Lessons Learned From Free Cancer Screening for Poor US Women

Zosia Chustecka

August 07, 2014

A huge national program in the United States that offers free screening for breast and cervical cancer to low-income and uninsured women has served more than 4 million women since it began in 1990, likely preventing thousands of cancer deaths that would have otherwise occurred.

The success of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) from the Centers for Disease Control and Prevention (CDC) has led to a call for the lessons that have been learned from this program to be implemented across the American healthcare system.

Details of the program's activities are outlined in a series of reports published online August 5 in Cancer, and scheduled to appear in print in an August 15 special supplement.

This is the first time that details of the screening activities have been published, the CDC noted in a press release.

The program was begun in 1990, when Congress approved $30 million for the first year of the program.

In fiscal year 2010, the CDC awarded more than $161 million in grants for the program.

In the 20 years from 1991 to 2011, more than 4.3 million women with limited access to healthcare were screened; the number of women served has increased from 82,000 annually in the first couple of years to more than 500,000 per year since 2003.

In total, the program has provided more than 10.7 million breast and cervical cancer screening examinations.

As a result, a total of 56,662 breast cancers, as well as 3206 cervical cancers and 152,470 precancerous cervical lesions, were detected. More than 90% of these women received appropriate care and timely follow-up, the CDC said.

The estimated cost of providing the cancer screening and diagnostic services was $145 per woman, although the total cost of all NBCCEDP services was estimated at $296 per woman.

The findings show "consistent value" beyond the original purpose of detecting cancers in underserved women, the CDC commented in its press release.

Reaching a Fraction of Eligible Women

Although the NBCCEDP has served millions of women nationally, it currently reaches only a fraction of eligible women, notes a report from Jennifer Miller, MD, from the CDC, and colleagues.

Published reports have estimated that the program reaches only about 13.2% of women eligible for breast cancer screening and 9.0 % of women eligible for cervical cancer screening, they note, but more recent analyses have shown that the eligible population has increased and that the proportion of women reached has decreased to 11.7% for breast cancer screening and to 8.2% for cervical cancer screening. That means that a large proportion of uninsured women are not receiving the recommended screening, they emphasize.

Among the barriers that prevent the program from reaching eligible women are structural, interpersonal, financial, and cultural factors, notes another report from Whitney Levano, MPH, from the Utah Department of Health in Salt Lake City, and colleagues. These include but are not limited to lower education levels; lack of knowledge about cancer and cancer screening; distorted perceptions of risk and susceptibility to cancer; cultural beliefs and low literacy; mistrust of doctors and the healthcare system; fear, worry, anxiety, and embarrassment regarding screening; concerns about screening-related pain; safety and efficacy; language and acculturation issues; lack of access and transportation issues; lack of social support from friends, family members, and medical providers for screening; and out-of-pocket costs.

The cancer screening services are provided by the NBCCEDP are provided at no cost to women who are eligible. This has been emphasized in some of the publicity campaigns, such as the: "Testing, As Easy as One, Two, FREE" campaign slogan in Utah, and the "Uninsured? ASK ME how to get FREE cancer screening" campaign that ran in New York State.

Focus on Reducing Disparities

How the NBCCEDP was set up is outlined in a report authored by Nancy Lee, MD, from the Office on Women's Health at the US Department of Health and Human Service, and colleagues.

At the time when the program began (in 1990), mammography and Pap tests were recommended by both the American Cancer Society (ACS) and the US Preventive Services Task Force (USPSTF) as primary cancer screening tests.

However, a national survey conducted a few years earlier, in 1987, had found that only around 25% of all women in the United States aged 50 years and older were receiving regular mammograms to screen for breast cancer, while around 75% of all women aged 18 years and older had received Pap testing within the preceding 3 years to screen for cervical cancer.

Recent figures show how much screening has increased in the United States. Results from the 2010 National Health Interview Survey indicate that overall about 72.4% of women in the United States get mammograms and 83.0% undergo Pap testing according to screening guidelines.

However, poor, nonwhite, and uninsured women were much less likely to have undergone either screening, and the NBCCEDP was set out to focus on these women.

A major focus of the NBCCEDP is to help decrease disparities in breast cancer, note Dr. Miller and colleagues. Among the women who are screened for breast cancer, 47.7% are white non-Hispanic, followed by 24.5% Hispanic and 16.1% black non-Hispanic. The remaining 11.6% is made up of Asian/Pacific Islanders, American Indian/Alaska Natives, and multiracial or unknown races.

The program also focuses on disparities in cervical cancer by targeting low-income women who are rarely or never screened, who account for a large portion of cervical cancer cases, Dr. Miller and colleagues note. Of the women receiving Pap testing, 50.2% are white non-Hispanic, 23.1% Hispanic, 13.2% black non-Hispanic, and the remaining 13.4% are Asian/Pacific Islanders, American Indian/Alaska Natives, and multiracial or unknown.

Over the years, the program has evolved to incorporate new technologies as they become available, Dr. Lee and colleagues comment, citing as examples the incorporation of liquid-based cytology for Pap tests in 2005 and full-field digital mammography in 2009.

