The analysis and recommendations presented in this report represent a synthesis of the fi ndings of a Think Tank meeting 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
Emmanuel A. Taylor, Dr.P.H.
Health Scientist Administrator
Center Staff Involved in Program Development
Nadarajen A. Vydelingum, Ph.D.
Deputy Director
Barbara K. Wingrove, M.P.H.
Chief, Health Policy Branch
Emmanuel A. Taylor, Dr.P.H.
Health Scientist Administrator
Participants
Economic Costs of Cancer Health Disparities Think Tank
December 6-7, 2004, Bethesda, MD: Appendix A
Special Acknowledgements
Martin Brown, Ph.D., Joseph Lipscomb, Ph.D., and Scott Ramsey, M.D., Ph.D.
for their expert consultation on the drafts and suggestions for revision of the fi nal report, in addition to their participation as members of the December, 2004
Think Tank.
Manuscript Preparation (NCI Contract No. 263-FQ-513547)
Sujha Subramanian, Ph.D.
Shahnaz Khan, M.P.H.
RTI International
Planning and Logistical Support
NOVA Research Company (NCI Contract No. N02-CO-34222)
Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 3
FOREWORD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
EXECUTIVE SUMMARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
SECTION 1 INTRODUCTION
1.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
1.2 Objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
1.3 Think Tank Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
1.4 Organization of Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
SECTION 2: OVERVIEW
2.1 Defi nition of Disparity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
2.2 Determinants of Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Factors Within the Health Care Delivery System . . . . . . . . . . . . . . . . . . 14
Factors External to the Health Care Delivery System . . . . . . . . . . . . . . . 15
2.3 Screening, Diagnosis, and Treatment Disparities: the
Cancer Care Continuum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
SECTION 3: TOTAL COST OF CANCER CARE
3.1 Overview of Cost Domains . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
3.2 Overall Cost of Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Direct Health Care Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Time Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Employment Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
3.3 Data Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
SECTION 4: ECONOMIC BENEFITS OF REDUCING CANCER HEALTH DISPARITIES
TABLE OF
4.1 Benefi ts of Reducing Cancer Health Disparities . . . . . . . . . . . . . . . . . . . 27
CONTENTS
4.2 Measuring the Value of Reducing Disparities . . . . . . . . . . . . . . . . . . . . . 28
Estimating Mortality, Morbidity, and HRQL Impacts . . . . . . . . . . . . . . . . 28
Estimating Economic Impacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
SECTION 5: BENEFITS AND COSTS OF POLICIES TO REDUCE CANCER
HEALTH DISPARITIES
5.1 Why Economics Matter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Comparing Cost and Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Budget Impact Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
5.2 Importance of Perspective in Economic Assessment . . . . . . . . . . . . . . 34
5.3 Calculating Incremental Cost-Effectiveness Ratio . . . . . . . . . . . . . . . . . 35
5.4 Characteristics of Potentially Cost-Effective Interventions . . . . . . . . . 35
5.5 Provider Incentives and Barriers to Change . . . . . . . . . . . . . . . . . . . . . . 35
SECTION 6: RECOMMENDATIONS AND RESEARCH AGENDA
6.1 Research Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
6.2 Policy Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
REFERENCES. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
GLOSSARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
APPENDIX A: PARTICIPANT LIST . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
APPENDIX B: ECONOMIC COSTS — DISCUSSION QUESTIONS . . . . . . . . . . . . . 52
APPENDIX C: ECONOMIC COSTS — BACKGROUND PAPER . . . . . . . . . . . . . . . . 54
APPENDIX D: AGENDA AND MEETING PRESENTATIONS . . . . . . . . . . . . . . . . . . . 70
4 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings LIST OF FIGURES
Figure 1: Ratio of the Probability of Diagnosis of Cancer at
Late Stage, Uninsured Compared with Insured, 1994 . . . . . . . . . . . 14
Figure 2: Causes of Cancer Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . 15
Figure 3: U.S. Cervical Cancer Mortality by Race
and Poverty Level, 1996-2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
Figure 4: Critical Disconnect Between Research/Discovery
and Delivery of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Figure 5: Cancer Care Continuum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Figure 6: Treatment Cost and Survival: Breast Cancer . . . . . . . . . . . . . . . . . . 21
Figure 7: Framework for Assessing Economic Costs of
