Excess Cervical Cancer Mortality

A Marker for Low Access to Health Care

in Poor Communities

An Analysis

Center to Reduce Cancer Health Disparities

U. S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health

National Cancer Institute

Excess Cervical Cancer Mortality: A Marker for Low Access to 

Health Care in Poor Communities

NCI Center to Reduce Cancer Health Disparities

Harold P. Freeman, M.D., Director

This publication is available on the Center to Reduce Cancer Health Disparities Web site:

http://crchd.nci.nih.gov

Suggested citation for the report:

Freeman HP, Wingrove BK. Excess Cervical Cancer Mortality: A Marker for Low Access to Health Care in

Poor Communities. Rockville, MD: National Cancer Institute, Center to Reduce Cancer Health

Disparities, May 2005. NIH Pub. No. 05–5282.

For additional copies, please contact:

Center to Reduce Cancer Health Disparities

National Cancer Institute

6116 Executive Boulevard, Suite 602

Bethesda, MD 20892

Telephone: 301–496–8589

Fax: 301–435–9225

Copyright information:

All material in this report is in the public domain and may be reproduced or copied without

permission; citation as to source, however, is appreciated.

Acknowledgements

The analysis presented in this report represents a synthesis of the findings of a Roundtable

colloquium and two Think Tank meetings convened by the NCI Center to Reduce Cancer Health

Disparities. We wish to acknowledge and thank the following people for their commitment, hard

work, and assistance in the development of this report.

Editor

Barbara K. Wingrove, M.P.H. Chief, Health Policy Branch

Planning, Development and Implementation of Meetings 

Patricia Newman, M.G.A. Manager, Communications

Planning and Logistical Support 

NOVA Research Company (NCI contract number N02–CO–14231)

Center Staff Involved in Program Development

Nada Vydelingum, Ph.D. Deputy Director

Barbara K. Wingrove, M.P.H. Chief, Health Policy Branch

Jane MacDonald Daye, M.H.S. Special Assistant

Susanne H. Reuben Progressive Health Systems

Participants:

Roundtable

• Reducing Health Disparities in High Cervical Cancer Mortality Regions—Phase 1

November 28–30, 2001, Corpus Christi, TX: Appendix A

Think Tanks

• Regions With High Cervical Cancer Mortality—Phase 2

May 8, 2002, Bethesda, MD: Appendix B

• Cervical Cancer Mortality—A Marker for the Health of Poor and Underserved Women: Toward an

Interagency Collaboration to Reduce Disparities

October 28–29, 2002, Bethesda, MD: Appendix C
Special Acknowledgements

Jon Kerner, Ph.D., for leading the organization of the Roundtable event and the concept mapping

exercise.

Susan Devesa, Ph.D., for the preparation of the national maps showing regions with high cervical

cancer mortality.

Suzanne H. Reuben, Progressive Health Systems, for significant help in formulating the Think Tanks,

and for writing, revisions, and consultation on the manuscript.
Director’s Message

A recent report identifying priority areas of health requiring national action,1 including coordination

of care, cancer screening, and self-management/health literacy, noted the stark fact that while “the

United States spends more than $1 trillion on health care annually [and has] extraordinary

knowledge and capacity to deliver the best care in the world...we repeatedly fail to translate that

knowledge and capacity into clinical practice.” 

Nowhere is this failure of our health care system more apparent than in the disparities in cancer

incidence and outcome, as well as in other health issues, suffered by members of particular racial and

ethnic minority subgroups and other underserved populations. These disparities are grim realities

resulting from the longstanding disconnect between (1) our extraordinary biomedical research

discoveries and our ability to turn them into interventions that improve health and (2) our most

distressing inability to deliver those interventions to all of the people who need them.

It is in this context that the National Cancer Institute’s Center to Reduce Cancer Health

Disparities (CRCHD) approached the problem of mortality from cervical cancer, a disease for which

effective prevention—not just early detection—and treatment have existed for decades. Our failure to

provide this lifesaving care to all women through appropriate infrastructure,

information/communication systems, and adequate health care access highlights the urgent need to

analyze our health care system—particularly publicly funded health services—and courageously craft

the changes that will eliminate disparities and save lives. 

Harold P. Freeman, M.D.

Director

National Cancer Institute

Center to Reduce Cancer Health Disparities

Executive Summary

Without question, cervical cancer is a success story in the history of cancer control. Since screening

programs using the Papanicolaou test (Pap test) were implemented widely more than 50 years ago,

cervical cancer deaths have declined 75 percent nationwide. Yet cervical cancer still takes the lives of

approximately 4,000 women in the United States each year. This is particularly disturbing since

virtually all cervical cancers should be avoidable with proper screening, and because effective

treatment is available for precancerous lesions and for invasive cancers that are detected before they

have spread.

The National Cancer Institute (NCI) Center to Reduce Cancer Health Disparities (CRCHD)

postulates that cervical cancer is an indicator of larger health system concerns such as: infrastructure,

access, culturally competent communication, and patient/provider education deficits that

disproportionately affect members of particular racial and ethnic minority subgroups and other

underserved women who also are subject to the negative effects of poverty on health status.

Following a review of the scientific literature and available data on persistent cervical cancer

mortality, CRCHD convened more than 180 Federal, state, and local planning and program

personnel, policy-makers, researchers, clinicians, advocates, educators, and communications specialists

as participants in its Cervical Cancer Mortality Project (CCMP) to explore the components of the

problem, identify critical needs, and suggest actions to meet those needs.

An entrenched pattern of high cervical cancer mortality has existed for decades in distinct

populations and geographic areas. Women suffering most severely from this disparity include African

American women in the South, Latina women along the Texas-Mexico border, white women in

Appalachia, American Indians of the Northern Plains, Vietnamese American women, and Alaska

Natives. A more detailed analysis of two geographic regions where cervical cancer mortality is the

greatest indicates that, in addition to needing targeted interventions and additional resources to

reduce cervical cancer deaths, these communities also experience high mortality rates for other

conditions and diseases for which screening and treatment are currently available.

A recent Institute of Medicine report2 urges the Federal Government, using certain types of

Federal health facilities as laboratories of innovation, to provide leadership in health care quality

improvement efforts. In 2003, the Department of Health and Human Services (DHHS) chose to use

the Progress Review Group (PRG) methodology to facilitate, promote, and coordinate partnerships

among Federal agencies to address persistent cancer disparities, such as the excess cervical cancer
mortality rates in geographic regions and populations, implement new initiatives, and evaluate

progress over time.

The NCI Center to Reduce Cancer Health Disparities recommends specific actions to eliminate

cervical cancer mortality disparities suffered by women in identified geographic regions of the nation

and to improve health care for all underserved women. Each major objective is listed with specific

recommendations for reaching the goal. The recommendations are summarized on Table 1.

In this report, the NCI Center to Reduce Cancer Health Disparities demonstrates that high rates

of cervical cancer are an indicator of broader problems in access to health care. The report argues that

a high rate of cervical cancer is a sentinel marker indicating larger, systemic health care issues that

need to be addressed by cancer control and other strategies. It also illustrates how the

recommendations of the Report of the Trans-HHS Cancer Health Disparities Progress Review Group

(CHPRG), Making Cancer Health Disparities History (http://www.chdprg.omhrc.gov), can be

implemented to improve women’s health in geographic areas experiencing excess cervical cancer

mortality. The correspondence between our recommendations and those of the CHPRG

recommendations are shown in Table 2.
Table 1. Strategies for Reducing Excess Cervical Cancer Mortality

Collaborations, Partnerships, and Advocacy 

Establish and strengthen partnerships to promote “whole woman” approach to care.

Develop and implement an agenda to provide and sustain funding for coalitions, partnerships, and community-based quality health services, education, and prevention programs.

Research

• Optimize HPV testing and HPV vaccine

development to eliminate the primary

biologic cause of cervical cancer.

• Improve screening technologies and

screening interventions to bring

affordable screening to all women.

• Conduct social/behavioral, health

services, and intervention research to

better understand high-risk populations

and develop interventions to improve

their care.

• Improve data collection and surveillance

activities related both to quantitative and

to qualitative understanding of cervical

cancer causes and control.

Access—Outreach, Services, Navigation

• Intensify outreach to women who have

rarely or never been screened for

cervical, breast, or colon cancer and

other screenable/treatable diseases.

• Enable women who rely on publicly

funded health services to have a

“medical home”—a usual source of

health care.

• Provide patient navigators to help

eliminate the disconnects between

screening and follow-up treatment.

• Increase the number of female providers

of the patients’ gender/race/ethnicity.

• Improve coverage and reimbursement for

cancer-related services.

• Improve the quality of care in rural areas

through telemedicine and

multidisciplinary consultations.

Communications and Information

• Improve awareness and knowledge

about cervical cancer through the

development and provision of

linguistically and culturally appropriate

information.

• Improve provider-patient communication

through provider education and

availability of language translation.

• Provide central resource detailing best

practices for cervical and other cancers

including evidence-based interventions.

• Improve medical records maintenance

and retrieval systems through the use of

rapidly evolving information technology.
Table 2. Association of Eliminating Excess Cervical Cancer Mortality Recommendations With

Priority Recommendations of the Trans-HHS Cancer Health Disparities PRG

Recommendations for Eliminating Excess Cervical Cancer

Mortality

• Intensify outreach to women who have rarely or never been

screened for cancer and other screenable/treatable diseases.

• Provide patient navigators to help eliminate the disconnects

between screening and follow-up treatment.

• Improve screening technologies and screening interventions to

bring affordable screening to all women.

• Increase the number of female providers of patients’

gender/race/ethnicity.

• Increase coverage and reimbursement for cancer-related

services.

• Improve the quality of care in rural areas through telemedicine

and multidisciplinary consultations.

• Improve awareness and knowledge through the development

and provision of linguistically and culturally appropriate

information.

• Improve provider-patient communication through provider

education and availability of language translation.

• Provide a central resource detailing “best practices” evidencebased interventions.

• Improve medical records maintenance and retrieval systems

through the use of rapidly evolving information technology.

• Improve data collection and surveillance activities related both to

quantitative and to qualitative understanding of cervical cancer.

• Enable women to have a “medical home”—a usual source of

health care.

• Establish and strengthen partnerships that promote a “whole

woman” approach to care.

• Develop and implement agenda to provide and sustain funding

for coalitions, partnerships, and community-based quality health

services, education, and prevention programs.

• Optimize HPV testing and HPV vaccine development to eliminate

the primary biologic cause of cervical cancer.

• Conduct social/behavioral, health services, and intervention

research to better understand high-risk populations and develop

interventions to improve their care.

Priority Recommendations of the Trans-HHS Cancer Health

Disparities PRG

• Ensure that populations at highest risk have access to age- and

gender-appropriate screening and follow-up services.

• Develop, implement, and evaluate education and training

programs designed to create a diverse and culturally competent

cancer care workforce.

• Ensure that every cancer patient has access to “state-of-thescience” care.

• Support culturally, linguistically, and literacy-specific approaches

for eliminating cancer health disparities. These should include

evidence-based “best practices,” proven interventions, and

outreach strategies.

• Establish new approaches for data collection and sharing to aid

in the study of the effects of cancer and its relationship to

variables such as race and socioeconomic status.

• Collaborate with the private and voluntary health sectors to

ensure that all Americans receive the full range of lifesaving

information, services, and quality care.

• Increase the proportion of HHS agency support targeted

specifically to disease prevention, health promotion, evaluation,

and translational research on cancer health disparities.

• Establish partnerships for and support the development of

sustainable community-based networks for participatory research

in areas of high cancer disparities.
Table of Contents

Why Cervical Cancer Mortality Is Important . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

CRCHD’s Cervical Cancer Mortality Project (CCMP) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Current Knowledge About Cervical Cancer Mortality—Overview . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Sources of Data on Cervical Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Cervical Cancer Mortality in America . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Identified Needs and Strategies to Reduce Cervical Cancer Mortality and Improve Women’s

Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Access—Outreach, Services, and Navigation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Information and Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Collaborations, Partnerships, and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Research Needs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36

Cervical Cancer Mortality Is an Avoidable Cause of Death and a Marker for Conditions That

Contribute to Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36

Addressing Cervical Cancer Mortality Offers an Important Opportunity to Address the Nation’s

Growing Concern About Persistent Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

Vulnerable Populations Must Be Provided With Necessary Preventive, Acute Care, and Disease

Management Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 

Innovation, Commitment, and Creativity Are Crucial to Finding Ways to Use Available Resources

More Efficiently and Effectively . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Leadership and Partnership Are Needed to Create Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Access—Outreach, Services, Navigation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Information and Communication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

Collaborations, Partnerships, and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Appendices

Appendix A: Roundtable Agenda, Preliminary Think Tank Agenda, Participant Roster,

and Executive Summary. Reducing Health Disparities in High Cervical

Cancer Mortality Regions—Phase 1, November 28–30, 2001,

Corpus Christi, TX . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Appendix B: Think Tank Agenda and Participant Roster. Regions With High Cervical

Cancer Mortality—Phase 2, May 8, 2002, Bethesda, MD . . . . . . . . . . . . . . . . . . . . . . . . 69

Appendix C: Think Tank Agenda and Participant Roster. Cervical Cancer Mortality—

A Marker for the Health of Poor and Underserved Women:

Toward an Interagency Collaboration to Reduce Disparities,

October 28–29, 2002, Bethesda, MD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75
1

Excess Cervical Cancer Mortality: A Marker for Low Access to 

Health Care in Poor Communities

An Analysis from the Center to

Reduce Cancer Health Disparities

(CRCHD)

Effectively addressing cervical cancer mortality

can provide a model for action—an opportunity

to address not only the health problems facing

women who are dying from this disease but also

the full set of human circumstances that lead to

health disparities.

Women suffering high cervical cancer

mortality also:

• Tend not to have a usual source of health care

• Are less likely to receive preventive health 

services, including cancer screening

• Have low incomes and educational attainment 

• Have high rates of breast cancer, colorectal 

cancer, cerebrovascular disease,and infant 

mortality

CRCHD is the cornerstone and organizational locus of the

National Cancer Institute’s efforts to reduce the unequal burden

of cancer in society. CRCHD oversees and coordinates the NCI’s

strategic plan to reduce cancer health disparities. Activities of

the Center include health policy analyses and disparities

research focusing on relationships among social, economic,

cultural and environmental factors that cause or contribute to

(1) the disproportionate cancer burden experienced by some

populations and (2) the significant disconnect between research

discoveries and the delivery of their benefits to all. 

Cervical cancer is unquestionably a success

story in the history of cancer control. Since

cervical cancer screening programs using the

Papanicolaou test (Pap test/Pap smear) were

introduced more than 50 years ago, age-adjusted

mortality from cervical cancer overall has

declined three-fold. Because of the Pap test,

which is inexpensive, easily administered, and

effective, and because proven treatment for

precancerous cervical lesions and localized

invasive cancers is available,3 virtually all

cervical cancer deaths should be avoidable. Pap

tests find precancerous lesions that are easily

and effectively treated with colposcopy or

simply watched, since not all precancerous

lesions become cancer. When cervical cancer is

detected before it has spread, it is one of the

most successfully treated cancers,4 though

patients may suffer adverse consequences from

treatment, including infertility and late effects

of radiation and/or chemotherapy.

Recent research discoveries, including

liquid-based cytology, a combined Pap test and

test for the human papillomavirus (HPV) that

causes most cervical cancers, and the

development and testing of HPV vaccines

promise to improve even further our ability to

prevent or identify abnormalities of the uterine

cervix long before they become cancerous. Still,

in 2004 an estimated 3,900 women died from

cervical cancer.5
Why Cervical Cancer Mortality Is

Important

Despite the consistent decline in cervical cancer

mortality overall, an entrenched geographic

pattern of deaths from this disease has persisted

for decades. This ongoing disparity in mortality

from a wholly preventable disease drew the

interest of the National Cancer Institute (NCI)

and led the NCI Center to Reduce Cancer

Health Disparities (CRCHD/the Center) to lead

the inquiry into underlying factors that may

contribute to the disparity. The NCI explored

the hypothesis that in addition to being a cause

of concern, endemic elevated cervical cancer

mortality may be a marker or an indicator of

weaknesses in the health care system

infrastructure, particularly with respect to

medical care access, cultural issues, and health

communication and education issues that

disproportionately affect poor and other

underserved women. Most women living in

areas with high rates of cervical cancer mortality

rely on publicly funded programs for their

health care. A recent analysis of selected SEER

areas confirms that late-stage cervical cancer

diagnoses are more likely in areas that are

economically or socially distressed. The authors

recommend that all distressed areas should

automatically receive public funding.6 Poverty,

in turn, is a human condition marked by

substandard housing, lower educational

attainment, subsistence-level employment, high

unemployment, greater exposure to

environmental toxins, and reduced access to

health care. These conditions, occurring in a

variety of urban and rural settings, also may

affect health status significantly.