The program has recently also included the use of human papillomavirus testing in addition to Pap testing, known as cotesting, after this was recommended in a 2012 addition to the USPSTF guidelines on cervical cancer screening, Dr. Miller and colleagues note. They comment that, for the most part, the program follows the recommendations of the USPSTF.

Support From Many Partners

Dr. Lee and colleagues emphasize the support that the program has received from partnering with a number of organizations, including the ACS, Susan G. Komen for the Cure, the Young Women's Christian Association (YWCA), and also Avon (which through its pink ribbon campaigns has raised and donated more than $815 million to breast cancer programs around the world over the past 21 years).

There are also partners on a state levels, such as Pennsylvania's Healthy Woman Program, which promoted the Mother's Day mammogram, as well as Indiana's Secret Sister Society and Nebraska's Every Woman Matters campaign.

Over the past 20 years, these NBCCEDP partners have invested a substantial amount of their resources to this program, point out another group of authors, led by Donatus Ekwueme, PhD, from the CDC.

"We estimated that the value of in-kind donations to the NBCCEDP by its partners amounted to $45 per woman served, or 15% of the estimated $296 weighted average cost per woman served in the program," they write. "These in-kind donations are a clear indication of the strong commitment that NBCCEDP's various partners have to the program and have been instrumental in advancing the program's ultimate goal of providing all US women with access to breast and cervical cancer screening, diagnosis, and treatment services," they add.

"The NBCCEDP is mandated by law to allocate about 60% of its resources to clinical services," Dr. Ekwueme and colleagues point out. "In this study, we found that 57.5% of the program resources (excluding the value of in-kind donations) are allocated to clinical services, indicating that program administrators are, on balance, adhering to this mandate."

Women Covered by The Program

Because Congress intended for the NBCCEDP to be for low-income women, an early task was to define low income, Dr. Lee and colleagues write. The CDC has defined eligibility for the program to include women who have incomes at or below 250% of the federal poverty level, and who are uninsured or underinsured. The latter category includes women who have insurance that does not cover breast or cervical cancer screening and women who cannot afford their insurance deductibles or copays.

Further details on eligibility are outlined by Dr. Miller and colleagues. The NBCCEDP target population includes low-income women who are uninsured or underinsured, they explain. For breast cancer, women aged 40 to 64 years are eligible for services. For cervical cancer, women aged 21 to 64 years are eligible. (Before the change in cervical cancer screening guidelines in 2012, women aged 18 to 20 were also eligible for cervical cancer screening, they note.)

Because the burden of these cancers is higher in some groups, priority populations have been set to include women aged 50 to 64 years for breast cancer and those rarely or never screened for cervical cancer.

Women older than 64 years are not eligible because they are insured by Medicare, which covers these clinical preventive services. However, if a woman cannot pay the premium to enroll in Medicare Part B and is income-eligible for the NBCCEDP, she may receive NBCCEDP services.

Women who are older than age 65 currently account for approximately 1% of the women enrolled in the program, Dr. Miller and colleagues note.

Extrapolating From the Lessons Learned?

Praising the NBCCEDP for having provided millions of screening exams to millions of women, and thus having prevented breast and cervical cancer deaths that otherwise would have occurred, top officials from the ACS ponder on extrapolating some of the lessons learned to the wider American healthcare system. Robert Smith, PhD, senior director of the ACS cancer screening, and Otis Brawley, MD, chief medical officer of the ACS, write that "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."

"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," they write. "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."

"In the United States, most cancer screening does not occur in an organized program," they point out, "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."

"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," Dr. Smith and Dr. Brawley write.

"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," they note, and add that "access and benefits are not equally shared by all US citizens."

"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," they comment.

"Furthering the nation's population health goals requires greater levels of organization in cancer screening. The time to move in that direction is now," Dr. Smith and Dr. Brawley conclude.

The Only National Program in the United States

The call to action is taken up by the CDC's Marcus Plescia, MD, MPH, and colleagues in another report.

"With 22 years of experience in effectively leading and managing a national organized breast and cervical cancer screening program, the NBCCEDP is ideally suited to collaborate with healthcare systems, payers, and purchasers to support the use of appropriate and high-quality breast and cervical cancer screening through expansion of organized approaches to screening," they write.

"The NBCCEDP is the only nationally organized breast and cervical cancer screening program in the United States," they write. It has "successfully weathered the test of time by effectively serving diverse populations of women through public health and primary healthcare delivery systems established across the entire country through states, territories, and tribes."

"This program was designed on the basis of a public health model that spans the cancer screening continuum from raising awareness among women about the importance of getting screened to assuring timely diagnosis and appropriate treatment referral for women diagnosed with cancer," Dr. Plescia and colleagues comment.

"The NBCCEDP is well positioned to build on its experience," they continue, as well as "its established clinical and community partnerships."

"The program can adapt its extensive experience with establishing and managing an organized system of delivering cancer screening for low-income women and apply it to promote a more organized approach to screening through healthcare systems on a larger population level," the CDC researchers comment.

Cancer. Published online August 5, 2014. Abstract


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