Cancer Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Figure 8: Cost Effectiveness Plane . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Appendix Figure C-1: Causes of Health Disparities . . . . . . . . . . . . . . . . . . . . . 56
Appendix Figure C-2: The Cancer Care Continuum . . . . . . . . . . . . . . . . . . . . . 58
Appendix Figure C-3: Types of Health Care Costs . . . . . . . . . . . . . . . . . . . . . . 62
LIST OF TABLES
Table 1: Specifi c Cost Elements Required for Measuring
Total Cost of Cancer Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Table 2: Cancer-Related Treatment Cost of Colorectal Cancer . . . . . . . . . . . 22
Table 3: Estimates of Direct Costs for Cancer
Based on SEER Medicare Data, 1996 . . . . . . . . . . . . . . . . . . . . . . . . . 22
Table 4: Time Costs Related to Colorectal Cancer Treatment:
Difference in Cost for Cases Versus Controls (Net Costs) . . . . . . . . 22
Table 5: Comparison of CEA, CBA and CUA . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 5
Foreword
Why examine the cost of cancer health disparities? Disparities in cancer care and outcomes result in both economic and human costs. Public policy approaches to eliminate cancer-related disparities require an understanding of these costs to fi nd appropriate balances between the actual dollars spent and the potential value to American society. For these reasons, understanding the costs associated with these disparities is vital to the work of the National Cancer Institute (NCI) Center to Reduce Cancer Health Disparities.
This fi rst NCI Think Tank on the economic costs of cancer health disparities was an important step in exploring these issues.
Considerations of the cost of cancer health disparities often focus principally on the expenditures associated with eliminating existing disparities. However, current disparities have an ongoing cost that is less well recognized. Specifi cally, all people with cancer in America eventually receive care, since severely symptomatic patients seldom are denied hospital care. But if treatment is ineffective because the disease already is advanced, the associated costs likely will be higher both in dollars and in human suffering.
The Think Tank participants emphasized the distinction that must be made between cost and value.
They further underscored that both cancer disparity costs and the value accruing from reducing these disparities may be tangible and intangible. For example, tangible costs may include dollars spent on treatment and lost wages, whereas tangible value may include reduced individual and health system costs, lives saved, and restored productivity. Intangible costs of cancer may include emotional anguish and diminished quality of life for patients and their families, whereas intangible value may include reduced suffering and the opportunity to redirect health care resources to disease prevention.
Disparities specifi c to cancer may be among the more easily measured types of health disparities because of existing cancer-specifi c data collection infrastructure. Even so, based on the limited studies to date using these data, we cannot yet quantify the full costs of existing cancer disparities, the cost of eliminating these disparities, or the real and perceived value of eliminating them. Nor can we assess, except at a philosophical level, whether the value is worth the cost.
Moreover, perceptions of cost and value may vary according to different cultural and societal norms.
Cancer health disparities differ by disease, by population, by geographic region, by age, by gender, and by other parameters. Therefore, the economic costs of cancer health disparities must be assessed from many perspectives, including those of society in general, government, population groups, employers, insurers, and each affected individual.
The fundamental question centers on the cost-benefi t that could be realized over time compared with the current economic and human costs of cancer health disparities. Exploring this and other related crucial questions illuminated the current gaps in knowledge that must be fi lled to appropriately frame and address the issues. It was clear from the Think Tank deliberations that no consensus currently exists on how to measure or balance the costs and benefi ts to the nation of eliminating cancer health disparities.
Most Americans would agree that in the aggregate, we have made great advances in this nation with respect to disease in general, as refl ected by the remarkable increases in average life span and quality of life since 1900. But some groups of people have not enjoyed these benefi ts as much as others, as evidenced by their outcomes of cancer and other diseases. Many people, regardless of economic status, education, and insurance coverage, have great diffi culty negotiating the health care system and getting from the point of an abnormal fi nding and a cancer diagnosis through the treatment of their disease.
