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Rockville, Maryland 20852

7500 Security Blvd., S3-02-01

Phone: 301-594-4909

Baltimore, MD 21244-1850

Fax: 301-435-9225

Phone: 410-786-7237

Email: washinreg@mail.nih.gov

Fax: 410-786-6511

Email: dmerriman@cms.hhs.gov

Barbara K. Wingrove, M.P.H.

Chief, Health Policy Branch

Traci M. Mitchell

National Cancer Institute

Program Assistant,

6116 Executive Boulevard

Offi ce of the Director

Suite 602, MSC 8341, Rm 6033

National Cancer Institute

Bethesda, Maryland 20892

6116 Executive Boulevard

Phone: 301-451-8269

Suite 602, MSC 8341, Rm 6044

Fax: 301-435-9225

Bethesda, Maryland 20892

E-mail: wingroveb@mail.nih.gov

Phone: 301-435-9222

Fax: 301-435-9225

E-mail: mitchetr@mail.nih.gov

Emanuel A. Taylor, DrPH

Health Scientist Administrator,

Health Policy Branch

National Cancer Institute

6116 Executive Boulevard

Suite 602, MSC 8341, Rm 6036

Bethesda, Maryland 20892

Phone: 301-594-6624

Fax: 301-435-9225

E-mail: taylorem@mail.nih.gov

Nadarajen A. Vydelingum, Ph.D.

Deputy Director,

Center to Reduce Cancer Health

Disparities

National Cancer Institute

6116 Executive Boulevard

Suite 602, MSC 8341, Rm 6045

Bethesda, Maryland 20852-8341

Phone: 301-402-6837

Fax: 301-435-9225

E-mail: vydelinn@mail.nih.gov

Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 51

Appendix B Economic Costs—Discussion Questions

Economic Costs of Cancer Health Disparities

Preliminary Grouping of Questions for the Think Tank

A. What is the total cost of cancer care?

■ What should the total cost of cancer care include? (e.g., see fl owchart, fi g. C-3, p. 62)

■ What economic models are applicable?

■ Cancer care is 5-7% of all health care expenditures. We project cancer to eclipse heart disease as the leading cause of death within a few years. What is the general impact of the disconnection between funding and burden of cancer on the society? What is the impact on sub-populations?

■ Costs attributable to cancer are numerous (e.g., costs related to comorbidity). How can that information be captured and used?

■ Are necessary data available to make economic impact evaluations? If not, how can additional data be collected?

B. What percent of the total cost of cancer care is related to health disparities?

(Note: This might be estimated based on specifi c types of cancer or be reported as a % of GDP)

■ What are the economic costs of fi nding cancers later versus fi nding them earlier (all cancers and/or specifi c cancers)?

■ What additional information exists to inform these issues?

■ How do uncompensated costs, patient out-of-pocket costs, and charitable care relate to disparities?

■ Are necessary data available to make economic evaluations? If not, how can additional data be collected?

■ How many people are included in the “health disparities population(s)”?Specifi cally, how many people are included in the “cancer health disparities” population(s)?

■ What proportion of the “cancer health disparities population(s)” is uninsured? What percentage of them has cancer?

C. What would be the cost of eliminating cancer health disparities?

■ Is equal access to quality, standard cancer care cost-prohibitive or cost-effective for health care systems (both government and private)?

■ Is it economically feasible to treat every American with a cancer-related abnormality?

■ What additional information exists to inform these issues?

■ What economic models are applicable?

■ What are the estimates of costs to reduce delays in defi nitive diagnosis and followup after abnormal fi ndings for all Americans?

■ How can we capture the costs that would occur if the uninsured received early detection and treatment?

■ For both the individual and society, discuss cost>savings, cost = savings, and cost < savings.

Sample costs for individuals include costs associated with morbidity and disability. Sample societal costs are lost productivity and missed opportunity for reduced economic burden of cancer.

■ How best to deal with the moral hazard concept?

■ From the perspective of total health care expenditures, early detection can be seen as increasing costs because screening programs are expensive and life expectancy is increased resulting in greater non-cancer-related health care costs over time. On the fl ip side, advanced screening leads to detection of many cases at stage zero, which can greatly reduce costs of cancer care. Also, there is some over-diagnosis leading to unnecessary treatment.

■ How much can savings in making screening more effi cient offset the costs of wider screening?

■ Much of the differential in colorectal treatment outcomes is associated with surgical technique.

How can structural and cultural factors be overcome to increase access?

52 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings

■ Are metrics to evaluate cost-effectiveness of health benefi ts (e.g., life years saved per dollar spent) too diffi cult and controversial to deal with?