The Center further postulated that

addressing issues related to cervical cancer in

areas with high mortality from the disease also

should result in improved overall health status

and reduced mortality in these geographic

regions. Women living in areas characterized by

excess cervical cancer mortality also experience

mortality rates above the national average for

breast cancer, colon cancer, heart disease, stroke,

and other conditions whose outcomes improve

with regular screening or early intervention.

Applying appropriate system improvements

throughout publicly funded health services

could have a broad-reaching effect on women’s

health nationwide.

CRCHD’S Cervical Cancer Mortality

Project (CCMP)

This project was conducted in two major

phases. The first phase focused on collecting

and analyzing both historical and current data

on cervical cancer incidence, screening,

treatment, and mortality in the United States. In

addition, a review of the literature published

between 1966 and May 2001 (and some studies

published between 1950 and 1965) on cervical

cancer mortality among rural women was

commissioned and is detailed in a report.7

From November 28–30, 2001, a Roundtable

meeting was held in Corpus Christi, TX. The

144 participants (see Appendix A) included

Federal, state, and local planning and program

personnel; researchers from several disciplines

with an interest in cervical cancer; clinicians; 

2
advocates; educators; communications

specialists; and NCI planning, cancer control,

and CRCHD personnel. Findings from the data

and literature reviews were shared with the

participants.

Prior to the meeting, attendees were asked

to participate in an online “concept mapping”

exercise in which they submitted ideas for

actions that would reduce cervical cancer

mortality in their state or region. Some of the

suggestions also were for actions at the national

level. All of the ideas submitted were collated,

redundancies were eliminated, and the ideas

were sorted into conceptual categories. The

condensed data were displayed on a “concept

map” that identified clusters of related ideas.

This map was presented to Roundtable

attendees, who were asked to use the possible

focus areas suggested by the clusters as the

nucleus for one-year state action plans. On

November 30, 2001, core members of the

Cervical Cancer Think Tank met at the

conclusion of the Roundtable meeting to review

the suggested activities, actions, interventions,

and policy changes in each of the four

identified focus areas. The Think Tank members

discussed possible priorities among the

suggested actions, primarily at national and

regional levels. All of the Phase 1 activities and

outcomes were described in an interim report8

distributed to Roundtable participants, NCI

staff, and others. The presentations made at

that Roundtable meeting can be viewed at:

http://www.dccps.cancer.gov/d4d/info.

html#conferences. An Executive Summary of

the Roundtable meeting is contained in

Appendix A.

Following the completion of Phase 1

activities, it was decided that further exploration

was needed to gain a better understanding of

demographic, cultural, and environmental

characteristics of specific populations in

geographic areas experiencing high cervical

cancer mortality in order to assess the potential

impact of these factors on the burden from this

disease. A Think Tank meeting was held in

Bethesda, MD, in May 2002 (see Appendix B)

bringing together several members of the group

that convened in November 2001; added to this

diverse group were other participants with

specific experience and expertise in cervical

cancer and with the populations most at risk.

The group discussed factors specific to

Appalachian and other rural whites; rural

African Americans, particularly those in the

Deep South; Latinas living near the TexasMexico border; and Vietnamese American and

other Asian women, particularly those in

California. Though little data was available and

less is known about the causes of cervical cancer

mortality disparities among Native Americans in

the Northern Plains and among Alaska Natives,

it was also acknowledged that these populations

have higher than average cervical cancer death

rates. Data from the 2001 California Health

Interview Survey (CHIS) have been released and

confirm lower rates of cervical cancer screening

among Asian women, including Vietnamese

(http://www.healthpolicy.ucla.edu/pubs/

publication.asp?pubID=85).9

In October 2002, CRCHD staff and selected

participants in the prior Think Tank and

Roundtable meetings presented key project

findings and issues to a group of senior officials

3
4

of Federal agencies that either administer or

finance health services for underserved women

(see agenda and participant roster, Appendix C).

To illustrate the issues of geographic disparities

in cervical cancer mortality, data specific to the

Deep South and Appalachian regions were

presented, but the discussion included all

known affected populations. The focus of the

meeting was to identify ways in which these

agencies could better work together through

collaborations and partnerships to provide

improved and more consistent care to women

needing (1) cervical cancer screening, diagnosis,

and treatment services, and (2) care for other

health conditions to which they are particularly

vulnerable. The discussion also emphasized

identifying interventions, health services, and

policies that could be implemented using

existing resources or, at most, minimal

additional funding.

Current Knowledge About Cervical

Cancer Mortality: Overview

Available statistics show clearly that while all

women in America have benefited from the

overall cervical cancer mortality reductions

achieved over the past few decades, much

remains unclear regarding the reasons for

continuing mortality disparities and the best

ways to address them. Data on the disparities

and factors contributing to them are

accumulating; however, much important

information has yet to be collected.

Sources of Data on Cervical Cancer

Data on cervical cancer incidence and mortality

are available from a number of national sources,

including NCI’s Surveillance, Epidemiology, and

End Results (SEER) cancer registry program, the

National Program of Cancer Registries (NPCR) of

the Centers for Disease Control and Prevention

(CDC), NCI’s Atlas of Cancer Mortality in the

United States, and the Medicare database.

National studies such as the National Health

Interview Survey (NHIS) conducted by the

National Center for Health Statistics (NCHS),

CDC’s Behavioral Risk Factor Surveillance

System (BRFSS), the American College of

Surgeons (ACoS) National Cancer Data Base,

and American Hospital Association (AHA)

surveys provide additional information on risk

factors, screening, and treatment.

In addition, the medical literature

documents studies that explore biologic,

socioeconomic, cultural, environmental, and

other factors that may affect cervical cancer

incidence and mortality. Some of these studies

address selected regional, state, or local

populations. Other studies on topics relevant

but not specific to cervical cancer may be found

in the social and behavioral sciences literature.

Several meta-analyses have examined

specific aspects of cervical cancer prevention

and care. However, as Yabroff et al.10 note, the

published studies have such varied study designs
5

(e.g., sample selection and characteristics,

response rates, method of ascertainment,

definition of rural population) that data cannot

be compared with confidence. In addition, few

studies of screening distinguished between

screening and diagnostic Pap tests or were

corrected for hysterectomy or tubal ligation. As

a result, the independent effects of age, social

class, race, education, and geography on

screening and mortality cannot be

disaggregated, an endeavor further complicated

by the racial, ethnic, age, and cultural

heterogeneity of the affected populations.

Cervical Cancer Mortality in America

An overview of the available literature and data

provide the following picture of cervical cancer

in America:

Geographic Disparities 

Women living in largely rural and suburban

counties in states stretching from northern New

England through Appalachia, in the Deep

South, along the Texas-Mexico border, and in

parts of the central valley of California have

consistently higher rates of cervical cancer

mortality than do women in other parts of the

country (Map 1). Mortality rates have remained

substantially higher in these areas over the past

few decades, but rates have fallen somewhat

even in these high mortality areas as rates have

declined nationwide.

Sufficient information exists to pinpoint,

by county, areas of high cervical cancer

mortality for white and African American

women. For African American women, high

mortality areas tend to be rural. The geographic

mortality pattern is similar among white

women, but with a somewhat more suburban

pattern. The data suggest an urban-rural

gradient (i.e., mortality lower in urban areas,

higher in rural areas) reflecting less access to

care and poorer outcomes, though this has not

been demonstrated clearly.11

Racial/Ethnic Mortality Disparities 

African American women suffer more than

twice the number of cervical cancer deaths per

100,000 population compared with white

women (Maps 2 and 3, pooled white and black

data, 1970–1998). In fact, National Center for

Health Statistics data now available for

1996–2001, adjusted to the 2000 U.S. standard

million population, indicate that while the

cervical cancer mortality rate for African

American women has declined considerably to

5.7 per 100,000 population, it remains the

highest rate of the major (census-defined)

racial/ethnic populations and almost twice the

rate of white women (3.4 per 100,000).12 Rates

are particularly high among black women in the

rural South, but not among black women in the

West.13

Cervical cancer mortality is higher than

average among Hispanic/Latina women living

on the Texas-Mexico border, and among white

women in Appalachia, rural New York State, and

northern New England. It also is known that

American Indians of the Northern Plains and

Alaska Native women have high cervical cancer

mortality rates, but due to the small size of these

populations and small number of cases relative

to the total population, these differences are less
well documented, and maps depicting mortality

patterns currently are unavailable. Cervical

cancer incidence rates are five times higher

among Vietnamese American women than

white women.14 Data are beginning to emerge

suggesting that overall rates of cervical cancer

mortality among native-born women are

declining, while rates among foreign-born

women are increasing, particularly in the South.

The reasons for the persistent disparities in

cervical cancer mortality experienced by these

populations have yet to be elucidated fully.

Socioeconomic Status (SES)-Related Mortality

Disparities

As with other cancers, the risk of dying from

cervical cancer increases with later stage at diagnosis. Available data, though limited, indicate

that higher mortality is associated with lower

income, less education, and lower SES overall.

Among women diagnosed with stage I cervical

cancer, only about 20 percent are those having

lower educational attainment. Similarly, cervical

cancer incidence rises with increasing poverty

and decreasing SES across all racial ethnic

6

Map 1. Cancer Mortality Rates by County (Age-adjusted 1970 U.S. Population) 

Cervix Uteri: All Races, Females, 1970–1998

U.S. = 3.56/100,000

6.32–14.66 (highest 10%)

5.30–6.31

4.79–5.29

4.31–4.78

3.95–4.30

3.64–3.94

3.27–3.63

2.95–3.26

2.52–2.94

1.18–2.51 (lowest 10%)

Sparse data (<12 observed deaths; 1,264 counties; 4.85% of deaths)
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13

Human Papillomavirus (HPV)

Sexually transmitted HPV infection is believed

to be responsible for 90 to 95 percent of all

cervical cancers. The risk of contracting HPV is

influenced by a number of factors, including

age, lifetime number of sexual partners, number

of recent sexual partners, early age at first sexual

contact, and race/ethnicity.19 Many HPV

infections regress spontaneously. Research

suggests that persistent infections are the most

critical for later development of cervical cancer.

Of the more than four dozen strains of HPV, 15

types appear to be most strongly implicated in

cervical cancer, but it is not clear that these

differences are important to mortality. HPV–16

accounts for about 50 percent of all cervical

cancers. HPV types 18, 31, 33, and 44 together

account for an estimated 20 percent.20 A recent

study suggests that 13 percent of the U.S.

population aged 12 to 59 years may have serum

antibodies to HPV–16, demonstrating exposure

and infection. In addition, women are more

than twice as likely as men to have antibodies

to the virus (17.9 percent versus 7.9 percent).21

However, the existence of HPV does not

predict cervical cancer. A recent international

study suggests an association between the

number of full-term pregnancies and increased

risk of squamous cell cervical cancer among

HPV-positive women.22 A second study using the

same data indicates that HPV infection together

with oral contraceptive use for five or more

years significantly increases cervical cancer risk,

but no increased risk was found for HPV-free

oral contraceptive users.23

At this time, HPV testing is not part of

routine gynecologic examination, and current

surveillance systems do not collect data on

geographic variations in persistent HPV

infection that would make it possible to study

the relationship between geographic variations

in HPV infection and variations in cervical

cancer incidence.

A combined Pap/HPV screening test

recently was approved by the Food and Drug

Administration (FDA) as a primary screen for

cervical cancer and its precursors in women

aged 30 and older, and as a followup to any

abnormal Pap test result.24,25 The sensitivity of

HPV testing, particularly in conjunction with

cytology, has been confirmed in studies26,27

conducted through the NCI-funded ASCUS/LSIL

Triage Study (ALTS), which is comparing

alternative strategies for initial management of

mildly abnormal Pap test results.

However, the U.S. Preventive Service Task

Force (USPSTF) concludes that “the evidence is

insufficient to recommend for or against the

routine use of HPV testing as a primary

screening test for cervical cancer.” The USPSTF

found poor evidence to determine the benefits

and potential harms of HPV screening as an

adjunct or alternative to regular Pap test

screening.28
14

Screening Rates

Since 1987, screening rates for all age and ethnic

groups have been increasing,29 but screening

rates remain higher among urban women

compared with those living in rural areas30 and

among younger women compared with older

women.31 As Table 3 indicates, screening rates

also vary by racial/ethnic group and by level of

educational attainment.

Retrospective reviews of the screening histories of women diagnosed with cervical cancer

suggest that 50 to 70 percent of women developing invasive cervical cancer either did not

have a Pap test within the five years prior to 

diagnosis or had never been screened.32,33 BRFSS

data (2002) indicated that, nationally, more

than 85 percent of women had received a Pap

test within the previous three years,34 though

screening rates were higher among younger

women and lower among older women (Figure

1). Factors that may contribute to lower rates

among older women are related to less frequent

contact with gynecologists after the childbearing

years and/or after tubal ligation or hysterectomy. Such lower rates may be appropriate in

older women who have had hysterectomies and

several subsequent negative Pap tests. Indeed,

while the USPSTF strongly recommends screening for cervical cancer in women who have been

sexually active and have a cervix, it recommends against routinely screening women older

than age 65 for cervical cancer if they have been

recently screened, the findings were normal

with Pap tests, and the women are not otherwise at high risk for cervical cancer.35 Lower rates

may also be related to the failure of providers to

recommend or perform the test on many older

women as part of their primary care, particularly

when the patient has comorbidities such as

hypertension or diabetes that are perceived to

pose a more immediate health threat.36

A special analysis of BRFSS data

(1995–1999) conducted by CDC staff for the

Roundtable and the Think Tanks also indicates

that, among white women, those who are

Hispanic, older, less educated, and living in high

mortality counties have the lowest screening

prevalence. Among black women, the only

discernable difference, due to small sample size,

is lower screening rates among those aged 40–64

years. Data available at the time of the

Roundtable and Think Tanks were too sparse to

conduct similar analyses of Asian, Native

American, or other groups.

NHIS data (1990–1999) show that Pap test

use declines with age (while cervical cancer

incidence and mortality risk increase with age).

In addition, these data indicate that women

Table 3. Screening Rates by Population

Characteristic, Women 18 and Older,

U.S. 2000

Race/Ethnicity Rate

White (non-Hispanic) 82

Black (non-Hispanic) 84

Hispanic 77

American Indian/Alaska Native 77

Asian/Pacific Islander 67

Education (years, women 25 and older)

11 or fewer 74

12 81

13 or more 86

Source: 2000 National Health Interview Survey data, NCHS, CDC,

July 2002.
15

with less education, less income, those

uninsured, and those without a usual source of

care are less likely to be screened. However,

other studies37,38 also indicated that a substantial

percentage of women in managed-care plans

who developed cervical cancer had not been

screened in the three years prior to diagnosis.

Conversely, there also appear to be populations

of women who may be getting screened more

often than necessary (e.g., those with

consistently negative Pap tests who continue to

be screened annually). Screening rates also are

affected by cultural factors (e.g., modesty,

fatalism, prohibitions against examination by

male health care providers) and competing life

priorities (i.e., screening may not be perceived as

important compared to income generation and

fulfilling work and family responsibilities).

Several meta-analyses indicate that patientoriented interventions such as reminder letters,

patient education, and financial incentives39,40,41

can be effective in increasing Pap test screening

and followup after abnormal test results.42 These

interventions have been especially successful in

increasing Pap test use among historically

underserved women.43 Likewise, provideroriented interventions, including reminders and

education, can increase screening rates.44

Provider interventions such as these are

particularly important since primary care

providers have reported not notifying patients

Figure 1. Percentage of Women Responding to the Question:

“How Long Has It Been Since Your Last Pap Smear?” by Age Group

Respondents (%)

5+ years ago

18–39 40–49 50–59

Age (y)

60–64 65+

100

80

60

40

20

0

past year past 2 years past 3 years past 5 years

Source: Behavioral Risk Factor Surveillance System, 2002; survey data, Centers for Disease Control and Prevention, access at:

http://www.cdc.gov/brfss/index.htm.
of normal screening results45 and sometimes

failing to notify patients about abnormal

findings.46

Other Cervical Cancer Risk Factors

Smoking has been identified as a contributing

cause of cervical cancer.47 In addition, HIVpositive women are at increased risk for cervical

intraepithelial neoplasia (CIN) and cervical

cancer, which tend to be more progressive and

aggressive in these women.48 The CDC lists

cervical cancer as an AIDS-defining condition.49

Diagnosis and Treatment Patterns

Available studies on diagnosis and treatment

patterns for cervical cancer do not paint a clear

picture of this aspect of care, particularly with

regard to insurance status. Not surprisingly, data

from ACoS-accredited hospitals, which tend to

serve more affluent and better-educated

populations,50 suggest that lower-income women

are more likely than higher-income women to

be diagnosed at a later stage of disease.