6 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings
This problem, often resulting in reduced survival, infl icts the greatest burden on the poor, who typically lack fi scal, educational, and information resources.
A cascade of problems—such as fi nancial and geographic barriers to treatment; ineffective provider-patient communication; inadequate screening, and insuffi cient post-treatment and long-term followup—can occur in varying combinations over time, resulting in increased cancer-related costs. We do not fully understand all of the potential interrelationships of these problems, but our knowledge of them has improved. One thing has become clear: social injustice leading to unfair inequities is at the core of most of these problems.
Realistically, we know that disparities will always exist at some level, because our social and health care systems cannot be corrected such that every person will have equal access to care, comparable living conditions, and equal amounts of resources. Nonetheless, we suggest that we can dramatically minimize disparities and their costs by agreeing as a society, and committing to the belief, that it is unacceptable for any person with cancer to go untreated. Further, we must ensure that any inequities in care are not caused or exacerbated by biases related to race, ethnicity, culture, or socioeconomic status.
The participants in this Think Tank were drawn from diverse disciplines, including health care delivery, health economics, health policy, statistics, health services research, public health, and social science research. They were charged to consider the underpinnings of this complex problem and offer suggestions for better understanding and addressing these issues. Their deliberations provided the basis of the recommendations in this report.
Cancer health disparities are not only an economic and medical concern but also an extraordinary moral and ethical dilemma for this nation. We hope that the considerations and recommendations contained in this report will be a tool to stimulate vigorous discussion and bold action to address these issues.
Harold P. Freeman, M.D.
Nadarajen A. Vydelingum, Ph.D.
Senior Advisor to the Director
Deputy Director
National Cancer Institute
Center to Reduce Cancer Health Disparities
Rockville, MD
National Cancer Institute
Rockville, MD
Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 7
Executive Summary
here is a signifi cant disconnect between the development
of effi cacious prevention and treatment options estab-
Tlished through cancer research and the delivery of this
care to all population groups, most notably cancer patients from
certain racial and ethnic minority groups, individuals with low
socioeconomic status, residents in certain geographic locations, and individuals from other medically underserved groups.1 Improving
the delivery of cancer care to these population subgroups may help
to reduce cancer health disparities in the United States.
There are several different defi nitions of disparities and the con-
clusions regarding the impact of disparities can differ based on the defi nition used.2 The NCI’s defi nition of cancer health disparities is as follows:
8 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings
“Disparities, or inequalities, occur when members of some population groups do not enjoy the same health status as other groups.
Disparities are determined and measured by three health statistics: incidence (the number of new cancers), mortality (the number of cancer deaths), and survival rates (length of survival following diagnosis of cancer). Health disparities occur when one group of people has a higher incidence or mortality rate than another, or when survival rates are less for one group than another.
Disparities are most often identifi ed along racial and ethnic lines, i.e., African Americans, Hispanics, Native Americans/Alaska Natives, Asian Americans/Pacifi c Islanders, and whites have different disease rates and survival rates. However, factors contributing to disparities extend beyond race and ethnicity. For example, cancer health disparities can also involve biological, environmental, and behavioral factors, as well as differences on the basis of income and education.”3
Disparities in care exist along the entire cancer care continuum—from primary prevention, to screening and diagnosis, to treatment and follow-up services. Examining and understanding the economic and human costs of cancer health disparities to patients, families, employers, providers, and society as a whole may be helpful in developing strategies to eliminate or reduce such disparities. There could be signifi cant benefi ts to eliminating these disparities, including a reduction in mortality, decreases in cancer- and treatment-related morbidity, and improved quality of life. Measurement of these human benefi ts can be captured in part through estimates of quality-adjusted life years (QALYs), which are composite measures that include improvements in the length of life and in the quality of life associated with a particular healthcare intervention. The overall economic value to society of reducing disparities can be assessed through cost-effectiveness analyses and cost-of-illness and/or value-of-health studies. Components of these studies may include the direct medical and non-medical costs (related to provision of health services), indirect costs (e.g., time lost from work and other economic activities), and concurrent changes in population mortality and morbidity.