■ What is an appropriate cost-effectiveness threshold for estimating cancer diagnostic and treatment options? Should the threshold(s) be set by type and stage of cancer?

■ Is quality-adjusted life years (QALY) an appropriate and reliable parameter in assessing cost-benefi ts of cancer treatment and diagnostic options?

D. What is the value to America to reduce cancer health disparities?

■ What are the benefi ts of reducing morbidity and mortality from cancer in the United States?

■ Are there economic advantages for primary care centers/hospitals, communities, and our country in creating easy access to cancer care?

■ What are the economic benefi ts of eliminating health disparities in the United States?

■ Is QALY an appropriate and reliable parameter in assessing cost-benefi ts of cancer treatment and diagnostic options?

■ The purpose of the health care system is not to save money but improve health. Should we examine the value gained in reducing cancer health disparities?

■ Are cost-benefi ts of prevention higher in low socioeconomic status (SES) groups than high SES groups?

E. What are the policy implications? What is the cost to change policies?

■ What health care system changes could reduce the costs of cancer care?

■ Can we develop cancer care models to reduce delays in and costs of care while still providing quality, standard cancer care on a timely basis?

■ What research is needed to change policies?

■ Predictions of cost savings associated with improved cancer control are based on longer-term societal costs, but the short-term budget savings may not occur. How can this problem be dealt with so pragmatic changes in policy are made?

■ How can we make cancer interventions more accessible for all?

■ What cross-incentives between parts of the health care system are needed to ensure that stakeholders “do the right thing?”

■ Some stakeholders are reluctant to pay for screening for diseases that are not likely to present until the patient is covered by someone else (e.g., Medicare). What incentives exist to counter this disincentive?

Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 53

Appendix C Economic Costs—Background Paper

Economic Costs of Cancer Health Disparities:

Background Paper for Think Tank

The Center to Reduce Cancer Health Disparities

Harold P. Freeman, M.D., Director

December 6-7, 2004

National Cancer Institute

National Institutes of Health

Department of Health and Human Services

54 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings Economic Costs of Cancer Health Disparities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56

Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56

1. What is the total cost of cancer care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .57

2. What percent of the total cost of cancer care is related to disparities? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .59

3. What would be the cost of eliminating cancer health disparities? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .60

4. What is the value to America of reducing cancer health disparities? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .61

5. What are the policy implications of reducing cancer health disparities? . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62

6. What is the cost to change policies to reduce cancer health disparities? . . . . . . . . . . . . . . . . . . . . . . . . . . . . .63

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .63

Types of Health Care Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .63

Sources of Health Care Cost Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65

Measuring Costs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .68

List of Appendix Figures

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

Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 55

Economic Costs of Cancer Health Disparities

Because of the critical importance of eliminating or at least reducing cancer health disparities, there is a need to better understand the economic and human costs of such disparities to the nation. To address this critical need, the Center to Reduce Cancer Health Disparities (CRCHD) of the National Cancer Institute (NCI) is convening a Think Tank meeting December 6–7, 2004, to bring together health economists, cancer care providers, federal and private insurers, and policy experts to explore the economic costs to the nation of cancer health disparities and their implications for cancer control. The purpose of this document is to provide general background information, stimulate new and creative thinking about the economic costs of cancer health disparities, and share ideas about eliminating or reducing such disparities. This paper is not intended to defi ne all the issues or restrict innovative thinking. In considering the subject of economic costs of cancer health disparities, Think Tank participants are encouraged to “think outside the box.”

Overview

A critical disconnect exists between cancer research discovery and development and delivery of care to cancer patients. This disconnect between the phase when new knowledge is discovered and new interventions developed (i.e., what we know) and cancer care delivery, where the benefi ts of new discover-ies should be delivered to the public (i.e., what we do), is a key factor leading to an unequal and unjust burden of cancer in our society. Receipt of cancer care is often delayed for some racial and ethnic minorities, people with low socioeconomic status (SES), those who live in rural and inner-city areas, and other medically underserved groups. Closing the gap between cancer research discovery/development and care delivery will help reduce cancer health disparities in America.

Although few individuals in America who are diagnosed with cancer go untreated, delays in receiving screening, diagnosis, and treatment for cancer are experienced to a greater degree by underserved communities, including some racial and ethnic minorities, the poor, those lacking health insurance coverage, and rural and inner-city communities.1 These delays, in addition to cultural barriers, poverty, social injustice, and decreased access to all phases of cancer care compound disparities in care and result in higher cancer morbidity and mortality in those populations. A complex set of social, economic, cultural, APPENDIX FIGURE C-1 Causes of Health Disparities

Causes of Health Disparities

Poverty/Low

Economic Status

Social Injustice

Culture

Prevention

Early

Diagnosis/

Treatment

Post Treatment/

Survival

Detection

Incidence

Quality of Life

and Mortality

56 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings and health system factors are believed to drive delays in cancer care ( Appendix Figure C-1). This is highlighted by a recent study on the racial and socioeconomic determinants of cancer health dispari-ties2, where 5-year survival for all cancers combined was 10% lower among persons living in poor areas compared to more affl uent U.S. Census tracts.