Uninsured women are more likely to be

diagnosed with late-stage cervical cancer than

those with private insurance.51 Women in

Medicare managed-care plans and HMO

enrollees under age 65 tend to be diagnosed at

earlier stages of disease than are women in

traditional fee-for-service (FFS) plans.52,53

Limited state-level data provide additional

information. For example, research in Michigan

linking Medicaid, cancer registry, and death

certificate data54 in that state indicate that about

the same percentage of women in Medicaid

HMO/managed-care and fee-for-service plans are

diagnosed at early stages, but, as in other

populations, later-stage diagnosis increases with

age. Notably, older Medicaid patients in longterm care facilities are more likely to be

diagnosed at later stages than women not in

institutionalized settings. It is unclear what

portion of this problem reflects comorbidities

versus the place of residence. The Michigan

research also suggests that poor patients with no

health coverage prior to diagnosis and subsequent Medicaid coverage, and those without

continuous coverage of any kind, are more

likely to be diagnosed at later stages and die.

The ACoS data indicate that black women

are more likely than white women to receive no

treatment after a diagnosis of cervical cancer,

regardless of disease stage. The differences

detected in this sample are likely to be

magnified in rural and other medically

underserved and poor populations. AHA data

include non-ACoS hospitals; these hospitals are

more likely to be smaller and have fewer fulltime medical personnel. They more often are

located in rural counties with low income and

educational attainment, and in counties with

higher cervical cancer mortality. They also are

less likely to have oncology and radiation

services. Eighteen percent of all U.S. counties

have no hospital, and cervical cancer mortality

is markedly higher in these counties compared

to those with hospitals.

SEER data for 1992–1997 indicate that

patients with stage I disease (more than half of

all cases), particularly those under age 50, are

more likely to be treated with surgery alone

than are older women, who are more likely to

16
17

be treated with surgery plus radiation. Women

with more advanced disease are most likely to

be treated with radiation as the primary

modality.55 Adding chemotherapy to the

treatment regimen lengthens survival but

provides only modest reductions in mortality.

A small population of women exists who are

diagnosed but whose disease appears to be

unstaged and untreated. Data on this

population show no significant differences in

treatment by race, income, or educational level

at any disease stage. Overall, 5 percent of

patients do not receive treatment, but up to 20

percent of women over age 65 with stage II–IV

disease are receiving no treatment.56

Identified Needs and Strategies to

Reduce Cervical Cancer Mortality

And Improve Women’s Health

CCMP participants identified four major areas of

emphasis in which policy changes and

interventions at Federal, state, and local levels

could significantly impact women’s health and

reduce cervical cancer mortality, particularly in

high mortality geographic areas:

• Access, including services, outreach, and

navigation

• Information and communication

• Collaborations, partnerships, and advocacy

• Research

To reduce excess cervical cancer mortality,

it is essential to understand the diverse cultures

and risk factors of affected populations and the

barriers to care they face. Populations in the

geographic areas with highest cervical cancer

mortality are quite heterogeneous, even within

major racial/ethnic groups. Further, factors that

appear to be patient group characteristics may

in fact be system or infrastructure

characteristics. However, some characteristics are

shared by most women at high risk of cervical

cancer mortality: poverty, lack of insurance,

distance from health care, modesty (particularly

among older women), fatalism concerning

cancer, patriarchal cultures, a distrust of

government and mainstream medicine, and a

resilience that enables these populations to

survive under harsh living conditions.

Access—Outreach, Services, and Navigation

Access includes both financial and physical

access to necessary services as well as outreach

and navigation services that enable access.

CCMP participants identified seven (7) highpriority issues that address access to quality

health care:

1. Enabling Patients to Have a “Medical Home”

Data from the 2000 National Health Interview

Survey57 show that the greatest disparities in Pap

test use (during the previous three years),

defined as differences between the highest and

lowest groups for all age groups combined, were

associated with having or not having a usual

source of care (26 percentage point difference),

age (a significant downward gradient with

increasing age), and immigration within the

past 10 years compared with U.S.-born or less

recently immigrated women. Disparities also
18

were observed by level of education, family

income, chronic disability, race, and ethnicity,

but these differences were not as great as those

due to health care access, age, and immigration.

CCMP participants emphasized strongly

the need for women at risk for cervical cancer,

other cancers, and other chronic conditions to

have a “medical home”—a usual source of

medical care where the patient can receive

screening and counseling, experience continuity

of care, and develop trusting relationships with

the medical staff. The medical home also can

serve as a hub with linkages to other

community services.

Among the suggestions for improving

access to health services were:

• Leveraging resources by adding cervical health

and other screening services to the services

offered at existing clinics, health centers, or

other provider sites.

• Building necessary infrastructure where it does

not yet exist.

• Basing resource distribution and redistribution

on small-area analyses of areas of greatest

need.

• Encouraging state health departments to take

the lead in efforts to improve services for

high-risk populations.

CCMP participants suggested that access

issues in high mortality regions may have more

to do with inadequate primary, tertiary, and

support service infrastructure and problems

linking primary care clinics to the hospital

system than factors such as race or ethnicity.

Primary health services available in regions

experiencing high rates of cervical cancer and

other disease mortality offer the possibility of

coordination of a more extensive range of social

and medical services. These include Health

Resources and Services Administration (HRSA)-

funded health centers, which include

community health centers (CHCs), migrant

health centers, homeless health centers, and

public housing primary care centers.58 For more

than 30 years, HRSA-funded centers have been a

safety net for underserved communities,

providing primary health care for some of the

nation’s most vulnerable populations. These

centers also receive a substantial portion of their

revenues from the Centers for Medicare and

Medicaid Services (CMS) through Medicaid

funding.

Approximately 40 percent of CHC patients

are uninsured, and almost 90 percent are low

income. More than two-thirds of patients have

incomes below the poverty level. More than 10

million people receive medical services at almost

4,000 sites. In some communities, CHCs are the

predominant source of care.59

In addition to the network of HRSA-funded

centers, a patchwork of approximately 3,300

rural health providers serves many of the

underserved women in areas of high cancer

mortality. Many of these rural health providers

are private practices, clinics within rural

hospitals, or small part-time clinics in remote
areas. Those certified as rural health centers by

CMS receive reimbursements from Medicaid and

Medicare that include an added reimbursement

factor to help them remain viable in their

locations. Because of financial pressures,

however, the number of these rural health

centers is declining in many areas, including

Appalachia. To maintain and better integrate

health services in rural areas, it will be

important to include this group of providers.

Though the rural providers are not obligated to

participate in a demonstration project or other

initiative to establish an integrated rural health

system, they may be able to play a role in

cervical cancer education and counseling. A

sampling of the range of types of services that

could be organized to play a role in cervical

cancer education and counseling. is presented in

the following paragraphs.

Other nonfederally funded health centers

exist that are structurally similar to HRSA

centers. Like HRSA and Indian Health Service

(IHS) or tribally operated primary care centers,

many have been designated Federally Qualified

Health Centers (FQHCs) and, as such, receive

cost-based reimbursements from Medicaid and

Medicare.60 As in federally funded programs, the

percentage of patients who are enrolled in

Medicaid managed-care plans has increased in

recent years.

In some locations, state and county health

department facilities and private primary care

practices also provide primary care. States and

counties may provide categorical maternal and

child health care, immunizations, STD (sexually

transmitted disease) treatment, or other targeted

programs through Federal or other grants. Some

patients who have no primary care facility in

their local area or who choose not to seek care

at available clinics may rely on emergency

rooms for their primary care needs.

In a project currently under way in Texas

and funded by the Robert Wood Johnson

Foundation, researchers are attempting to link

medical and community services to provide a

medical home with culturally responsive health

care for women at high risk for cervical cancer

who do not have a physician or health

insurance. Representatives from area primary

and specialty care facilities, public housing

health service programs, other system

components, academia, and the business

community are participating on the project

steering committee.

2. Eliminating the Disconnects Between Primary

Care, Screening Services, and Followup/Treatment

at Hospitals 

Linkages between HRSA primary care centers

and area freestanding screening and hospital

services often are tenuous. Similarly weak

connections, if any, occur between other

primary care providers and local hospitals in

areas with high cervical cancer mortality.

Moreover, these services may be geographically

distant from each other and from patients living

in rural areas. As a result, established procedures

for rapidly referring women who have abnormal

Pap tests may not be in place. In such

situations, women may become lost in or drop

out of the system and not receive the

diagnostic, follow-up, or treatment services they

19
need. In addition, it is sometimes unclear

whether the primary care center or an

oncologist should manage the care of women

with advanced cervical cancer.

Currently 50 states, 4 U.S. territories, 13

American Indian/Alaska Native organizations,

and the District of Columbia have elected to

participate in the Breast and Cervical Cancer

Mortality Prevention Act of 1990.61 In 2000,

Congress passed the Breast and Cervical Cancer

Treatment and Prevention Act to help make

treatment services more accessible to women

enrolled in the National Breast and Cervical

Cancer Early Detection Program (NBCCEDP). As

of January 1, 2005, 49 states and the District of

Columbia have received approved Medicaid

amendments to participate in this program.

Under it, states extend Medicaid coverage to

women whose cervical abnormality is detected

through the CDC’s NBCCEDP. The Federal medical assistance percentage (FMAP) rate covers 65

to 85 percent of the cost of treatment, with state

Medicaid dollars covering the remainder. While

an important step in linking screening with

care, the early detection program covers only 12

to 15 percent of eligible women (usually women

with family incomes 250 percent or less of the

Federal poverty threshold).62

Disconnects between primary care,

screening, and treatment often are compounded

by transportation/distance from care, payment

and childcare issues, and lack of understanding

by patients of the need to pursue follow-up care

in the event of an abnormal Pap test. Difficulty

in navigating the health system appears to be a

major barrier. Eliminating these disconnects for

both physicians and patients was seen as a

crucial step in improving care for women with

cervical abnormalities and other health

conditions for which continuity of care is

essential. The need to coordinate federally

funded medical and social services in rural areas

was emphasized repeatedly.

The HRSA, NCI, and CDC pilot Health

Disparities Collaboratives are addressing many

of these issues in a pilot project being

conducted in several HRSA centers. Among the

goals of this project is a plan to perform Pap

tests on 90 percent of female primary care

patients, with test result notification within 30

days. Follow-up colposcopy is provided for

women needing further evaluation; the program

seeks to perform at least 80 percent of necessary

follow-up procedures within 90 days. For

women diagnosed with early cervical cancer, the

goal is to have treatment begin within 90 days

of diagnosis. The program is being documented

and evaluated to determine if it can be

expanded to the entire network of HRSA primary care clinics. A description of these cancer

health disparities collaboratives can be found at

the Web site: http://healthdisparities.net.

3. Reaching Women Who Have Rarely or Never

Been Screened for Cervical Cancer and Other

Diseases

To reduce cervical cancer mortality, it is critical

to reach rarely or never screened women, since

half of all invasive cervical cancer cases are

found in women either who have not received a

Pap test in the previous five years or who have

never had a Pap test.63,64

20
21

The CDC NBCCEDP was an important step

in attempting to reach more low-income

women with breast and cervical cancer

screening, particularly those in rural areas. On

average, however, the NBCCEDP sites reach only

15 percent of eligible low-income women, and it

appears that some programs may be screening

some women more frequently than is necessary.

ACS and USPSTF guidelines recommend Pap

tests every three years for women with previous

normal test results; the NBCCEDP screens all

women annually. Some CDC program sites have

been more successful in reaching eligible

women than others. CDC is conducting

evaluations to determine why these programs

are succeeding and how contributing

procedures, activities, and other factors can be

incorporated to strengthen performance at other

program sites.

Greater numbers of outreach workers are

needed, both in the CDC screening programs

and in other community health programs, to

locate rarely or never-screened women and

facilitate their entry into screening programs.

Outreach workers are particularly needed in

rural areas, especially in counties with limited or

no county health services. Such workers,

typically members of the community who

receive training to fulfill this role, are sometimes

referred to as lay educators, community health

advisors, community health representatives,

promotoras, navigators, or by other titles. They

are key players in attracting high-risk women

into the health care system through culturally

appropriate education, lay counseling, and other

interventions. These workers also may arrange

medical appointments, accompany women to

screening and follow-up appointments, and

help with transportation and childcare needs.

CCMP participants suggested that outreach

and screening be expanded to include

emergency rooms, other providers of women’s

health services, and work sites. To the extent

possible, the number of mobile units providing

screening, follow-up, and at least limited

treatment services should be increased. In

addition, screening services should be made

available in the evening and on weekends. Free

screening could be provided to groups with

limited health care access, such as migrant

health workers and the poor. CCMP participants

reported that, for example, a pilot program in

Santa Clara County, CA, is reaching out through

media and other communication channels to

hard-to-reach Asian women, many of whom are

relatively recent immigrants, to provide Pap

tests at a free clinic. The screening program also

is proving successful as a way to draw women

into the system for the care of other health

problems. However, when cancer is diagnosed,

unless a woman is Medicaid eligible, the

program currently faces the same lack of referral

resources as HRSA clinics. 

In another pilot effort reported by the

CCMP participants, NCI, CDC, the American

Cancer Society, the Centers for Medicare and

Medicaid Services (CMS), and the Department of

Agriculture Extension Service are testing the

benefit of using Extension Service workers to

reach rural women in eight states with evidencebased breast and cervical cancer screening

promotion program materials.
Some of the actions proposed by CCMP

participants may require supportive policy,

modified programs, and funding. For example,

they recommended that lay health workers,

many of whom are volunteers, should be paid,

particularly when they are fulfilling a role the

physician is unable to undertake due to time

constraints. Moreover, to sustain the effort, such

workers should become part of an institution’s

economic infrastructure rather than being

supported by grant funding. CMS representatives

indicated that Medicaid currently can provide

matching funds for community health advisors

if the state requests a Section 1115 waiver.

Section 1115 of the Social Security Act permits

authorization of experimental, pilot, or

demonstration projects that the Secretary, HHS,

deems likely to assist in promoting the objectives

of the Medicaid statute.65

Medicaid also provides funding through

disease management organizations (DMOs) that

could provide an option for supporting this type

of staffing within a system demonstration

project in a specific community. While cancer

currently is not one of the diseases specified for

this type of funding, it was suggested that NCI

work with CMS leadership to include cancer in

the categories of disease supported via this

mechanism.

Some CCMP participants, however,

maintained that further research is needed to

confirm the efficacy of the community health

advisor role.

In addition, the recently revised cervical

cancer screening guidelines66 may enable

NBCCEDP and other program resources to be

redirected to outreach activities and staffing.

The American Cancer Society recommends:

1. Cervical cancer screening should begin

approximately three years after a woman

begins having vaginal intercourse or no later

than by the time she is 21 years of age.

2. Cervical screening should be done annually

with regular Pap tests or every two years

using liquid-based tests. At or after age 30,

women who have had three normal test

results in a row may get screened every two

to three years. But the doctor may suggest

getting the test more often if a woman has

certain risk factors such as HIV infection, a

weak immune system, or multiple partners.

3. Women 70 years of age and older who have

had three or more normal Pap tests and no

abnormal Pap tests in the last 10 years may

choose to stop cervical cancer screening.

4. Screening after total hysterectomy (with

removal of the cervix) is not necessary unless

the surgery was done as a treatment for

cervical cancer or precancer. Women who

have had a hysterectomy without removal of

the cervix should continue cervical cancer

screening at least until age 70.

Primary care physicians and other

providers also play a vital role in reaching rarely

or never-screened women. These providers need

to be encouraged to ask women patients about

screening history, provide cancer education, and

perform screening when indicated on women

who have come in for other reasons. For this

strategy to be successful, particularly with

22
providers who must see 50 to 60 patients daily,

reimbursement would have to be available for

such “opportunistic” screening (see also

Improving Coverage and Reimbursements, on

page 24).

4. Providing Patient Navigators to Help Women

Through the Health System Once an Abnormality

Has Been Detected

Some women who are screened and found to

have an abnormality never receive follow-up

diagnostic and treatment services because they

are fearful or ashamed of a possible diagnosis,

have no telephone or fixed address (e.g.,

homeless or migrant women), or do not

understand the meaning of the test result and

the need for additional care. Some patients do

not follow up on abnormal test results because

they lack transportation or child care needed to

attend medical appointments. For all of these

reasons, culturally competent patient navigators

or case managers are needed to ensure that

women enter the health system and receive the

guidance and assistance needed to receive

necessary treatment.

Patient navigators typically assist women

with scheduling and keeping appointments;

explain medical terminology and the

importance of treatment; and help women

obtain financial, medical, transportation, child

care, and other assistance they may need. It is

essential that navigators be highly

knowledgeable about the local health and

supportive care systems and resources to fulfill

this role. A number of such programs, tailored

to local needs, already are under way or planned

in communities across the country. One such

program now operating in nine sites (though

not limited to cervical cancer) is sponsored by

CRCHD. http://healthdisparities.net.

The need for navigators was considered a

high priority by CCMP participants. Funding to

support them could come from Federal, state, or

local sources. A representative from CMS

indicated that Medicaid can pay for case

management (patient navigator) services

through the 1115 waiver mechanism as well as

in conjunction with “hybrid” proposals for

expanded Medicaid coverage.

For patient navigators to be optimally

effective, an infrastructure needs to be in place.

Physicians must be up to date on screening and

treatment guidelines, and patient reminder and

tracking systems must be in place to ensure that

patients are offered information and receive all

of the services needed in a timely manner.

Similarly, patient navigator programs should

include an evaluation component to ensure that

the program is effective. As with Community

Health Advisors, further research on the costs

and benefits of patient navigator programs was

urged.

5. Increasing the Number of Providers of the

Patient’s Gender/Race/Ethnicity 

Modesty, distrust, and cultural taboos may cause

women in high cervical cancer mortality areas

to avoid screening and follow-up care if only

male physicians are available to conduct the

examination. Increasing the number of female

providers, particularly providers of the patient’s

race/ethnicity, is an essential step in breaking

down resistance to screening and saving

23
women’s lives. African Americans,

Hispanics/Latinos, and Native Americans

together account for approximately 21 percent

of the U.S. population, but only 8.6 percent of

physicians.67 The proportion of women

physicians in these groups is even lower. While

increasing the number of women physicians

from these racial-ethnic groups is an important

long-term strategy, CCMP participants also

urged the training of nurses and other health

care providers to perform Pap tests and

colposcopy. Women in the above-listed racialethnic groups are much better represented

among nurses and other types of providers,

making this a more feasible short-term strategy.

National support to achieve this objective could

include national training programs and

scholarships, National Health Service Corps

(NHSC) placements, and provider incentives.

6. Improving Coverage and Reimbursements 

Coverage and reimbursement issues permeated

the discussions of access to cervical cancer

screening and treatment. Physicians are

reducing the number of new Medicare and

Medicaid patients they accept because of low

reimbursements, and reduced reimbursement

rates are straining the budgets of publicly

funded health centers that count on Medicare

and Medicaid programs for major portions of

total patient care revenues. Reimbursement is

needed to specifically encourage primary care

and other providers to ask about Pap screening

history, provide cervical cancer education, and

perform screening when indicated on women

who have come in for other reasons.

Unfortunately, categorical funding grants often

constrain providers’ ability to provide multiple

services during a single medical encounter.

CCMP participants assigned a high priority

to the suggestion that over a 10-year period, the

CDC National Breast and Cervical Cancer Early

Detection Program and Treatment Act should be

fully funded to provide 100 percent coverage of

eligible women, including patient navigator

services. In addition, it was recommended that

Medicaid or Medicare coverage for at least one

year should be provided to any uninsured or

underinsured woman (living in poverty) with

cervical cancer whose disease was not detected

through the NBCCEDP.

According to a CMS representative, a

woman who receives cancer treatment through

Medicaid remains eligible for necessary followup care and additional treatment as long as she

has no other insurance coverage, is under age

65, and continues to require treatment. If a

patient reaches age 65 after her initial course of

treatment is complete, she will be dropped from

the Medicaid rolls. Older women who are not

eligible for Medicare (e.g., recent immigrants)

but later need additional treatment currently

must find another source of payment.

Paperwork related to federally funded

programs should be easy to read and complete,

and be streamlined to encourage provider

participation. Recent legislation68 includes a

provision to help increase and equalize

reimbursements between urban and rural areas.

This, however, may not be sufficient to

overcome rural payment issues.

24
7. Improving Telemedicine and Multidisciplinary

Consultations

Multidisciplinary consultation prior to cancer

treatment selection is considered a key element

in optimal cancer care, but this option currently

is unavailable to most women in high cervical

cancer mortality areas. Telemedicine may

provide a means of bringing review of

diagnostic test results and treatment

recommendations to areas without cancer

specialists. CMS currently provides

reimbursement for these services.

Information and Communication

Current efforts at information dissemination

and communication about cervical cancer risk,

screening, and treatment are not reaching highrisk populations effectively. Possible strategies in

seven (7) key areas have potential to improve

information outreach both to patients and to

health professionals:

1. Improving Awareness and Knowledge Levels

About Cervical, Breast, Colorectal Cancer and

Other Screenable/Treatable Disease Mortality

The Institute of Medicine (IOM) has

underscored the need for patient education

programs to increase patients’ knowledge of

how to access care and participate in treatment

decisions.69 A second Institute report in 200370

reiterated the need for public and private

organizations to work to improve the public’s

understanding of cancer prevention and early

detection and their importance for reducing

cancer mortality. CCMP participants suggested

that public and private agencies develop and

implement a cervical cancer awareness and

education media campaign that would be

funded nationally but implemented regionally

so that it could be tailored to high-risk

populations and geographic areas. In addition to

providing information about cervical cancer, its

prevention and treatment, and available

services, a key focus of these campaigns would

be to raise public awareness of the longstanding

disparities in cervical cancer mortality and to

motivate action.

2. Developing and Providing Linguistically and

Culturally Appropriate Information 

The Federal Government established standards

for Culturally and Linguistically Appropriate

Services (CLAS) in health care in recognition of

the impact of limited English proficiency and

linguistic isolation on health disparities. The

proportion of linguistically isolated households

(i.e., in which no person over 14 years old in

the household can communicate in English)

remained at approximately 5 percent of all U.S.

households for the past decade. However, in

addition to the traditional destination states of

many immigrants (e.g., California, Texas, New

York), some states have seen dramatic increases

in this population (e.g., 10 percent of Asian

households in Kentucky, 18.6 percent of

Spanish-speaking households in North

Carolina).71

It is therefore essential to address both

health literacy and overall literacy issues that

affect communication with populations at high

risk of death from cervical cancer, including

both native- and foreign-born individuals.

25
26

Native-born populations in high cervical cancer

mortality areas tend to have limited educational

attainment and require materials written at a

level that matches their reading levels. For

Asian, Hispanic/Latina, and other immigrant

populations with high rates of cervical cancer

incidence and mortality, materials must address

not only limited or complete lack of literacy in

English but also, in many cases, limited literacy

in their native language. Low literacy among

women of all races and ethnicities has been

shown to be directly linked to lower cervical

cancer screening knowledge.72 Materials

designed for visual learners (e.g., pictographs)

and the oral transfer of information (e.g.,

videos, story telling, talking circles) are needed

to reach women at all levels of literacy with

essential information on cervical cancer

prevention and treatment. Few such materials

are available and more need to be developed.

Educational materials must be both

understandable and culturally appropriate. The

continuing inflow of immigrants from

numerous countries, the diverse cultures that

exist even among immigrants from the same

nation, and the regional cultural differences

among native-born women create a massive

challenge to meeting their information needs.

Experience with Native American populations,

for example, indicates that materials developed

locally or regionally for specific populations

often are the most effective, but this approach is

costly and time consuming. Regional efforts

can, however, be supported at the national level.

The Native CIRCLE (Cancer Information

Resources Center and Learning Exchange)

program, cosponsored by NCI and the Mayo

Comprehensive Cancer Center, stimulates local

development of cancer education materials for

diverse Native American and Alaska Native

audiences. It has developed materials with

Native American themes that have proven

useful for a number of tribes or have been

adapted to reflect specific Native cultures

(http://mayoresearch.mayo.edu/mayo/

research/cancercenter/native.cfm). Similarly,

an NCI-supported study demonstrated that

culturally and linguistically tailored educational

materials increased cervical cancer screening

among Chinese American women in Seattle.73

Evaluation of these programs is ongoing to

determine their efficacy in reaching specific

groups of women.

Translation needs are another critical

component of information services for women

at high risk of cervical cancer mortality. Literal

translations often do not increase the readability

and comprehension levels. Among others, the

IOM74 has noted that unaddressed language

barriers can affect the delivery of adequate

health care due to poor information exchange,

misunderstanding of physician instructions,

inadequate shared decision-making, loss of

important cultural information, or ethical

compromises. In addition, language barriers can

negatively affect adherence to medication

regimes, appointment attendance, and patient

satisfaction. However, due to the lack of

translators in the variety of languages required,

particularly translators who are sufficiently

familiar with medical terminology to translate

information about treatments and procedures

with accuracy, health care providers in many

areas must rely on family members, including
children, or persons who are strangers to the

patient to provide translation services.

Innovative approaches to developing

interpreter networks tailored to the populations

in a given geographic location are sorely

needed. NCI recently has begun a shift from

translation of cancer education materials to

“trans-creation,” which often renders a different

but more culturally appropriate framing of

information.

Of note, the California legislature passed

SB 853, Culturally and Linguistically

Appropriate Services Bill, in 2003.75 This bill

requires the Department of Managed Health

Care to adopt, not later than January 1, 2006,

regulations establishing standards and

requirements to provide health care service plan

enrollees with access to language assistance in

obtaining health care services. The regulations

would require standard and specialized health

care service plans to implement programs to

assess enrollee needs, to provide translation and

interpretation for medical services and

translation of vital documents to enrollees, and

to report to the Department regarding internal

policies and procedures related to cultural

appropriateness. The bill requires the regulations

to determine that a health care service plan is

compliant with requirements if it meets the

same or similar standards imposed by the MediCal program.

Opponents of the bill fear that interpreter

costs could exceed provider reimbursements

under the state’s Medicaid plan, causing

physicians to cease providing services to this

largely underserved population. However,

according to one review of funding options for

language services and examples from the field,76

all states can obtain a 50 percent Federal match

for language services provided to Medicaid and

State Child Health Insurance Program (SCHIP)

recipients, or a greater percentage if language

assistance is adopted as a covered service under

the state health plan.

3. Enhancing Health Professional Education

The literature shows that systems, including

reminder systems and patient tracking with

feedback to physicians, are far more effective

(than Continuing Medical Education [CME] or

other educational or information) to ensure that

physicians provide preventive services. Some

evidence also suggests that systems can be set

up to promote culturally appropriate care and

that these are more effective than individualbased education efforts. Participants emphasized

the need to educate practicing physicians and

those still in training in the following highpriority areas: (1) encouraging physicians to

review screening history and advise women, including Medicare beneficiaries, about screening

at each medical encounter, (2) communicating

the importance of Pap test screening to women

seeking treatment for sexually transmitted

diseases, and (3) ensuring culturally competent

care in cervical cancer primary, secondary, and

tertiary prevention and treatment. With regard

to cultural competency, the American Medical

Association has produced a video and

accompanying workbook for use by physicians

to sensitize them to the importance of 

27
accommodating cultural differences when

providing care.77 In addition, a recent study

suggests that physicians in health centers need

assistance in recognizing and accommodating

patients with limited literacy to ensure the

transfer of cervical cancer-related information.78

Participants cited the need for unambiguous

and simply stated guidelines on cervical cancer

screening, abnormal cytology, and treatment.

Efforts are needed to improve providers’

knowledge about screening and follow-up

guidelines and about how to take advantage of

opportunities to discuss screening when patients

come in for other reasons. In California, for

example, a short CME course targeting

Vietnamese physicians was highly successful in

raising their awareness and knowledge about

cervical cancer and screening and follow-up

guidelines. The Health Disparities Collaboratives

are working to enhance provider knowledge in

these areas and to coach health center providers

on how best to provide these services to diverse

populations. Training also is being provided on

cultural competence, and retraining to

accommodate staff turnover is being addressed.

Further, providers are being trained to use a

cancer registry system, the Patient Electronic

Care System (PECS), that should assist them in

monitoring patient progress.

Funding is needed for scholarships to

increase the number of female and minority

health providers, including physicians and other

facilitators, serving underserved populations.

Training funds also are needed for training

community health advisors, case managers, and

patient navigators.

4. Enhancing Provider-Patient Communication

Communication between patient and provider

was identified as an area needing substantial

improvement. For example, reminder systems

are needed to help inform both patients and

providers when screening and follow-up care is

due. CHC and other programs currently are

experimenting with different types of reminder

systems.

The care model being implemented in the

HRSA/NCI/CDC cancer control Health

Disparities Collaborative pilot centers includes

provider-patient shared decision-making. Under

this model, the provider is to assess and ask the

patient about her conviction to continue

screening, identify barriers to screening, and

inform the patient about screening and

followup. The information is to be tailored to

address identified barriers, and a written plan

for screening and followup is to be provided to

the patient before she leaves the provider’s

office. Tools to assist providers in this

communication are being designed and tested.

In addition, patients are to be given selfmanagement worksheets that help them keep

track of when they are due for screening and

other care.

5. Using Lay Health Workers to Increase

Population Awareness of the Importance of

Screening

Volunteer and paid lay health workers are a

crucial component of the cervical cancer

education network. These workers, drawn from

the community, have credibility and a trust

relationship with patients that may take

28
physicians weeks or months to cultivate. Unlike

most physicians, these workers also have the

time to explain information in detail and to

meet with target-population women in familiar

settings including churches, health fairs, other

community events, and women’s homes.

Geographic areas with high cervical cancer

mortality are populated primarily by marginalized populations with high rates of diabetes

and other health problems. Educational

program funding for these conditions is scarce;

some participants felt that additional evidence

may be needed to persuade local resource

allocators to fund lay health worker programs

targeting cervical cancer.

6. Providing a Central Resource for Cervical

Cancer and Other Disease Information and

Intervention Strategies

A national cervical cancer Web site was

suggested that would link national organizations and their informational and other

resources so that states and localities could

easily obtain publications and materials. Native

CIRCLE helps to disseminate cancer education

materials for American Indian and Alaska Native

populations but does not reach all populations

with high cervical cancer mortality. NCI, in

collaboration with CDC, the Substance Abuse

and Mental Health Services Administration

(SAMHSA), and the American Cancer Society

(ACS), has launched Cancer Control PLANET

(Plan, Link, Act, Network with Evidence-based

Tools, http://cancercontrolplanet.cancer.gov)

to assemble in one place information on

evidence-based interventions and tools that can

be downloaded by provider organizations and

used in or adapted to varied care settings. If this

or a similar Web site were established as a

clearinghouse to include cervical cancer control

programs along with other evidence-based

cancer control programs, targeted efforts would

be needed to make state and local health

administrative and provider organizations,

voluntary and advocacy organizations, and the

private provider network aware of this resource.

7. Improving Medical Records Maintenance and

Retrieval Systems 

Improved medical records maintenance and

retrieval systems were cited as important for

retaining patients in the health system, helping

providers to rapidly access and review patients’

medical information, and reducing cost by

eliminating the need for repeat procedures.

Critical to the success of using medical records

to improve services is regular and compassionate feedback to physicians. As advances in

information technology become more widely

used by providers, monitoring of the impact of

these technologies on health disparities will be

needed.

Collaborations, Partnerships, and Advocacy

To reduce health system fragmentation, improve

continuity and quality of care, and make the

most efficient use of available resources,

expanded, new, and innovative collaborations

and partnerships are needed among national,

regional, and local providers and other

stakeholders. In addition, increased advocacy

concerning cervical cancer is needed.

29
30

1. Establishing and Strengthening Partnerships

That Promote a “Whole Woman” Approach to

Care

It was proposed that all government programs,

including non-DHHS agencies such as the

Department of Veterans Affairs (VA), the

Department of Defense (DoD) health system,

and state and local programs with an interest in

and resources devoted to women’s health

establish partnerships to promote a “whole

woman” approach to care, possibly as a national

women’s health initiative through which

services related to cervical cancer could be

integrated. Such an approach dovetails with the

expressed need for women who depend on

publicly funded health programs to have a 

“medical home”—a usual source of

comprehensive medical care.

Through grants, the DHHS Office of

Women’s Health has established a number of

Centers of Excellence that provide models for

comprehensive women’s health services based

both at community centers and at academic

medical centers (http://www.4woman.gov/

owh/CCOE/).

2. Providing and Sustaining Funding for

Coalitions, Partnerships, and Community-Based

Quality Services

The CHCs offer a logical starting point from

which to build a system of comprehensive care

for many of the women in areas with high

cervical cancer mortality. Any such linked

system of services must be adequately funded

and tailored to the cultures and other

characteristics of local populations.

In addition to its health centers, HRSA

supports two mechanisms that have significant

potential to facilitate health system

partnerships. One of these, the communitycontrolled state primary care associations,

provides a locus for contacting and

collaborating with primary care resources in the

state. The second, primary care offices, usually

are housed within the state health department;

their role is to try to bring together the diverse

categorical and other programs at the state level

to coordinate and improve primary care delivery

for the underserved. Most do not have the

leverage to resolve issues concerning flexibility

in the use of categorical funds, but they can

facilitate bringing such issues to the attention of

the public health commissioner or state

governor.

Other potentially productive partnership

activities were suggested. State and local

partnerships might include community

coalitions to identify barriers to screening and

treatment among unscreened or rarely screened

populations; information collected could be

used to improve access and the cultural

sensitivity of all cervical cancer services. These

coalitions also could mobilize local leadership

from a variety of local institutions (e.g.,

academic, medical, community-based

organizations, the faith community, educators,

commerce, and the general public) toward the

common goal of reducing cervical cancer

mortality. In addition to the existing HRSA

primary care centers in public housing projects,

partnership with the Department of Housing

and Urban Development (HUD) was suggested

as a way of reaching women who live in
subsidized housing units. Partnerships with

community-based agencies working with

specific populations (e.g., foreign-born women)

in which trust relationships already are

established can provide a crucial bridge to bring

women into established screening programs.

The Cancer Control Collaborative includes

educational sessions designed to inform

providers and administrators about screening

and followup for certain cancers. The program

promotes local partnerships to improve the

comprehensiveness and quality of care and to

provide a forum for disseminating information

about program successes and challenges.

3. Strengthening Advocacy for Cervical Cancer

Currently, advocacy for cervical cancer is

limited, in part because of its association with

sexual behavior and the small number of cases

relative to certain other cancers (e.g., lung,

colorectal, breast). It was suggested that NCI

identify a core group of cervical cancer survivors

who could spearhead advocacy for the disease,

communicate to decision-makers a sense of

urgency about the disease (e.g., cervical cancer is

preventable and no American woman should

ever die from it), and work to dispel the stigma

associated with cervical cancer as a sexually

transmitted disease. In fact, a number of

advocacy groups with an interest in cervical

cancer already exist: examples include the

National Cervical Cancer Coalition, the

Intercultural Cancer Council, and the National

Council of La Raza Institute for Hispanic

Health.79 Such organizations could form the

nucleus of a collaborative and coordinated

national advocacy effort.

Local or regional advocacy networks could

be formed in high mortality areas. These

advocates could identify state and tribal leaders

with an interest in cervical cancer to explore the

possibility of regional and tribal coalitions to

address cervical cancer mortality, as described

above. To help develop a cadre of effective

advocates, a national funding source might be

established to support cervical cancer advocacy

activities and training at the local level and to

develop tool kits for use by local advocacy

organizations.

Issues identified by the CCMP as ripe for

advocate intervention included: (1) insurance

coverage issues, such as proposing legislation to

fund treatment of all uninsured and underinsured women diagnosed with cervical cancer,

not limited to the NBCCEDP and Treatment Act;

(2) ensuring that cervical cancer is addressed in

existing and developing state cancer control

plans; and (3) advocating for cancer control

plans in states where they do not yet exist.

Research Needs

Clearly, our understanding of the natural history

of cervical cancer in underserved areas of the

U.S. remains incomplete. Information is lacking

on the characteristics of at-risk women (and

their families) and the health care environments

in geographic areas with high cervical cancer

mortality. More detailed geographic information

is needed. Targeted studies and data samples are

needed to study the effects of SES, race, and

culture on health and disease outcomes in

specific populations and environments. In

31
addition, a better understanding of local populations is required to ascertain the influence on

cervical cancer mortality of insurance status,

transportation, lack of medical infrastructure,

HPV prevalence, smoking, sexual practices,

condom use, micronutrients, social and mental

health support, and other factors. This information is needed to ascertain the effect of riskfactor reduction on incidence, morbidity, and

mortality. Similarly, without adequate data it is

difficult to determine with certainty what infrastructure exists or is needed to help alleviate the

problem (e.g., number and type of health care

professionals, transportation systems). Finally,

detailed data systems, especially in the poorest

parts of the U.S. such as Appalachia and the

Deep South, are needed to evaluate the success

of programs and interventions.

The Common Scientific Outline

(http://researchportfolio.cancer.gov/cso.html)

adopted by NCI, DOD, ACS, and other public

and private research funding agencies offers the

ability to reduce redundancy in research

activities and identify research gaps.

Recognizing these areas of need, the CCMP

participants identified six (6) key research

emphases:

1. Community-Based Research

The importance of finding local solutions to

local problems was a recurrent theme

throughout the CCMP discussions, and the

need for community-based and communityinvolved research was emphasized. Addressing

this need will require enhancements to

community-oriented research infrastructure.

The NCI-supported Special Populations

Networks and its follow-on, the Community

Networks, represent one effort to meet this

need. In addition, research training is needed

to facilitate community members’ participation

in research design and implementation. Cervical

cancer survivors also can provide valuable

insight into research project and intervention

design. The process of Community-Based

Participatory Research (CBPR) is well described

by the Agency for Healthcare Research and

Quality (AHRQ) at the Web site: http://www.

ahrq.gov/research/cbprrole.htm.

2. HPV Testing and Vaccine Research

Several areas of need in HPV-related research

were enumerated. Those related to screening

included:

• Determining the optimal frequency and role

of HPV testing (i.e., as a Pap test followup or

primary screen).

• Determining the relationship and patterns, if

any, of HPV prevalence by age in high

mortality areas.

• Assessing the impact of telling people they

have evidence of HPV infection.

Screening tests for HPV, which have shown

excellent sensitivity for detecting precancerous

cervical intraepithelial neoplasia (CIN) II and III

lesions, are available and are accepted by

insurers for reimbursement, usually after a Pap

test finding of ASCUS (atypical squamous cells

of undetermined significance). The combined

HPV/DNA test is now accepted for reimbursement by health plans covering approximately

32
150 million women.80 The combined test also is

covered by Medicare as a follow-up test and by

the NBCCEDP and some state Medicaid

programs as a primary screening tool.81

Continued research to develop more

affordable and effective HPV tests will almost

certainly continue. The feasibility of HPV selfscreening should be further explored. Analyses

of the cost effectiveness of routine HPV testing

should proceed as this may prove to be more

cost effective than the usual two repeat Pap tests

now recommended following an abnormal Pap

test. For many health agencies, getting women

to return for the two additional tests can be the

most expensive aspect of screening. These costbenefit analyses will need to be conducted.

As noted, a preventive vaccine against

HPV–16 has been tested in a double-blind trial

and found to be effective in preventing

infection and CIN. NCI recently initiated a

Phase 3 HPV–16 prevention trial in Costa Rica.

Routine HPV vaccination may still be a decade

away and may not fully address the problem of

undetected long-term HPV infection in women

older than age 45. Developing one or more

effective and affordable HPV preventive vaccines

is crucial to cervical cancer control. In addition,

it will be essential to conduct the research

needed to determine the vaccines’ acceptability

to at-risk populations (particularly for use in

adolescents prior to the onset of sexual activity)

and to develop and disseminate the

communication and health services

interventions that will be required to ensure

that the vaccine reaches those who need it.

Acceptability studies, it was emphasized, should

be completed well in advance of the vaccine’s

availability, so that when the vaccine is ready,

the mechanisms to deploy it rapidly and

effectively will be in place. Similarly, research

will be needed for any treatment vaccine that

may be developed in the future. The NCI

Gynecologic Cancers Progress Review Group

(PRG)82 identified the development of HPV

prophylactic and therapeutic vaccines as a

priority for the cervical cancer research agenda

because effective vaccines would reduce

dramatically the incidence of HPV infection and

HPV-related neoplasia and also significantly

reduce the cost of screening for cervical cancer.

The PRG also underscored the need for

government and industry partnership and

collaboration to speed the development of HPV

vaccines.

3. Improved Screening Technologies and

Screening Interventions

CCMP participants suggested that additional

research still is needed to develop better, but still

affordable, screening tests for cervical

abnormalities, to assess the sensitivity and

specificity of liquid cytology (e.g., Thin-PrepTM)

Pap tests, and to assess the feasibility of novel

screening and treatment strategies for hard-toreach populations. It was anticipated, however,

that better HPV testing could supplant the need

for improved Pap tests.

4. Other Social/Behavioral, Health Services, and

Intervention Research 

Experience to date relative to diverse health

conditions demonstrates that multicomponent

interventions are usually the most effective.

33
Because of the heterogeneity of populations

within racial/ethnic groups and within regions

with high cervical cancer mortality, more

detailed data is needed to better understand and

characterize subpopulations at the regional,

state, and local levels to help in determining

how best to reach them and motivate lasting

behavior change. This may include finding ways

to establish infrastructure to provide services,

link services, provide transportation,

disseminate information, and train and pay

nonphysicians to provide some services which,

in urban areas, are provided by physicians or

specialists. In addition, studies of the impact of

cultural factors on education and on screening

and treatment decision-making are needed.

Greater NCI and ACS support for applied

behavioral and social research on women’s

attitudes and knowledge is needed to inform

development of culturally sensitive interventions

to increase screening participation. Ethnographic

studies have the potential to collect textured

data with better relevance than simple

epidemiologic data. Analysis is needed based on

socioeconomic status and other social issues to

elucidate the effects of social position and

economic level on cervical cancer mortality in

identified populations. Further, it was suggested

that studies be conducted to better understand

the resilience and other characteristics that help

target-population women withstand harsh social

and environmental conditions. It may be

possible to build upon these factors to improve

access and utilization and to reduce disparities.

To date, little research has been done to justify the implementation of many interventions

or to measure their effectiveness. Community

case studies on specific issues should be

conducted before deciding which interventions

to implement. A rapid review of the existing

literature on lay health advisors was suggested

as were studies to collect further evidence on

the efficacy and cost effectiveness of lay health

advisors and patient navigators. NCI and CDC

were urged to fund pilot studies of successes

from one program or geographic area in other

locations to identify interventions that are

effective across regions. Moreover, successes in

outreach to hard-to-reach populations

concerning other diseases (e.g., heart disease,

diabetes) should be evaluated to determine how

these successes could be applied to cervical

cancer outreach and other interventions. AHRQ,

through its Primary Care Practice-Based

Networks and Center for Outcome and

Effectiveness Studies, can be of assistance in

carrying out or partnering with NCI or other

Federal agencies to conduct such studies.

Little information is available, either

nationally or related to specific populations

(particularly in areas where there is little or no

choice of treatment provider), on cervical cancer

treatment patterns and patient management,

including treatment of recurrences and end-oflife care. These areas require further study.

5. Follow-Back Studies

Follow-back studies typically examine patient

records, conduct interviews (if possible), and

evaluate the health system experience and

disease outcomes of the patient. Such studies are

invaluable for understanding failures of cervical

34
cancer screening, diagnosis, and treatment, but

also are instructive regarding health care system

gaps overall. A limited number of such studies

have been conducted relative to cervical cancer;

these suggest that most cervical cancer cases

occur in women who have never been screened

or whose last test was three or more years prior

to diagnosis. Among recently screened women,

new cases often have been found to result from

false-negative screening results,83,84,85 while among

women with positive screening tests, cases more

often resulted from incomplete diagnostic

evaluation.86,87,88 Women with lower SES, no

insurance, or other financial barriers, and older

women are more likely to have less timely or

incomplete followup of abnormalities.89

CCMP participants maintained that additional follow-back studies are needed that focus

on women with advanced cervical cancer in

high mortality regions or those who have died

from the disease. The objective should be to

determine where and why lapses in patient

screening, education, treatment, supportive

services, and followup are occurring. These

studies will inform the development of tailored

interventions to address identified gaps across

the continuum of care. The studies should

include comparison groups, and risk factors

should be defined. Studies either should be

conducted regionally, or results should be

reported by region.

6. Data Collection and Surveillance

Participants suggested that NCI and CDC jointly

fund rapid case ascertainment of cervical cancer

cases using SEER and NPCR registries targeting

high mortality geographic areas and populations.

Multidisciplinary teams and community

representatives would then be needed to design

effective survey tools to help identify barriers to

services experienced by target-group women. In

addition, it was felt that collecting patient

narratives is important to illuminate the

qualitative aspects of cases, combining moving

personal stories with compelling data

presentations to motivate action by policymakers, funders, advocates, other community

stakeholders, and target populations.

Other suggested data enhancements and

refinements included:

• Adding standard data elements to cancer

registries on precancerous lesions, cervical

pathology, and hospital discharges.

• Improving data on treatment patterns,

including treatment of recurrences and

palliative care.

• Developing uniform data sets for patient

navigation.

• Establishing uniform data sets on SES,

education, and Pap test history.

• Conducting data analyses by SES in addition

to, or instead of, race/ethnicity.

• Enhancing cancer maps to distinguish

mortality rates among racial/ethnic groups,

specifically separating data for white Hispanic

women from white non-Hispanic women.

• Improving data collection at the local level to

permit small-area analysis and comparison of

the mortality risk of heterogeneous local

populations with national data.

35
36

• Making cervical cancer, and perhaps even

carcinoma in situ or severe dysplasia, reportable

diseases.

Conclusions

The Center to Reduce Cancer Health Disparities

believes that the nation’s public health care

system can do a better job of delivering cervical

cancer and related health care to women who

need these services, and has reached the

following five conclusions.

1. Cervical Cancer Mortality Is an Avoidable

Cause of Death and a Marker for Conditions

That Contribute to Health Disparities

Cervical cancer in America is overwhelmingly a

disease of poor women with low educational

attainment who are not receiving Pap tests. In

the 1990s, U.S. women experienced at least 71

percent higher cervical cancer mortality in highpoverty counties than in low-poverty counties.

U.S. cervical cancer mortality increased with

increasing area poverty for women in all

racial/ethnic groups.90 In addition to being an

avoidable cause of death, cervical cancer

mortality is a marker for the ill health and

human suffering of women who are uninsured,

underinsured, and/or depend on publicly funded

health services. These women frequently

underutilize screening and other preventive

health services, lack a usual source of care, and

avoid the health care system or refuse needed

care that is not free because they cannot afford

it. Cultural incompatibility with available health

care providers, language and literacy problems,

childcare barriers, and distrust of government

programs and personnel exacerbate difficulties in

reaching these populations of women.

The same populations of women who are

experiencing high levels of cervical cancer

mortality also are at risk for other screenable and

treatable conditions. Data on African American

women in the Deep South (Alabama and

Mississippi) and white women in parts of

Appalachia (West Virginia and Kentucky)

illustrate this situation clearly.91 The women in

these high cervical cancer mortality areas also

experience excessive mortality from breast cancer

(Maps 6 and 10) and colorectal cancer (Maps 5

and 9) as well as heart disease (Maps 7 and 11)

and cerebrovascular disease (Maps 12 and 15),

and there is high infant mortality (Maps 13 and

16) in these regions as well. In both areas,

poverty levels are far above the national average

(Maps 14 and 17), and these populations are

characterized by lower educational attainment

levels, geographic isolation, lack of transportation, greater exposure to environmental and

occupational hazards, and poor housing.92

Although comparable data on other

diseases was not compiled for other populations

with known high cervical cancer mortality rates

(Latinas along the Texas-Mexico border,

Vietnamese Americans in central California,

Alaska Native women, and Native American

women in the Northern Plains states), their

disease patterns are believed to be substantially

similar. Targeted interventions and resources are

required to eliminate the cervical cancer

mortality disparity in these geographic areas and

among these populations.
37

Map 12. Cerebrovascular Mortality Rate: Black Female, 1969–1999 (Alabama and Mississippi) 

Autauga

Baldwin

Barbour

Bibb

Blount

Bullock

Butler

Calhoun

Chambers

Cherokee

Chilton

Choctaw

Clarke

Clay

Cleburne

Coffee

Colbert

Conecuh

Coosa

Covington

Crenshaw

Cullman

Dale

Dallas

De Kalb

Elmore

Escambia

Etowah

Fayette

Franklin

Geneva

Greene

Hale

Henry

Houston

Jackson

Jefferson

Lamar

Lauderdale

Lawrence

Lee

Limestone

Lowndes

Macon

Madison

Marengo

Marion

Marshall

Mobile

Monroe

Montgomery

Morgan

Perry

Pickens

Pike

Randolph

Russell

St. Clair

Shelby

Sumter

Talladega

Tallapoosa

Tuscaloosa

Walker

Washington

Wilcox

Winston

Adams

Alcorn

Amite

Attala

Benton

Bolivar

Calhoun

Carroll

Chickasaw

Choctaw

Claiborne

Clarke

Clay

Coahoma

Copiah

Covington

De Soto

Forrest

Franklin

George

Greene

Grenada

Hancock

Harrison

Hinds

Holmes Humphreys

Issaquena

Itawamba

Jackson

Jasper

Jefferson

Davis

Jones

Kemper

Lafayette

Lamar

Lauderdale

Lawrence

Leake

Lee

Leflore

Lincoln

Lowndes

Madison

Marion

Marshall

Monroe

Montgomery

Neshoba

Newton

Noxubee

Oktibbeha

Panola

Pearl River

Pike Perry

Pontotoc

Prentiss

Quitman

Rankin

Scott

Sharkey

Simpson

Smith

Stone

Sunflower

Tallahatchie

Tate

Tippah

Tishomingo

Tunica

Union

Walthall

Warren

Washington

Wayne

Webster

Wilkinson

Winston

Yalobusha

Yazoo

Jefferson

169.0 to 338.6 (10%)

149.9 to 168.9 (20%)

138.0 to 149.8

130.5 to 137.0

124.6 to 130.4§

112.4 to 124.5

100.0 to 112.3

 33.2 to 99.9*‡

No data

 * All races national average 70.6 per 100,000

 § Black national average 125.6 per 100,000

 ‡ White national average 84.0 per 100,000

Maps prepared from data provided by: Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov) SEER*Stat

Database: Mortality–All COD, Public-Use With County, Total U.S. (1969–1999), National Cancer Institute, DCCPS, Surveillance Research

Program. Cancer Statistics Branch. Underlying mortality data.