The costs related to cancer health disparities have not been systematically and comprehensively assessed to date. To address this critical need, the Center to Reduce Cancer Health Disparities (CRCHD) of the National Cancer Institute (NCI) convened a Think Tank meeting on December 6–7, 2004. The Think Tank meeting was convened upon recommendation of an ad-hoc group of experts that met prior to this meeting. The meeting consisted of individual presentations from an interdisciplinary team of experts, as well as group discussions and breakout sessions to explore identifi ed issues in greater depth. The key areas of discussion were the total costs of providing cancer care including a critical assessment of the data limitations, challenges in measuring the value of reducing cancer health disparities, and the importance of measuring the cost-effectiveness of interventions to reduce cancer health disparities. At the conclusion of the two-day meeting the participants provided a list of recommendations and future research activities.
This report synthesizes the presentations and discussions of the Think Tank.
Several key conclusions were reached by the Think Tank participants. First, existing data sources have not been used adequately to explore issues related to cancer health disparities and there are no population-level data sources available currently to systematically estimate patient-level costs of these disparities. Improvements in the available data sources may allow for the estimation of overall patient-level cost burdens related to disparities. The data sources can be improved in several ways: by increasing the sample of minority populations (e.g., African Americans, Native Americans/Alaskan Natives; Asian Americans/
Pacifi c Islanders) available for analysis; by developing a national database on cancer epidemiology, outcomes and resource use; by performing linkages among currently available databases and by clearly understanding and adopting national standards (e.g., Office of Management and Budget [OMB] Directive 15)4
on race/ethnicity coding. In addition, decision analytic models can be used to combine effectiveness and cost information from these various data sources to estimate the cost of cancer health disparities. Second, there are signifi cant overlapping determinants of disparity and therefore there is considerable challenge in identifying the cost impact of specifi c determinants. As cancer health disparities are not just an issue Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 9
among racial minority groups, the association between factors such as low socioeconomic status (SES) and cancer health disparities should also be examined (although African Americans have the highest rate of poverty, about 25%, the majority of Americans below the federal poverty level are white).5 Third, since resources available for health care and other services are fi nite, economic evaluations are essential to identify interventions that are cost effective. Interventions that are likely to be cost effective are those that address target populations with high degree of disparities, those interventions that are highly effective, and those that are low cost.
Through breakout group discussions, the participants addressed the economic consequences and costs of cancer health disparities and made numerous recommendations of cost-effective interventions for eliminating these disparities. The recommendations are summarized below in two subsections—research and policy.
Research Recommendations
1. Focus on cancers with modifi able attributes and fund prospective clinical trials to evaluate primary prevention strategies;
2. Study processes to develop improved data sources that will facilitate collection and analysis of cost and outcomes data;
3. Develop better methods and tools to measure disparities; 4. Assess geographic variation and other factors that result in disparities; 5. Include cost-effectiveness assessments in clinical trials and other intervention studies that address disparities;
6. Identify changes in the health care delivery system that can reduce the economic burden of cancer health disparities; and,
7.
Xxxxxxxxxx
Initiate studies to quantify uncompensated cancer care.
Policy Recommendations
1. Improve and expand current insurance coverage;
2. Sponsor health policy research to assess impact of cancer payments on quality of care; 3. Reduce geographic differences through community-level interventions; 4. Eliminate health care network disconnects; and
5. Promote primary prevention for cancer sites where evidence supporting primary prevention exists (e.g., HPV vaccine).
The research topics and recommendations identifi ed by the Think Tank participants will help direct NCI’s efforts in quantifying the economic burden of cancer health disparities and inform policies to eliminate cancer health disparities. A number of specifi c next steps were identifi ed. First, convene a panel of experts to identify a detailed process for improving both the epidemiological and cost data available to study and assess measures to reduce cancer health disparities. Second, sponsor studies to develop better methods to measure cancer health disparities and to evaluate the costs associated with cancer health disparities. Third, include cost-effectiveness assessments in any clinical trials or interventions sponsored by NCI to reduce cancer health disparities. Fourth, coordinate activities with other federal agencies, including Centers for Medicare and Medicaid Services (CMS), to implement initiatives to reduce cancer health disparities.
10 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings
