD

    1. Chief Medical Officer, American Cancer Society, Atlanta, Georgia
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  • The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Abstract

In the mid-1980s when there was a shift in public health priorities toward the prevention and control of chronic disease, the Centers for Disease Control and Prevention (CDC) developed a screening program based on the core elements of surveillance, public and provider education, quality assurance, and national and local collaborations. With the Affordable Care Act providing coverage for millions of individuals, the CDC now has an opportunity to focus on recommended cancer screenings through an organized approach versus an opportunistic approach. Cancer 2014;120(16 suppl):2617-9. © 2014 American Cancer Society.

By the mid-1980s, the concept of the second epidemiological revolution was already having a profound effect on the Centers for Disease Control and Prevention (CDC).[1] The organization had led the unparalleled achievement of eliminating smallpox[2] and with what appeared to be the waning of infectious diseases as major health problems (this perception proved premature), it was time for a shift in public health priorities toward the prevention and control of chronic disease. In the mid-1980s, CDC's early investment in cancer-related cooperative agreements with states focused on understanding high rates of invasive cervical cancer in low-income populations. Already there had been a dramatic decline in cervical cancer deaths and incidence in the United States that was associated with Papanicolaou smear screening,[3] so what factors accounted for a persistent, elevated rate of invasive cervical cancer in certain populations?[4, 5] These cooperative agreements revealed a core finding that persists today as an important factor in the diagnosis of advanced-stage cancers, that is, absence of health care encounters and numerous missed opportunities during health care encounters to ascertain whether the patient had recently or even ever been screened.[6] During a discussion about these findings with the leadership of the newly formed Center for Chronic Disease Prevention and Health Promotion, then–CDC director James Mason, MD, posed the question, “Could we eliminate death from cervical cancer?” Theoretically, he was told, the answer is “yes.”

Thus began the march toward a national program for the control of cervical cancer. Because the target age group of women for cervical cancer interventions also was the target age group for breast cancer interventions, CDC's leadership wisely chose to build an even more ambitious program that would focus on reducing avoidable deaths from cervical and breast cancer. In keeping with CDC's historic role in working with states and strengthening public health infrastructure, the planning focused on the core elements of a successful screening program, that is, surveillance, public and provider education, quality assurance, and national and local collaborations. During planning for the program, congressional staff posed the question of how low-income, uninsured women could equally benefit from state-based programs to increase breast and cervical cancer screening rates. Apart from some immunization programs, CDC had never been a direct provider of health care, and CDC officials could only answer that hopefully local programs would find a way to meet the needs of the medically underserved. CDC was then advised to include a provision to support states to help cover the cost of screening for low-income women. Twenty years later, the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has provided millions of screening exams to millions of women, and prevented breast and cervical cancer deaths that otherwise would have occurred. Indeed, it can be argued that from the very beginning this provision of funds to pay for screening became the best-known feature of the NBCCEDP, overshadowing the other elements that contribute to the delivery of high-quality screening and program evaluation.

The NBCCEDP has shed some light on the plight of adults who do not have access to cancer screening without programs that either cover the costs of screening, diagnosis, and treatment or seek donated care from clinicians, institutions, and advocacy groups, with the latter requiring substantial staff time to organize and coordinate. Under the Affordable Care Act (ACA), we hope that there will be a steadily diminishing fraction of the adult population without access to cancer screening, but at this time roughly half the states have chosen to not expand Medicaid. Thus, millions of adults still will be without coverage, and the need for CDC-state partnerships to cover those costs will continue. However, it also is the case that provisions of the ACA measurably increase access to cancer screening among currently and newly insured adults. Further, provisions of the ACA support greater systemization in the delivery of health care, thus providing the CDC and the NBCCEDP with new opportunities to support the implementation of features of organized screening.

It is generally accepted that organized screening is superior to opportunistic screening for the simple reason that screening is best understood as a continuum of events, each interdependent of the others. Thus, a “system” in which these elements are interrelated and interdependent and within which rules, roles, and relationships are well defined has a better opportunity to outperform screening that is conducted opportunistically and outside a system. As part of a joint initiative between the CDC, the National Cancer Institute, and the American Cancer Society to summarize the evidence on lessons learned during the implementation of cancer screening programs,[7] Miles et al compared and contrasted organized screening programs with opportunistic screening (Table 1).[8] For example, a common feature of organized screening programs is issuing invitations to screening from a central registry (Table 1, Lesson 4). If all eligible adults are included in a centralized call-recall system, then timely reminders to the target population can be issued based on recommended guidelines, independent of encounters with health care providers. Not only can these reminder systems be tailored to individual risk, but they also can contribute to reducing overscreening, which occurs when screening begins too early, occurs with greater than recommended frequency, and continues past the point where an adult would benefit. In contrast, in the United States most cancer screening does not occur in an organized program, but instead occurs opportunistically during encounters with providers where cancer screening either is performed or a referral for screening is made. Few adults receive invitations to screening from a central source. Although a growing number of primary care practices have electronic medical records (EMRs), few are being used for managing patient populations, for example, linking the EMR to a reminder system for screening.[9]