Map 13. Black Infant Mortality Rate, 1969–1999 (per 1,000 Births) (Alabama and Mississippi)

Adams

Alcorn

Amite

Attala

Benton

Bolivar

Calhoun

Carroll

Chickasaw

Choctaw

Claiborne

Clarke

Clay

Coahoma

Copiah

Covington

De Soto

Forrest

Franklin

George

Greene

Grenada

Hancock

Harrison

Hinds

Holmes Humphreys

Issaquena

Itawamba

Jackson

Jasper

Jefferson

Davis

Jones

Kemper

Lafayette

Lamar

Lauderdale

Lawrence

Leake

Lee

Leflore

Lincoln

Lowndes

Madison

Marion

Marshall

Monroe

Montgomery

Neshoba

Newton

Noxubee

Oktibbeha

Panola

Pearl River

Pike Perry

Pontotoc

Prentiss

Quitman

Rankin

Scott

Sharkey

Simpson

Smith

Stone

Sunflower

Tallahatchie

Tate

Tippah

Tishomingo

Tunica

Union

Walthall

Warren

Washington

Wayne

Webster

Wilkinson

Winston

Yalobusha

Yazoo

Jefferson

28.700 to 44.380

25.000 to 28.699

22.200 to 24.999§

11.980 to 22.199

 9.000 to 11.979*

 6.000 to 8.900‡

No data

Autauga

Baldwin

Barbour

Bibb

Blount

Bullock

Butler

Calhoun

Chambers

Cherokee

Chilton

Choctaw

Clarke

Clay

Cleburne

Coffee

Colbert

Conecuh

Coosa

Covington

Crenshaw

Cullman

Dale

Dallas

De Kalb

Elmore

Escambia

Etowah

Fayette

Franklin

Geneva

Greene

Hale

Henry

Houston

Jackson

Jefferson

Lamar

Lauderdale

Lawrence

Lee

Limestone

Lowndes

Macon

Madison

Marengo

Marion

Marshall

Mobile

Monroe

Montgomery

Morgan

Perry

Pickens

Pike

Randolph

Russell

St. Clair

Shelby

Sumter

Talladega

Tallapoosa

Tuscaloosa

Walker

Washington

Wilcox

Winston

 * All races national average 9.0 per 100,000

 § Black national average 22.6 per 100,000

 ‡ White national average 7.3 per 100,000
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2. Addressing Cervical Cancer Mortality

Offers an Important Opportunity to Address

the Nation’s Growing Concern About

Persistent Health Disparities 

The Administration has identified both

prevention and health disparities as areas

needing significant attention and improvement.

Increasingly, policy-makers and researchers in

the health services and health policy fields

recognize the many forces that contribute to

health disparities and the reduced use of

prevention-oriented health services.93 These

include the individual and aggregate effects of

underlying negative economic and living

conditions, health services infrastructure and

organization problems, lack of transportation

infrastructure, cultural issues, and

education/information deficits.94

Focusing on the populations at highest risk

for cervical cancer leads us to the locations

needing special attention in providing not only

cancer-related care but also comprehensive

health services to women at risk for numerous

treatable health problems. Moreover, effectively

addressing cervical cancer mortality can provide

a model for action—an opportunity to address

not only the health problems facing women

with high cervical cancer mortality but also the

full set of human circumstances that contribute

to health disparities. To make a positive impact

on the lives of underserved women, these

human conditions must be acknowledged as

part of the problem to be addressed in crafting

solutions tailored to specific localities and

populations. To the maximum extent possible,

local leaders and cancer survivors should be part

of planning teams for patient-centered

intervention, programs, and research design,

and be involved in implementation and

evaluation efforts as well.

3. Vulnerable Populations Must Be

Provided With Necessary Preventive, Acute

Care, and Disease Management Services 

With more than 44 million beneficiaries,95

Medicaid is a critical part of the safety net for

most low-income Americans, and in many states

Medicaid costs are one of the largest expenses in

the state budget. Despite efforts to slow its

growth, Medicaid costs have increased 25

percent in the past two years, and enrollment is

growing at the fastest pace in a decade.96 At least

29 states have recently proposed or enacted

Medicaid program changes to limit eligibility

and curtail services.97 Cuts also have been

proposed in many state-funded public health

service and hospital indigent/charity care

programs. The Community Health Centers

(CHCs) funded by the HHS HRSA and similar

safety-net health providers are under severe

fiscal pressure due to Medicaid and Medicare

reimbursement changes, and they are more

challenged than ever to reach and serve their

target populations, particularly in rural areas.

These providers are struggling to fulfill their

mission as they shoulder an increasing burden

of uncompensated care without commensurate

increases in their Federal funding.

The Center on Budget and Policy Priorities

reported that the President’s 2006 budget

proposes to reduce net Federal funding for

40
Medicaid by $45 billion over the next ten years

without producing any accompanying state

savings. This could result in states reducing

Medicaid coverage and benefits and thereby

adding to the number of poor Americans

without health care coverage.98

HRSA centers, however, are currently

undergoing a period of program expansion99,100

and reorganization designed to improve both the

number and location of centers in operation as

well as the scope and organization of their

services. Communities that have both high

insurance coverage and extensive CHC capacity

tend to have the best access, although the

former appears more important. Funding of

insurance coverage expansions is likely to

produce greater gains in access than if an

equivalent level of funding were invested in

CHCs. Policymakers should consider CHC

expansions as a complement to insurance

coverage expansions rather than as a

substitute.101Thus it is an especially timely

juncture for assessing how HRSA and other

federally supported programs (e.g., Centers for

Disease Control and Prevention Breast and

Cervical Cancer Screening, and the HHS Office

of Women’s Health Centers of Excellence) can

together enhance their ability to provide more

comprehensive and coordinated “whole woman”

programs of care to their target populations and

provide the critical link to tertiary services for

women with diagnosed or suspected cancer.

In 2003, Congress passed a tax cut measure

that includes $20 billion in relief for state

governments, half of which is intended to offset

escalating Medicaid costs by temporarily

increasing the Federal matching rate.102 (The

states’ use of these funds, however, has not been

documented.) Such an infusion of Federal funds

for Medicaid will not, however, solve the

question of how to provide adequate and

compassionate cancer and other health services

to those who lack the resources to participate in

the private health insurance market. Other

strategies for managing Medicaid growth are

under consideration at both Federal and state

levels. In 2005, the Senate Budget Committee

chair proposed a $14 billion reduction in

Medicaid spending over five years.103

Ways must be found to assure that

vulnerable populations, including the uninsured

working poor and others not eligible for

Medicaid and/or Medicare, receive necessary

preventive care, acute care, and disease

management services. Proposals to give states

greater latitude in designing their Medicaid

programs must include provisions to ensure that

the most vulnerable populations in each state—

whether characterized by geographic locale,

race/ethnicity/immigration status, age, educational attainment, or other characteristics—are

not abandoned. Because risk of cervical cancer is

so strongly related to other vulnerabilities,

existing cervical cancer and other health

disparities are quite likely to worsen unless the

safety-net goal is ensured.

4. Innovation, Commitment, and Creativity

Are Crucial to Finding Ways to Use Available

Resources More Efficiently and Effectively 

Change can occur if the will exists to make it

happen. To create effective patient-centered

41
health systems, it will be necessary to change

from an acute care system orientation to one

that emphasizes prevention, including changes

in the human circumstances that contribute to

health disparities. Current access barriers

(insurance, cultural, geographic), fragmentation

of care, and outreach and information

inadequacies must be eliminated. Necessary

enabling services (e.g., translation,

transportation, patient navigation) must be

added. Optimal interventions have multiple

components, but currently resources to deliver

such interventions are least available in

communities where they are needed most.

Innovation and creativity will be needed to

make the most of scarce resources both in

intervention research and in program design

and implementation.

In 2002, DHHS commissioned an Institute

of Medicine (IOM) report to identify bold ideas

for fostering rapid health system change that

would take into account serious systemic

problems including escalating costs, quality

and safety shortcomings, growing numbers of

uninsured people, racial and ethnic disparities

in access and quality of care, and workforce

shortages.104 The IOM suggested a range of

demonstration projects that could spark such

systemic change, including projects involving

community health centers, information and

communication technology infrastructure

improvements, chronic care delivery, and state

health insurance strategies. Such proposals

should be considered seriously in developing

ways to improve care for women who depend

on publicly funded health care.

5. Leadership and Partnership Are Needed

to Create Change 

Another recent IOM report105urges the Federal

Government, using certain types of Federal

health facilities as laboratories of innovation, to

provide leadership in health care quality

improvement efforts. Though CHCs are not

among the facility types specified, it is likely that

some lessons learned in other federally

supported health facilities (e.g., Indian Health

Service primary care centers) may be applicable

to CHCs, particularly those in rural areas. The

HRSA/NCI/CDC Cancer Collaboratives, which

focus specifically on CHCs, should likewise offer

lessons that could be used to improve care in

other types of federally supported health centers.

DHHS has chosen to use cancer as a model

for addressing health disparities and NCI to

facilitate, promote, and coordinate partnerships

among Federal agencies to address persistent

disparities such as the high cervical cancer

mortality rates in identified geographic regions

and populations. Though NCI provides an

impetus for action for creating change in health

care systems and improving health care quality,

no one agency or organization can effect these

changes alone. The importance of collaboration

and partnership is critical, not only among

Federal agencies, but also among state cancer

planners, health departments, and Medicaid

agencies; hospitals; other non-Federal providers;

medical societies; accreditation organizations;

advocates; community education/information

and support organizations; local business

communities; and academia. The need for

42
greatly enhanced partnerships and collaboration

at all levels and between the public and private

sectors to improve public health has been

detailed by others.106,107,108,109

Recommendations

The NCI Center to Reduce Cancer Health

Disparities recommends specific actions and

targeted interventions and resources to

eliminate the cervical cancer mortality

disparities suffered by women in several

geographic regions of the nation. These actions

are divided into four key strategy categories:

access (encompassing services, outreach, and

navigation); information and communication;

collaborations, partnerships, and advocacy; and

research. Each major objective is listed with

specific recommendations for reaching the goal.

These recommendations are summarized in

Table 1 and are closely related to the

recommendations of the Trans-HHS Cancer

Health Disparities Progress Review Group,

Making Cancer Health Disparities History

(http://www.chdprg.omhrc.gov). The

relationships are shown in Table 2.

Access—Outreach, Services, Navigation

1. Intensify outreach to women who have rarely or

never been screened for cervical, breast, or

colon cancer and other screenable/treatable

diseases.

• Funding for the CDC Breast and Cervical

Cancer Early Detection Program should

be increased sufficiently over a 5-year

period to enable all eligible women to be

screened.

• DHHS agencies should increase outreach

efforts to women who are rarely or never

screened for cervical cancer and/or have

incomes within 200 percent of the

Federal poverty level. Synergies among

local resources should be encouraged to

find new ways to reach these women

with screening and education. Funds

saved due to recent revisions in

screening guidelines should be used for

this purpose.

2. Enable women who rely on publicly funded

health services to have a “medical home”—a

usual source of health care.

• Coordinate existing HRSA-funded

Community Health Centers (CHC),

Federally Qualified Health Centers

(FQHCs), state and county health

departments, and private primary care

practices to provide a usual source of care

for all women’s health issues.

3. Provide patient navigators who help women

through the health system once an

abnormality has been detected. This would

help eliminate the disconnects between

primary care, screening services, and

followup/treatment.

• Increase patient navigator programs

established through local hospitals,

primary health centers, or other available

community resources to help women

who have an abnormal Pap test obtain

diagnostic, treatment, and supportive

services as needed.

43
44

• The DHHS Center for Medicare and

Medicaid Services (CMS) should approve

meritorious requests from states for

Section 1115 waivers and other

innovative proposals to support patient

navigator services.

• Expertise in planning and implementing

patient navigator programs should be

shared through a national conference to

facilitate development of new and

improved programs.

4. Increase the number of female providers of the

patient’s gender/race/ethnicity.

• A coordinated plan should be developed

and implemented to increase the

number of female and minority

physicians and other providers

(including nurses and other health

workers trained to perform screening

tests and colposcopy) in areas with high

cervical cancer mortality. Resources that

may be brought to this effort include

new or existing public and private

scholarship programs, HRSA’s National

Health Service Corps, and other HRSA

resources targeted to provide a diverse,

culturally competent health workforce in

medically underserved areas.

5. Improve coverage and reimbursement for

cancer-related services.

• Any uninsured woman with a cervical or

other cancer should be presumed eligible

for Medicaid or Medicare for the

duration of her treatment and prescribed

follow-up care. The allowable duration of

cancer-specific follow-up care (including

coverage of supportive services,

treatment of recurrences, and other care)

is an issue under discussion at CMS.

6. Improve the quality of care in rural areas

through telemedicine and multidisciplinary

consultations.

• The NCI should solicit proposals to bring

telemedicine services for review of

diagnostic test results and treatment

recommendations to areas with high

cervical cancer mortality. CMS currently

provides reimbursement for these

services.

Information and Communication

1. Improve awareness and knowledge about

cervical cancer and cervical cancer mortality

through the development and provision of

linguistically and culturally appropriate

information.

• Identify populations both at high risk of

death from cervical cancer and having

no or limited linguistically or culturally

appropriate information about the

disease. Working with community

members, create materials that are

appropriate for the target population.

• Public and private agencies should

collaborate to develop and implement an

awareness and education media

campaign that would be funded

nationally but implemented regionally

so that it could be tailored to high-risk

populations and geographic areas.
45

• Train and support a cadre of lay health

workers drawn from communities with

high mortality rates. Use lay health

workers to increase population awareness

of cervical cancer and the importance of

screening.

2. Improve provider-patient communication

through provider education and availability

of language translation.

• Develop and distribute tools to providers

that will be given to patients to

encourage screening, overcome barriers,

and stress the importance of followup for

abnormal findings.

• Develop and implement training

programs for providers emphasizing the

importance of (a) patient screening

history and advice, (b) communication

with patients on the importance of

screening, and (c) culturally competent

provider care.

3. Provide a central resource detailing “best

practices” for cervical and other cancers,

including evidence-based interventions.

• Create a Web site to list evidence-based

interventions and tools that can be

downloaded by provider organizations

and used in or adapted to varied care

settings. This process has begun with

development of the Cancer Control

PLANET Web site (http://CancerControl

Planet.cancer.gov).

4. Improve medical records maintenance and

retrieval systems through the use of rapidly

evolving information technology.

• Automated medical records would

provide rapid access and review of

patients’ medical information and reduce

the incidence of repeated or neglected

procedures. Develop and disseminate

information systems to remind

physicians, track patients, and provide

physicians feedback on their practice

patterns and how to improve them when

needed. The goal is to fulfill information

requirements cost effectively.

Research

1. Optimize human papillomavirus (HPV) testing

and HPV vaccine development to eliminate the

primary biologic cause of cervical cancer.

• Research should continue to develop an

effective and affordable HPV vaccine and

determine how best to ensure its

acceptability.

2. Improve screening technologies and screening

interventions to bring affordable screening to

all women.

