6
Employment, Insurance, and Economic Issues

A history of cancer can have a significant impact on employment opportunities and may also affect the ability to obtain and retain health and life insurance. In addition, financial difficulties may arise because cancer survivors’ health-related work limitations may necessitate a reduced work schedule. The economic burden of cancer can be compounded by high out-of-pocket expenses for prescription drugs, medical devices and supplies, and expenses related to co-insurance and copayments. These employment, insurance, and economic issues are not necessarily limited to the cancer survivor—they may extend to family members, limiting access to insurance and posing a financial burden. The extent of these socioeconomic problems and current legal remedies to address them are described in this chapter, as are potential programmatic, educational, legislative, and advocacy responses.1 Selected federal and state programs are described that are relevant to cancer survivors, including the Medicare prescription drug program that will be implemented in 2006; a state Medicaid option available since 2000 to provide poor and uninsured women with coverage for treatment and follow-up of breast and cervical cancer; recent federal investments in state high-risk insurance pools that provide insurance coverage to people who cannot get insurance because of poor health; and federal income replacement programs through the Social Security Administration for individuals too disabled to work.

1  

This chapter is based, in part, on a background paper prepared in 2002 by Barbara Hoffman for the National Cancer Policy Board, Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition 6 Employment, Insurance, and Economic Issues A history of cancer can have a significant impact on employment opportunities and may also affect the ability to obtain and retain health and life insurance. In addition, financial difficulties may arise because cancer survivors’ health-related work limitations may necessitate a reduced work schedule. The economic burden of cancer can be compounded by high out-of-pocket expenses for prescription drugs, medical devices and supplies, and expenses related to co-insurance and copayments. These employment, insurance, and economic issues are not necessarily limited to the cancer survivor—they may extend to family members, limiting access to insurance and posing a financial burden. The extent of these socioeconomic problems and current legal remedies to address them are described in this chapter, as are potential programmatic, educational, legislative, and advocacy responses.1 Selected federal and state programs are described that are relevant to cancer survivors, including the Medicare prescription drug program that will be implemented in 2006; a state Medicaid option available since 2000 to provide poor and uninsured women with coverage for treatment and follow-up of breast and cervical cancer; recent federal investments in state high-risk insurance pools that provide insurance coverage to people who cannot get insurance because of poor health; and federal income replacement programs through the Social Security Administration for individuals too disabled to work. 1   This chapter is based, in part, on a background paper prepared in 2002 by Barbara Hoffman for the National Cancer Policy Board, Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition EMPLOYMENT Impact of Cancer on Survivors’ Employment Opportunities There are an estimated 3.8 million working-age adults (ages 20 to 64) with a history of cancer as of 2002, and consequently more cancer survivors are in the workplace now than ever before, (NCI, 2005). The proportion of individuals with a history of cancer rises with age, from 1 percent among individuals ages 40 to 44 to 8 percent among those age 60 to 64 (see Chapter 2). Consequently, many employers have had to address issues related to the reintegration of workers following their treatment and the alteration of work schedules and environment to accommodate any lingering cancer-related impairments. Most cancer survivors who worked before their diagnosis return to work following their treatment (Spelten et al., 2002). In fact, with the advent of effective interventions to curb the side effects of cancer therapies and an increased reliance on outpatient care, some individuals are able to work throughout their cancer treatment (Messner and Patterson, 2001). Retaining one’s employment status has obvious financial benefits and is often also necessary for health insurance coverage, self-esteem, and social support (Voelker, 1999; Spelten et al., 2002). On the other hand, cancer may prompt retirement from an undesirable job or launch a search for a new career that is more satisfying personally, but less lucrative. Work after cancer must therefore be assessed in the context of an individual’s priorities and values, rather than exclusively using social or economic metrics (Steiner et al., 2004). Employers, supervisors, and co-workers may assume that persons with cancer are not able to perform job responsibilities as well as they did before the diagnosis. They may also perceive them as a poor risk for promotion. These misconceptions can lead to subtle or blatant discrimination in the workplace (Messner and Patterson, 2001). Cancer survivors have reported problems in the workplace that include dismissal, failure to hire, demotion, denial of promotion, undesirable transfer, denial of benefits, and hostility (NCCS and Amgen, undated; Fesko, 2001; Hoffman, 2004b). Studies conducted prior to the passage of comprehensive employment discrimination laws suggest that survivors of cancer encountered substantial employment obstacles (Mellette, 1985; Hoffman, 1989, 1991; Bordieri et al., 1990; Brown and Ming, 1992). Federal and state laws passed in the early 1990s have helped to ease problems related to job discrimination. The most important is the Americans with Disabilities Act (ADA), which protects disabled workers. In addition, the Health Insurance Portability and Accountability Act (HIPAA) and the Consolidated Omnibus Budget Reconciliation Act (COBRA) have