The National Cancer Institute (NCI) has a legislative mandate to reduce the burden of cancer. In 2001, NCI issued a nationwide challenge “to eliminate the suffering and death due to cancer by 2015”3. Some racial and ethnic minorities and medically underserved populations bear a major portion of that suffering and death. The scientifi c community has a critical and unique role in addressing the moral and ethical dilemmas posed by the unequal burden of cancer in our society. We know that complex interactions among genetic susceptibilities and the risk imparted by individual and group behaviors, age, and social and environmental circumstances determine health throughout an individual’s lifespan, including who becomes ill, who survives disease, and who maintains good quality of life after diagnosis and treatment.

However, the economic costs associated with these documented cancer health disparities have not been fully explored. In the United States, approximately 5% (7%, including screening) of total medical expenditures are due to cancer; while over 20% of all deaths are due to cancer.4

As Americans age and the absolute number of people treated for cancer increases, lack of access to timely and appropriate quality care is a growing problem. Barriers to cancer care lead to a cascade of problems that result in increased cancer care costs for the nation. For example, cancers diagnosed at Stage II or III are the most expensive to treat.5 Cancer cases that are the least expensive to treat are diagnosed at either very early (in situ or Stage I) or very late (Stage IV) stages. Addressing the gap between discovery and delivery may reduce the costs of cancer care.

The Think Tank is being asked to look at the many components of economic costs and how scarce resources of money and time could be allocated to maximize health and well-being. Potential outcomes of the Think Tank include: identifi cation of current evidence about the costs of cancer health disparities; assessment of currently available cost data and data needs; an estimate of the costs of providing cancer care (including preventive services, followup of abnormalities, and treatment) for all Americans who are currently unable to fully access standard cancer care; cost-effective strategies for improving timely access to care across the cancer continuum; and the economic benefi ts of eliminating disparities and improving timely access to cancer care. Based on fi ndings from the Think Tank, recommendations for future research programs and policies will be made to the NCI/NIH and other federal agencies. Products from the Think Tank may include an Executive Summary of the Think Tank meetings, a detailed report on Think Tank fi ndings and recommendations, scientifi c publications, and plans for future actions.

For discussion purposes, the remainder of this paper is divided into sections addressing the questions listed below. Members of the Think Tank are asked to have a dialogue that will include, but not be limited to, these topics.

1. What is the total cost of cancer care?

2. What percent of the total cost of cancer care is related to disparities?

3. What would be the cost of eliminating cancer health disparities?

4. What is the value to America of reducing cancer health disparities?

5. What are the policy implications of reducing cancer health disparities?

6. What is the cost to change policies to reduce cancer health disparities?

1. What is the total cost of cancer care?

Currently, health care costs are estimated to be 15% of the gross domestic product (GDP). Total spending for cancer care has continually increased over the last 30 years; however, the proportion of cancer spending to all health care expenditures has remained stable (i.e., 4.4% to 6% of total health expenditures).4 Direct costs of cancer treatment accounted for about $41 billion in 1995, the most recent year Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 57

for which there is information.6 This is just under 5% of total U.S. spending for medical treatment. The overall costs of treating cancer more than doubled between 1985 and 1995. These estimates of cost do not include out-of-pocket expenditures or prevention and screening costs. For example, Medicare does not cover certain cancer care expenses, such as common orally administered cancer medicines. Out-of-pocket costs add up to 10% to the estimates of the total cost of cancer treatment. Indirect costs, which include losses in time and economic productivity resulting from cancer-related illness and death, are not included in the above estimates. The total economic burden of cancer in 1996, including direct and indirect costs, was estimated to be $143.5 billion.6

The cost of cancer treatment varies by the type of cancer. Using data from the linked databases of Surveillance, Epidemiology, and End Results (SEER) and Medicare, expenditures for 1995 through 1998

were examined for the 13 most common cancers.5 Treatment costs for the four most common cancers (i.e., breast, colorectal, lung, and prostate) were similar and ranged from 11% to 13% of total cancer expenditures. This represented $4.6 to $5.4 billion per year. However, the average cost of treatment for an individual with one of these 13 cancers varied widely, with individual average Medicare payments in the fi rst year following diagnosis ranging from $3,117 for melanoma to $32,340 for ovarian cancer.6

Cost also varies by the point in the continuum of cancer care at which expenditures are measured ( Appendix Figure C-2). For example, fi rst-year costs of treatment are higher for lung and colorectal cancers because screening is not commonly used in their detection.5 If screening for colorectal cancer were performed as recommended, extensive and costly treatment of advanced-stage disease could be reduced.