3. Conduct other social/behavioral, health

services, and intervention research to better

understand high-risk populations and

develop interventions to improve their care.
46

• Identify through follow-back studies those

health system issues that are

contributing to cervical cancer mortality

rates in high mortality geographic areas.

• Identify improved methods of reaching

hard-to-reach populations; and provide

additional evidence on the benefits and

cost effectiveness of community health

advisors and patient navigators.

• All grants for intervention development

should be population based and include

a scientifically sound evaluation

component. Grants also should include

funding for the transition of successful

interventions to community operation

and financial self-sufficiency.

4. Improve data collection and surveillance

activities related both to quantitative and to

qualitative understanding of cervical cancer.

• Federal data collection activities should

be expanded to include information on

cancer treatment patterns, including

barriers to care, treatment of recurrences,

and end-of-life care.

Collaborations, Partnerships, and Advocacy

1. Establish and strengthen partnerships that

promote a “whole woman” approach to care.

• HHS agencies that administer or finance

cancer-related services and other chronic

disease care should strengthen existing

collaborative arrangements and establish

new partnerships at national, regional,

and local levels to create patientcentered, integrated, and coordinated

health services that will make it possible

for women who rely on publicly funded

health services to have a “medical home”

that promotes a “whole woman”

approach to their care. This would

enable all screening to be performed in a

single facility or setting.

• Linking primary care clinics to hospitalbased diagnostic and treatment services

is a crucial part of this goal.

• Policy changes should be enacted that

will allow local programs greater

flexibility in the use of Federal

categorical program funds, thereby

improving opportunities for

coordination of care and cost efficiency.

• As part of a larger national strategy,

supplemental funding from a consortium

of Federal agencies should be provided to

several community networks to reduce

cancer disparities, state health

departments, or other established

organizations in specific states or regions

of states with high cervical cancer

mortality. This funding will be used to

build in each location a consortium of

stakeholders that should include healthrelated agencies, local educators, laborrelated agencies, and employers. The

funding will also support coalition

planning and implementation of a

demonstration project in each location

to (a) improve cancer screening and
treatment and (b) better coordinate all

care provided to women at publicly

funded health facilities. The goals should

be to demonstrate both behavioral

change and substantially reduced

cervical cancer mortality within five

years. Lessons learned from such

demonstrations should be implemented

rapidly in other locations or nationally

as appropriate.

2. Develop and implement an agenda to

provide and sustain funding for coalitions,

partnerships, and community-based quality

health services, education, and prevention

programs.

• DHHS agencies that administer or

finance cervical cancer-related services

and other chronic disease care should

form a permanent, action-oriented,

problem-solving working group to

continually examine and improve the

coordination, continuity, and

effectiveness of outreach, navigation,

education/information, and treatment

services for women in areas of high

cervical cancer mortality. Input should

be solicited regularly from state and local

health systems and related agencies. The

working group should be comprised of

officials who are empowered to set

agency policy.

• Strengthen advocacy for cervical cancer,

currently in nascent stages.

47

49

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54
55

Appendix A Reducing Health Disparities in

High Cervical Cancer Mortality Regions—Phase 1

Roundtable Agenda

Holiday Inn Emerald Beach

Corpus Christi, TX 

November 28–30, 2001

Wednesday, November 28, 2001

8:00 a.m.–8:15 a.m. Welcome and Overview

Harold Freeman

8:15 a.m.–8:30 a.m. Update of Surveillance Evidence Review Process

Jon Kerner 

8:30 a.m.–9:00 a.m. Review/Update Incidence and Mortality Data

Susan Devesa (10 min) and Carol Kosary (10 min) (NCI)

Irene Hall (10 min) (CDC)

9:00 a.m.–9:15 a.m. Literature Review Findings on Incidence and Mortality

Jeanne Mandleblatt and Robin Yabroff (Georgetown)

9:15 a.m.–9:45 a.m. Discussion

10:00 a.m.–10:35 a.m. Review/Update Stage of Disease at Diagnosis and Screening Data

Irene Hall (10 min) (CDC)

K. “Vish” Viswanath or Nancy Breen (25 min) (NCI) 

10:35 a.m.–10:50 a.m. Literature Review Findings on Stage of Disease at Diagnosis and

Screening

Jeanne Mandleblatt and Robin Yabroff (Georgetown)

10:50 a.m.–11:15 a.m. Discussion
56

11:15 a.m.–11:45 a.m. Review/Update Treatment Data

Susan DesHarnais (10 min) (ACoS)

Robin Yabroff (10 min) (Georgetown)

Ted Trimble (10 min) (NCI)

11:45 a.m.–12:00 p.m. Literature Review Findings on Treatment

Jeanne Mandleblatt and Robin Yabrof (Georgetown University)

12:00 p.m.–12:30 p.m. Discussion

ll Given, Michigan State University

Topic: Cervical Cancer Treatment Among Women Insured by

Medicaid

1:30 p.m.–2:15 p.m. Overview of Concept Mapping and Review the Map 

Mary Kane and Dan McLinden

2:15 p.m.–2:45 p.m. Concept Mapping Group Exercise I (Grouped by Table) 

Mary Kane and Dan McLinden

3:00 p.m. –3:45 p.m. Issue Identification—Group Discussion

3:45 p.m.–4:15 p.m. Global Perspective of Concept Map Ratings

Mary Kane and Dan McLinden

4:15 p.m.–5:00 p.m. Concept Mapping Group Exercise II (Grouped by Table) 

Mary Kane and Dan McLinden

5:00 p.m.–5:30 p.m. Opportunities for Action—Group Discussion

6:00 p.m. Dinner 

Guest Speakers: Everett Rogers, author of Dissemination of

Innovations, and K. “Vish” Viswanath, National Cancer Institute

Topic: Dissemination and Diffusion
57

Thursday, November 29, 2001

8:00 a.m.–8:15 a.m. Recap of Day 1 and Goals for Day 2 

Harold Freeman

8:15 a.m.–9:00 a.m. Potential Reduction in Incidence and Mortality Simulation

Jeanne Mandleblatt and Robin Yabroff (Georgetown University)

9:00 a.m.–9:15 a.m. Identifying Key Local Information for Action Planning (County

Fact Sheets)

Steve Wyatt

9:15 a.m.–10:00 a.m. Making a Measurable Difference: Moving Data into Action

Jon Kerner

10:15 a.m.–11:30 a.m. Breakout Session I—(5 Regional Groups)

–Recommend actions that should be taken at the national level

(e.g., Congress, HHS, etc.)

11:30 a.m.–12:30 p.m. Regional Groups Report Back

12:30 p.m.–1:30 p.m. Lunch

Guest Speaker: Maria Fernandez, University of Texas Health Science

Center at Houston

Topic: The Colonias in Texas

1:30 p.m.–3:00 p.m. Breakout Session II

–Develop one-year action plan of rank-ordered priorities to reduce

cervical cancer mortality in high mortality counties in your state

3:15 p.m.–4:00 p.m. Regional Groups Report Back

4:00 p.m. Roundtable Meeting Adjourns
58

Preliminary Think Tank Agenda 

(Think Tank Core Members Remain)

Thursday November 29, 2001

4:30 p.m.–5:00 p.m. Discussion of Final Report Issues and Solicit Leaders for Drafting

Recommendations for Final Report Outline

Joe Harford

6:30 p.m.–6:45 p.m. Using Concept Mapping and Surveillance Evidence Review Data

for Identifying Key Issues

Jon Kerner

6:45 p.m.–8:00 p.m. Identify Key Issues and Leaders/Brainstorming Activity

Mary Kane

Friday November 30, 2001

8:00 a.m.–8:30 a.m. Charge to Think Tank Members

Harold Freeman

8:30 a.m.–10:00 a.m. Assignment to Groups 1–5

–Break out into 4 or 5 groups to collaborate on

recommendations/suggestions for action on first 4–5 key issues

identified on Thursday night

10:15 a.m.–12:00 p.m. Assignment to groups 6–10

–Break out into 4 or 5 groups to collaborate on

recommendations/suggestions for action on the remaining key

issues identified on Thursday night

12:45 p.m.–1:15 p.m. Results of Brainstorming Activity

Outline of Table of Contents for Report

1:15 p.m.–2:00 p.m. Wrap-Up and Adjourn
59

Mary Lou Adams, Ph.D., R.N.

African American Breast Cancer Outreach

University of Texas, Austin

Pasqual Auguste, R.N.

Haitian Association Against Cancer

Pamela Balmer, M.P.A.

Division of Women’s Health Program

Margo Blake, M.Ed.

Florida Department of Health

John Boggess, M.D.

Department of Obstetrics and Gynecology

University of North Carolina at Chapel HIll

Florence Bonner, Ph.D.

Howard University

College of Arts and Sciences

Viki Brant, M.P.A.

Alabama Department of Public Health

Nancy Breen, Ph.D.

National Cancer Institute

Division of Cancer Control and Population

Sciences

Patricia Brooks, M.S.

Texas Cancer Data Center

Sandra Brooks, M.D.

Division of Gynecologic Oncology

University of Maryland School of Medicine

Pam Brown, M.P.A.

West Virginia University

John Burley, Ph.D.

Ladies First Program

National Breast and Cervical Cancer Early

Detection Program

Janis Campbell, Ph.D.

Chronic Disease Service

Oklahoma State Department of Health

Sue Cantrell, M.D.

Lenowisco Health District

Ken Chu, Ph.D.

National Cancer Institute

Center to Reduce Cancer Health Disparities

Ann Coker, Ph.D.

Department of Epidemiology and Biostatistics

University of South Carolina

Angie Colbert, M.Ed.

American Cancer Society

Lynn Couey, M.S.W., M.A.

Bureau of Chronic Disease Services

New York State Department of Health

Richard Couto, Ph.D.

University of Richmond

Participant Roster
60

Cathy Coyne, Ph.D.

Department of Community Medicine 

School of Medicine 

West Virginia University

Martin Crane, Ph.D.

Greenville Hospital System 

Department of Research

Terry Davis, M.D.

Louisiana State University

Bruce Dembling, Ph.D.

University of Virginia School of Medicine

Department of Health Evaluation Sciences

Susan DesHarnais, Ph.D., M.P.H.

American College of Surgeons

Susan Devesa, Ph.D.

National Cancer Institute

Division of Cancer Epidemiology and Genetics

Maria Fernandez, Ph.D.

University of Texas at Houston 

Health Science Center 

School of Public Health

Center for Health Promotion and Prevention

Research

Shannon Fisher

Health Division, Leech Lake Tribal Council

Susan Fisher-Hoch, M.D.

University of Texas School of Public Health at

Brownsville

Melody Fortune, B.A.

Mississippi State Breast and Cervical Cancer

Program

Mona Fouad, M.D., Ph.D.

University of Alabama at Birmingham

Division of Preventive Medicine

Gil Friedell, M.D.

Markey Cancer Center

University of Kentucky

Melissa Gallison, Ph.D.

American Cancer Society

Elizabeth Garner, M.D., Ph.D.

Brigham and Women’s Hospital

Bill Given, Ph.D.

Michigan State University

Paul Gordon, M.D.

University of Arizona College of Medicine in

Tucson

Tracy Grimes, R.N.

Area Health Education Center

University of Arkansas Medical Sciences

Irene Hall, Ph.D.

Centers for Disease Control and Prevention

Joel Halverson, M.A.

Office of Social Environment and Health

Research

Community Medicine

West Virginia University
Edward Hannigan, M.D.

Division of Gynecologic Oncology 

University of Texas Medical Branch

Joe Harford, Ph.D.

National Cancer Institute

Roderick Harrison, Ph.D.

Howard University

Jim Hertog, Ph.D.

School of Journalism and Telecommunications 

University of Kentucky

Michael Hicks, Ph.D.

Lewis College of Business, Marshall University

Carolina Hinestrosa, M.A., M.P.H.

Nueva Vida

Felicia Hodge, Dr.P.H.

University of Minnesota

Lucy Im, M.P.H.

Arkansas Breast and Cervical Cancer Control

Program

Wendelyn Inman

Tennessee Department of Health

Pam Iron, M.Ed.

National Indian Women’s Health Resource

Center

Frank Jackson

CRCHD, NCI

Mildred Jackson

Black Belt

Mickey Jacobs, M.S.H.P.

Texas Cancer Council

Sharon Jerome, B.A.

Maine Bureau of Health

Maine Breast and Cervical Health Program

Cheryl Jones, R.N.

Breast and Cervical Cancer Early Detection

Program

Chronic Disease Services

Oklahoma State Department of Health

Pam Joyner

Breast and Cervical Health Program

Washington State Department of Health

Mary Kane

Concept Systems Inc.

Doug Kaplan, M.P.H.

Maryland Department of Health and Mental

Hygiene

Judy Kaye, R.N.

University of South Carolina

Jon Kerner, Ph.D.

National Cancer Institute

Barbara King

Unicoi County Schools

61
Henry King, Ph.D.

Appalachian Regional Commission

Karen Knight, M.S.

North Carolina Central Cancer Registry

Carol Kosary, M.A.

National Cancer Institute

K. Krishnan, M.D., F.R.C.P.

East Tennessee University

Herschel Lawson, M.D.

Program Services Branch, DCPC, NCCDPHP,

CDC

Nancy Lee, M.D.

Centers for Disease Control, NCCDPHP

Gene Lengerich, V.M.D.

Penn State University

Barbara Leonard, M.P.H.

Maine Breast and Cervical Cancer Health

Program

Nan Leslie, M.D.

West Virginia University

Anna Levy, M.S.

National Cancer Institute

Office of Science Planning and Assessment

Patrick Linson, M.D., M.P.H.

Harvard Medical School

Franci Livingston, J.D.

Cancer Control Section

Minnesota Department of Health

Katherine Look, M.D.

Indiana University Medical Center

Gena Love, B.A.

People Living Through Cancer Inc.

Joseph Lucci, M.D.

Division of Gynecologic Oncology

University of Texas Medical Branch

Carol Marquez, M.P.H.

CAIRE, Southern California Office 

Deborah McGill, R.N., Dr.P.H., C.H.E.S.

R.O.W. Sciences, National Training Center

Rosemarie McIntyre

Planning, Evaluation and Training Section

CDC Division of Cancer Prevention and Control

Corliss McKeever, M.S.W.

African American Health Coalition

Libby McKinney

Mitchell Community Health Partnership

Ron McKinney

Mitchell Community Health Partnership

Dan McLinden, Ed.D.

Concept Systems Inc.

62
63

Joy Melnikow, M.D., M.P.H.

Department of Family and Community

Medicine

University of California, Davis

Margaret Mendez, M.D.

Bureau of Women’s Health 

Texas Department of Health

Wendy Miller, C.N.S.

Wautauga Medical Center

Jane Moore, Ph.D., R.D.

Department of Human Services, Health Services

Rosamaria Murillo, M.S.W.

National Breast and Cervical Cancer Early

Detection and Prevention Program

Texas Department of Health

Margaret Murphy, B.A.

New Hampshire Breast and Cervical Cancer

Screening Program

Brad Myers, B.A.

Centers for Disease Control

Mary Kay Myers

Colorado Women’s Cancer Initiative

Pat Newman, M.G.A.

National Cancer Institute 

Office of Cancer Communications

Cherie Nichols, M.B.A.

National Cancer Institute

M. Norman Oliver, M.D.

Department of Family Medicine

University of Virginia Health Systems

Cecilia Olkowski, M.B.A.

American Cancer Society, California Division

Karen Parker, M.S.W.

National Cancer Institute

Ed Partridge, M.D.

University of Alabama

Tom Plaut, M.D.

Center for Assessment and Research Alliance 

North Carolina Mars Hill College

Deborah Porterfield, M.D.

North Carolina Department of Health and

Human Services

Irene Prabhu Das, M.P.H.

Best Chance Network

Sara Proctor, P.A.

Catholic Mobile Medical Services

Amalie Ramirez, Dr.P.H.

Chronic Disease Prevention and Control

Research Center

Baylor College of Medicine

Eddie Reed, M.D.

MBR Cancer Center, West Virginia University

Everett Rogers, Ph.D.

University of New Mexico

Department of Communications and Journalism
Marianne Ronan, M.P.A.

Missouri Department of Health, Bureau of

Cancer Control

Vanessa Ross, M.A.

Association of Clinicans for the Underserved

Kimberly Ross-Tilley, R.N.C., C.N.M., M.S.N.

Delaware Department of Health 

Division of Public Health/Screening for Life

Rima Rudd, Sc.D.

Harvard School of Public Health

Janice Ryu, M.D.

University of California, Davis Radiation

Laboratory

Doreleena Sammons-Posey, M.S.

New Jersey Department of Health and Senior

Services

Maureen Sanderson, Ph.D.