Table 1. Lessons Learned From Countries With Organized Screening Programs
  1. Organized screening has greater potential ability to reduce cancer incidence and mortality because of higher achievable levels of population coverage, follow-up, and quality compared with opportunistic screening.
  2. Organized screening programs aim to achieve a population-level benefit and a balance of benefits and harms; as a result, organized programs may not provide screening that offers maximum protection to each individual but does offer them greater protection from harms.
  3. Equality of access is often a key principle of health care provision in countries with organized screening.
  4. In organized programs, the opportunity to be screened is determined by health policy and by the adequacy of the call-recall system; in opportunistic screening, the opportunity is determined to a greater extent by individual factors, such as the knowledge and behavior of patient and provider, insurance coverage, and the patient's pattern of encounters with health services.
  5. Cost of screening as a barrier is largely remedied by organized programs, but limitations in terms of access remain.
  6. Organized programs do not eliminate socioeconomic and ethnic disparities in the uptake of cancer screening, and each model faces challenges related to informed consent.
  7. Introducing an organized system of screening presents many challenges related to existing and required infrastructure, resources, vested interest, and public and provider acceptance of centralized health care.

Although breast and cervical cancer screening rates in the United States are respectable, they are not optimal. Too many women either have never been screened or are not screened regularly, in part because of the simple lack of systems to issue timely reminders. Other features of an organized screening program would also be beneficial. In addition to the challenge of ensuring regular screening, public and health care professionals need to be informed about best practices and need information to support informed and shared decision making. Reminders alone cannot overcome cultural, institutional, and idiosyncratic barriers that prevent some adults from participating in cancer screening. Thus, a registry to issue invitations will not fully replace the important role of counseling from a trusted clinician. The quality of screening requires ongoing monitoring and feedback for reassurance that quality measures are being met or corrective actions are taken when measures are not met. Poor quality in screening contributes to missed opportunities to achieve the goals of screening and increased harms. Finally, each element of a screening program needs ongoing evaluation.

In the United States, introducing greater levels of organization into cancer screening will be an enormous challenge, but the potential is very good, and the benefits would be substantial. Many of us involved in cancer screening have noted that cancer screening in the United States has produced results similar to those in organized European programs, but at a greater cost, whereas access and benefits are not equally shared by all US citizens.[10] The CDC has an opportunity to focus on all cancer screenings recommended by the United States Preventive Services Task Force, and to emphasize the importance of primary care delivery models taking an inclusive approach to cancer screening versus an opportunistic approach in which a patient may be in compliance with breast and cervical cancer screening recommendations but will not have been referred for colorectal cancer screening. A greater degree of organization could also shorten the period to introduce new screening tests into practice once convincing evidence is available.

A recent Institute of Medicine (IOM) report on the integration of primary care and public health recommended that “the Secretary of HHS should work with all agencies within the department as a first step in the development of a national strategy and investment plan for the creation of a primary care and public health infrastructure strong enough and appropriately integrated to enable the agencies to play their appropriate roles in furthering the nation's population health goals.”[11] This is a clear call for better integration and dedication among key organizations to improve the nation's health. It also seems to offer a clear opportunity for the CDC to identify opportunities to implement the recommendations of the IOM report and increase systemization and organization of cancer screening. A first step would be to announce an initiative with state health departments to develop robust relationships with state primary care organizations, health care delivery organizations, health plans, and othrs to achieve high rates of high-quality cancer screening. Although it is not clear how the key players—primary care, health plans, state agencies, and others—would work together to develop elements of an organized system, the importance of greater organization to achieve better outcomes is self-evident. Reminder systems could be organized at the state level, by the health plan, or by the primary care practice. There are pros and cons associated with each option, but there is no disputing that reminder systems outperform opportunistic screening,[12] and every adult who is eligible for cancer screening should be able to depend on notification of when tests are due. The move toward medical homes holds the potential for every adult to have a regular source of care that is comprehensive and enduring and where attention to preventive care needs is not dependent on the time available during acute care visits.[13] Other features of organized screening can be pursued through these initiatives as well, such as the importance of health care professionals receiving feedback on their cancer screening rates and performance in the delivery of cancer screening tests. Public and professional education can also become part of an organized, population-based cancer screening program in which needs are identified and addressed. Furthering the nation's population health goals requires greater levels of organization in cancer screening. The time to move in that direction is now.

FUNDING SUPPORT

This Supplement edition of Cancer has been sponsored by the U.S. Centers for Disease Control and Prevention (CDC), an Agency of the Department of Health and Human Services, under the Contract #200-2012-M-52408 00002.

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

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