To fully answer any questions about the economic costs of cancer, it is important to identify types, sources, and measures of cost. Unanswered questions about measurement of cancer costs include: how do we APPENDIX FIGURE C-2 The Cancer Care Continuum19

Risk Assessment Primary PreventionScreening/Detection Diagnosis

Treatment

Recurrence Surveillance

End-of-Life Care

Failure to

Primary

Failure in

Failure during

Failure of

Failure in

Failure in

Identify Need

Prevention

Detection

Diagnostic

Treatment

Surveillance

Surveillance

to Screen or

Failure

Evaluation

Counsel

Failure in

Failure to

Failure

Failure during

Failure to

Failure to

Access to

Screen

during

Followup of

Followup

Access Care

Care

Followup of

Diagnostic/

Surveillance

Abnormal

Treatment

Plan

Results

Plan

Potential Failures During Process of Care

58 Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings measure the economic costs of fi nding cancers later versus fi nding them earlier? Are different methods used to look at the cost for all cancers compared to the cost for specifi c cancers? What is the appropriate cost-effectiveness threshold for estimating cancer diagnostic and treatment options? Should this threshold be set by type and stage of cancer? Are QALYs appropriate and reliable parameters for assessing costs-benefi ts of cancer treatment and diagnostic options?

2. What percent of the total cost of cancer care is related to disparities?

One of the basic questions that must be answered in order to measure the cost of disparities is: how does one defi ne cancer health disparities? The NCI Center to Reduce Cancer Health Disparities uses the following defi nition:

“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, or inequalities, occur when members of certain population groups do not enjoy the same health status as other groups. Disparities are most often identifi ed along racial and ethnic lines, showing that African Americans, Hispanics, Native Americans, Asian Americans, Alaska Natives, and whites have different disease rates and survival rates. But disparities also extend beyond race and ethnicity. For example, cancer health disparities can involve biological, environmental, and behavioral factors, as well as differences noted on the basis of income and education.”7

Cancer health disparities are often compounded by overlapping barriers to care. Underserved groups include some racial and ethnic minorities, people with low SES, those living in rural or inner-city areas, the underinsured and uninsured, and those with low health literacy. For example, in the United States, Hispanics have the largest percentage of uninsured persons, followed by blacks and then, non-Hispanic whites. Many low-income cancer patients not only live in rural or remote areas, but also are poor. Undocumented workers and their families rarely have insurance and often have low incomes. This can increase the complexity of measuring specifi c disparities and planning interventions. These overlapping categories also raise the issue of how many people are included in the health disparities population(s).

Current published research has not estimated the percentage of cancer care costs that are due to health disparities. However, several studies have found an association between late-stage cancer diagnosis and lack of insurance, low SES, and cultural barriers.8, 9 When cancers are diagnosed at Stage II or III, the cost of treatment is more expensive than for cases diagnosed at either very early (in situ or Stage I) or very late stages (Stage IV).5 In addition, uncompensated care, which includes charitable care, “safety net” services, and other types of uncompensated care provided by physicians, clinics, hospitals, and other providers, is often associated with cancers detected at late stages through emergency room visits by the poor. Reliable data on the economic cost of this uncompensated care are lacking.10

One method used to obtain more detailed cost data on health disparities is to link databases such as cancer registries (e.g., the SEER cancer registry) and administrative databases (e.g., Medicare). The SEER-Medicare linked database is the major source for estimating cancer site-specifi c costs. Costs can be tracked longitudinally so they can be determined for different phases of cancer treatment.5 As an example, using the SEER-Medicare linked database, researchers reported that both total and cancer-related direct costs for treating black women were signifi cantly higher than for treating white women ($320 higher mean monthly cost), even after controlling for stage and treatment in all phases of care.11 The higher costs among black women may refl ect differences in care after a cancer diagnosis and/or unmeasured preexist-ing health problems.

Economic Costs of Cancer Health Disparities: Summary of Meeting Proceedings 59

Changes in insurance status also give an indication of the effects of disparities on receipt of cancer services. An example is a study that examined the impact of Medicare coverage on the use of basic clinical services for previously uninsured adults.12 The study reported that the difference between continu

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