University of Texas School of Public Health at

Brownsville

Debbie Saslow, Ph.D.

American Cancer Society

George Sawaya, M.D.

University of California, San Francisco

Mario Schootman, M.D.

Division of Health Behavior Research

Washington University

Ruth Schultz, R.N., M.N., C.H.E.S.

Georgia Department of Human Resources

Randy Schwartz, M.S.P.H.

American Cancer Society, New England Division

Miriam Schwarz, M.P.A., R.H.I.A.

Community Health Resources Services

Mountain Area Health Education Center

Patty Sewell, M.P.A.

Kentucky Women’s Cancer Screening Project

Chronic Disease Prevention and Control Branch

Carol Steiner, R.N., M.N.

Georgia Department of Human Resources

John Strosnider, D.O.

Pikeville College School of Osteopathic

Medicine

Roxanne Struthers, Ph.D.

University of Minnesota Nursing School

Lucina Suarez, Ph.D.

Texas Department of Health

Sarah Thomas, M.S.N.

Appalachian Health Department

Ted Trimble, M.D., M.P.H.

National Cancer Institute

Caryl Trotter, M.A.

New Mexico Breast and Cervical Cancer

Program

Department of Health

Deb Van Den Berghe, B.A.

Iowa Department of Public Health

64
65

Mary Ann Van Duyn

National Cancer Institute

Office of Cancer Communications

Roberto Villarreal, M.D., Ph.D.

South Texas Health Research and 

Injury Prevention Centers

Cynthia Vinson, M.P.A.

National Cancer Institute

Vish Viswanath, Ph.D.

National Cancer Institute

Kristina Wait, M.Ed.

American Cancer Society

Joan Walker, M.D.

University of Oklahoma

Robert Walker, M.D., M.S.

Marshall University

Kathy Ward, B.S.

Chronic Disease Prevention and Control

Division

Nebraska Department of Health and Human

Services

Fran Wheeler, Ph.D.

University of South Carolina

John Wilson, M.S., Ph.D.

Ohio State University

Sabine Woeber, M.P.H.

University of Texas School of Public Health at

Brownsville

Steve Wyatt, M.D.

University of Kentucky

Robin Yabroff, Ph.D.

Georgetown University 
66

Despite an overall decline in cervical cancer

mortality nationally, relatively consistent

geographic disparities in mortality have

persisted for decades. Because of these

longstanding disparities, and because the tools

needed to prevent cervical cancer deaths are

available, the National Cancer Institute (NCI)

Center to Reduce Cancer Health Disparities

(CRCHD) launched a project to present the data,

literature, stakeholder input, conclusions, and

recommendations for policy changes and

interventions that will drastically reduce, if not

virtually eliminate, disparities in cervical cancer

death. This document summarizes outcomes

from the first of two phases of this effort.

Phase 1 Activities

Phase 1 focused on collecting and analyzing the

historical and most current data on cervical

cancer incidence, screening, treatment, and

mortality in the United States. NCI staff

assembled and reviewed available statistics;

these data were presented to the Center and also

were shared with NCI staff with an interest in

cervical cancer research. In addition, NCI

commissioned a review of the literature

published between 1966 and May 2001, as well

as some studies published between 1950 and

1965, on cervical cancer mortality among rural

women.

From November 28–30, 2001, a Roundtable

was held in Corpus Christi, TX. The 144

participants included Federal, state, and local

planning and program personnel; researchers

from several disciplines with an interest in

cervical cancer; clinicians; advocates; educators;

communications specialists; and NCI CRCHD

planning, and cancer control personnel.

Findings from the data and literature reviews

were shared with the participants.

Prior to the meeting, attendees were asked

to participate in an online “concept mapping”

exercise in which they submitted ideas for

actions they believed could reduce cervical

cancer mortality in their own state or region.

These ideas were collated, redundancies were

eliminated, and the ideas were sorted into

conceptual categories. The condensed data were

displayed on a “concept map” that identified

related ideas in four major areas:

• outreach and services

• education and communication

• advocacy and partnership

• research

This map was presented to Roundtable

attendees, who were asked to use these potential

focus areas to consider possible policy changes,

activities, or interventions that could be carried

out at the Federal level, at the state/local level,

and in specific geographic regions with high

cervical cancer mortality.

Cross-Cutting Issues and Needs

In addition to a broad range of ideas in the four

possible focus areas, several cross-cutting issues

Executive Summary—Phase 1
67

and needs and suggestions for addressing them

emerged from the Roundtable discussions: 

• Build a network of people involved in all areas

of cervical cancer education, screening,

treatment, and advocacy, using the

Roundtable participants as the initial core of

this network.

• Provide proactive support at the national level;

however, action must take place

predominantly at the community level to

address local problems.

• Provide technical assistance to foster

collaborations, coordination, and publication

by and among states and regions; facilitate ties

to existing clinical and research networks and

consortia.

• Improve accountability and quality control;

responsibility for implementing

recommendations must be clear and the

products of recommendations must be

evaluated.

• Ensure that cultural relevance permeates all

activities in each of the focus areas.

• Develop mechanisms and provide funding

needed to ensure the sustainability of successful

interventions.

• Move toward a “whole woman” approach to

women’s health that integrates cervical cancer

outreach, screening, education, and followup

into other services, builds on existing

infrastructure, and minimizes the

fragmentation currently caused by categorical

funding.

Next Steps

Phase 2 of the project will tap the

understanding derived from the data, literature,

and Roundtable input to develop better insight

into people’s daily life experiences that

contribute to cervical cancer mortality

disparities—most specifically, poverty, other

adverse circumstances, or cultural and/or

linguistic differences. CRCHD will convene one

or more additional meetings to expand upon

the findings from the Roundtable and related

activities.

Final Report Plan

CRCHD’s cervical cancer mortality project will

conclude with a report containing

recommendations for action including, but not

limited to, the four major focus areas. The

report will be presented to the Director, NCI,

and will be made available to decision-makers at

national, regional, state, and local levels.

CRCHD will be proactive in informing policymakers and partners about opportunities for

policy change and intervention. NCI follow-up

activities will be based on the conclusions and

recommendations contained in the final report

and subsequent discussion about them with

stakeholders in the cervical cancer community.

A copy of the full report can be obtained from:

NCI Center to Reduce Cancer Health Disparities

6116 Executive Blvd., Suite 602

Rockville, MD 20892

69

Think Tank Agenda

National Cancer Institute

Center to Reduce Cancer Health Disparities

Bethesda, Maryland

May 8, 2002

9:00 a.m–9:30 a.m. Opening Remarks and Introductions

Harold Freeman

9:30 a.m.–9:45 a.m. Process Employed in Phase 1 of the Project

Jon Kerner

9:45 a.m.–10:00 a.m. Phase 1 Findings

Harold Freeman

10:00 a.m.–10:15 a.m. Updated and New Cervical Cancer Mortality Maps

Susan Devesa

10:15 a.m.–10:30 a.m. Questions/Discussion

Group

10:45 a.m.–12:15 p.m. Discussion

Group

Question 1: What are the characteristics of each population and

its culture that may be contributing to higher cervical cancer

mortality?

• Hispanics along the Texas-Mexico border

• African Americans in the Rural South

• Whites in Appalachia

Appendix B Regions With High Cervical Cancer Mortality—Phase 2
70

1:15 p.m.–2:45 p.m. Discussion

Group

Question 2: What aspects of the conditions in which the

population lives may be contributing to higher cervical cancer

mortality?

• Hispanics along the Texas-Mexico border

• African Americans in the Rural South

• Whites in Appalachia

3:00 p.m.–4:15 p.m. Discussion: To Where From Here?

Group

Question 3: Based on what we know, what can/should be done

now to save lives?

Question 4: What else must we do/learn?

• Commission in-depth case studies?

• Document best practices/potentially replicable successes?

• Conduct infrastructure analyses?

4:15 p.m.–4:30 p.m. Final Thoughts

Group

4:30 p.m. Adjourn
71

Question 1: Factors to consider:

Overall world view

Religious affiliations and views

View of disease and health

Concept of prevention

Social and family support systems/importance of extended family

Family relationships/male-female power relationships

Importance of privacy/willingness to disclose personal information

Sexual attitudes and taboos

Educational attainment/literacy/health literacy

Ways of seeking information

Culture of poverty/primacy of basic needs

Other?

Question 2: Factors to consider:

Discrimination/social injustice

Political structure and environment

Places of residence/geographic isolation

Housing

Transportation available: personal, public

Communication channels and technology (telephone, television, radio, Internet, word of mouth)

Job types and availability of work 

Income

Exposure to environmental and workplace hazards

Health care resources in the area, including information

Access to health care resources, including insurance, or ability to pay

Childcare issues

Other?
72

Participant Roster

Mary Anglin, Ph.D., M.P.H.

University of Kentucky

Sarah Birckhead, M.S.W.

National Cancer Institute

Florence Bonner, Ph.D.

Howard University

College of Arts and Sciences

Dionne Burt

National Cancer Institute

Kenneth C. Chu, Ph.D.

National Cancer Institute

Jane Daye, M.S.

National Cancer Institute

Center to Reduce Cancer Health Disparities

Susan DesHarnais, Ph.D., M.P.H.

American College of Surgeons

Susan Devesa, Ph.D.

National Cancer Institute

Division of Cancer Epidemiology and Genetics

Mark Dignan, Ph.D., M.P.H.

Prevention Research Center

University of Kentucky

Harold Freeman, M.D.

National Cancer Institute

Gil Friedell, M.D.

Markey Cancer Center

University of Kentucky

Roland Garcia, Ph.D.

National Cancer Institute

Jorge Gomez, M.D., Ph.D.

National Cancer Institute

Roderick Harrison, Ph.D.

Howard University

Frank Jackson

National Cancer Institute

Jemarion Jones

National Cancer Institute

Jon Kerner, Ph.D.

National Cancer Institute

Gene Lengerich, V.M.D.

Penn State University

Jeanne Mandelblatt, M.D., M.P.H.

Georgetown University

Sarah Moody-Thomas, Ph.D.

Louisiana State University Health Sciences

Center
73

Wayne Myers, M.D.

Consultant

Pat Newman, M.G.A.

National Cancer Institute 

Office of Cancer Communications

Cherie Nichols, M.B.A.

National Cancer Institute

Karen Parker, M.S.W.

National Cancer Institute

Ed Partridge, M.D.

University of Alabama

Suzanne Reuben, B.S.

Progressive Health Systems

Vickie Shavers, Ph.D.

National Cancer Institute

Ciro Sumaya, M.D.

Texas A & M University

Ted Trimble, M.D., M.P.H.

National Cancer Institute

Mary Ann Van Duyn, Ph.D.

National Cancer Institute

Vish Viswanath, Ph.D.

National Cancer Institute

Nada Vydelingum, Ph.D.

National Cancer Institute

Barbara Wingrove, M.P.H.

National Cancer Institute

Steve Wyatt, M.D.

University of Kentucky

75

Appendix C Cervical Cancer Mortality—

A Marker for the Health of Poor and Underserved

Women: Toward an Interagency Collaboration

To Reduce Disparities

Think Tank Agenda

National Cancer Institute

Center to Reduce Cancer Health Disparities

Bethesda, Maryland

October 28–29, 2002

October 28, 2002

8:30 a.m.–8:45 a.m. Welcome, Introductions, and Overview

Harold Freeman

8:45 a.m.–9:00 a.m. Project Activities to Date

Harold Freeman

9:00 a.m.–9:15 a.m. Presentation of Maps

Barbara Wingrove

9:15 a.m.–9:30 a.m. Discussion 

9:45 a.m.–10:15 a.m. Cervical Cancer and Other Health Conditions in Appalachia

Gene Lengerich

Angel Rubio

Pamela Brown

10:15 a.m.–10:30 a.m. Discussion 

10:30 a.m.–11:00 a.m. Cervical Cancer and Other Health Conditions in the Deep South

Ed Partridge

11:00 a.m.–11:15 a.m. Discussion 
76

12:15 p.m.–1:15 p.m. Presentations by Agency Representatives: 

• Centers for Medicare and Medicaid Services (CMS) David

Greenberg

• Health Resources and Services Administration (HRSA)

David Stevens

• National Cancer Institute (NCI)

HRSA collaboration

Neeraj Arora

1:15 p.m.–1:35 p.m. Discussion 

1:35 p.m.–2:35 p.m. Agency Presentations, continued 

• Department of Health and Human Services (DHHS) Office of

Minority Health (OMH)

Nate Stinson

• Agency for Healthcare Research and Quality (AHRQ)

Kay Felix-Aaron

2:35 p.m.–2:55 p.m. Discussion 

3:10 p.m.–4:15 p.m. Agency Presentations, continued

• Centers for Disease Control and Prevention (CDC) Chronic

Disease Center

Nancy Lee

4:15 p.m.–4:35 p.m. Discussion 

4:35 p.m.–4:45 p.m. Wrap-Up, Day 1
77

October 29, 2002

8:30 a.m.–8:45 a.m. Brief Recap, Overview of Day 2

Harold Freeman

8:45 a.m.–3:30 p.m. Discussions on the following questions:

8:45 a.m.–9:45 a.m. Question 1: What do you see as the major barriers, bottlenecks,

gaps, or disconnects in the total system of federally supported

health care programs serving poor and underserved women? 

9:45 a.m.–10:45 a.m. Question 2: How do you believe publicly funded health services

for women experiencing cervical cancer and other health

disparities could be better coordinated or otherwise improved? 

11:00 a.m.–12:00 p.m. Question 3: Assuming no additional funding becomes available,

what could each agency do to better coordinate services or

otherwise extend its reach to the target populations? Is it possible

to redirect existing funds to achieve greater synergies, or to share

or piggyback resources?

1:00 p.m.–2:15 p.m. Question 4: How can this group of agency representatives and

the CRCHD continue to work together to realize improvements

in the health of women who depend on publicly funded health

services? Are there other agencies or resources that should be

involved?

2:15 p.m.–2:30 p.m. Wrap-Up and Adjourn
78

Mary Anglin, Ph.D., M.P.H.

University of Kentucky

Neeraj Arora, Ph.D.

National Cancer Institute

Barbara Bonaparte

National Cancer Institute

Nancy Breen, Ph.D.

National Cancer Institute

Pamela Brown, M.P.A.

West Virginia University

Shanita Williams Brown, Ph.D., M.P.H.

National Cancer Institute

Dionne Burt

National Cancer Institute

Kenneth C. Chu, Ph.D.

National Cancer Institute

Peggy Coleman, R.N., M.S.

Health Resources and Services Administration

Jane Daye, M.S.

National Cancer Institute

Center to Reduce Cancer Health Disparities

Susan DesHarnais, Ph.D., M.P.H.

American College of Surgeons

Susan Erickson, B.S.

National Cancer Institute

Ellen Feigal, Ph.D.

National Cancer Institute

Kaytura Felix-Aaron

Agency for Healthcare Research and Quality

Mona Fouad, M.D., Ph.D.

University of Alabama at Birmingham

Division of Preventive Medicine

Harold P. Freeman, M.D.

National Cancer Institute

Gil Friedell, M.D.

Markey Cancer Center

University of Kentucky

Roland Garcia, Ph.D.

National Cancer Institute

David Greenberg

Centers for Medicare and Medicaid Services

Elisabeth Handley

National Cancer Institute

Betty Lee Hawks

Office of Minority Health

Office of the Secretary

Department of Health and Human Services

John Hebb, Ph.D., M.B.A.

Centers for Medicare and Medicaid Services

Frank Jackson

National Cancer Institute

Participant Roster
79

Jon Kerner, Ph.D.

National Cancer Institute

Nancy Lee, M.D.

Centers for Disease Control and Prevention

Gene Lengerich, V.M.D.

Penn State University

Anna Levy

National Cancer Institute

Grace Xueqin Ma, Ph.D.

Temple University

Francis Mahaney

National Cancer Institute

Jim Marks, M.D.

Centers for Disease Control and Prevention

Division of Chronic Disease

Stephen McPhee, M.D.

Division of General Internal Medicine 

University of California, San Francisco

Wayne Myers, M.D.

Consultant

Pat Newman, M.G.A.

National Cancer Institute 

Cherie Nichols, M.B.A.

National Cancer Institute

Ed Partridge, M.D.

University of Alabama

Suzanne Reuben, B.S.

Progressive Health Systems

Angel Rubio, M.A.

Appalachia Cancer Network

Vickie Shavers, Ph.D.

National Cancer Institute

David Stevens, M.D.

Health Resources and Services Administration

Barbara Wingrove, M.P.H.

National Cancer Institute


NIH Publication No. 05-5282

Printed June 2005