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition helped workers move from one job to another without loss of health insurance. Since the enactment of these laws (and their enforcement), employment practices have improved and employees have gained some protections (Hoffman, 1999). Common accommodations made for those living with illnesses include reduced and flexible schedules. Such flexibility is increasingly common in the workplace to meet the needs of employees with family responsibilities. However, providing flexibility in production or assembly line scheduling can be more difficult for “blue collar” workers (Voelker, 1999). Even with these new protections and improvements in employer practice, contemporary workers may lose employment because of cancer (Box 6-1). To fully understand the impact of cancer on work outcomes, one would BOX 6-1 Examples of Cancer-Related Job Loss Allison Yowell, a seventh-grade teacher in a Virginia public school, was forced from her job when her Hodgkin’s disease recurred. Although her prognosis was good, school officials notified her that she must resign, or face firing, because she had used all her sick days. As a recent hire, she was ineligible to request leave without pay. It was recommended that she resign before being terminated to avoid marring her teaching record. She submitted her resignation, but was reinstated only after adverse publicity regarding the case. Ms. Yowell, who wanted 4 months of leave without pay, couldn’t take advantage of the federal Family and Medical Leave Act, which grants 12 unpaid weeks per year, because it applies only after an employee has worked a full year. John Magenheimer, who had headed a research laboratory at a major company, was recovering from surgery, chemotherapy, and radiation treatment for cancer when he learned that his company had fired him and that his health, life, and dental insurance had been terminated. He and 180 other employees of the company who had been placed on long-term disability were fired. Most companies used to pay health benefits for the long-term disabled until they were 65, but as health insurance costs and the number of disabled employees have climbed, more companies are firing them. According to a survey of 723 companies in 2002, 27 percent had a policy to dismiss employees as soon as they went onto long-term disability and 24 percent dismissed them at a set time thereafter, usually 6 to 12 months. Only 15 percent of companies had a policy to keep the disabled on as employees with benefits until age 65. Mr. Magenheimer had the option of continuing his health insurance through a federal law known as COBRA, and as a disabled worker he could purchase Medicare coverage after 18 months. Both kinds of coverage cost thousands of dollars a year, which many disabled workers can ill afford. SOURCES: Pereira (2003); Laris (2005a,b).

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition ideally have results from studies that had the following six characteristics (Steiner et al., 2004): Inclusion of cancer survivors that represented the entire population of U.S. cancer survivors. Many studies are based on survivors followed at one cancer center, or who are from particular geographic areas. Their employment experience may not reflect that of the nation. Ideally, survivors would be selected for study from population-based cancer registries. Designed to provide a prospective and longitudinal look at work outcomes so that both short-term and long-term work outcomes could be assessed and the dynamic nature of employment could be understood. Include assessments of work, including information on the type, amount, content, physical demands, cognitive demands, and attitudes about work. Include assessments of the impact of cancer on the economic status of the individual and the family. Identify moderators of work return and work function, particularly those that are susceptible to intervention (e.g., availability of health insurance and disability benefits to offset lost income). Include a cohort of survivors that is sufficiently large to allow multivariate statistical analysis and that provides information on important groups (e.g., minority groups, cancer types). The committee reviewed the literature published in the past 10 years on the employment experience of U.S. cancer survivors who were studied in 1992, the year the ADA took effect, or later.2 Most of the studies reviewed had some, but rarely all, of the ideal attributes just described. There are few prospective studies of cancer’s effects on employment, but those that are available provide important insights into how interventions could be designed to assist cancer survivors. In one prospective study, women with invasive breast cancer were less likely to work 6 months following diagnosis relative to a control sample of women. Breast cancer survivors who remained working worked fewer hours than women in the control group (Bradley et al., 2005a). At 12 months, however, many women who had stopped working had returned to work (Bradley, 2004). The nonemployment effect of breast cancer diagnosis and treatment at 6 months was twice as large for African-American women. Similar findings were evident among men with prostate cancer. Here, 28 2   Studies of the experience of cancer survivors from other countries are excluded because differences in employment benefits and policies likely affect return-to-work behaviors.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition percent of men were not employed 6 months following diagnosis but, at 12 and 18 months, survivors’ employment was statistically not different from controls (Bradley, 2004). At 12 months, 26 percent of men with prostate cancer reported that cancer interfered with their ability to perform tasks that involved physical effort (Bradley et al., 2005b). Up to 16 percent of men said that they noticed changes in their ability to perform cognitive tasks (e.g., concentrate, keep up with others, learn new things). The implication of these findings is that interventions to assist survivors who stop working (e.g., income replacement programs, information about access to health insurance) are needed within 6 months of diagnosis. Workplace reintegration programs may be most needed through the year following diagnosis. Nearly one out of five cancer survivors reported cancer-related limitations in ability to work when interviewed 1 to 5 years following their diagnosis as part of one of the largest cross-sectional studies to date (Short et al., 2005b). Nine percent were unable to work at all. Labor force participation dropped by 12 percentage points from diagnosis to follow-up and about two-thirds of survivors who quit working attributed the change to cancer. Other studies have found the drop in employment following cancer to be similar in magnitude. For example, a 10 percentage point greater decline in employment was noted among breast cancer survivors as compared to women without breast cancer (Bradley et al., 2002a,b). The impact of cancer on employment has not been well studied across all types of cancer. However, work-related outcomes have been shown to be significantly worse for cancers of the central nervous system, hematologic cancers (Short et al., 2005b), and cancer of the head and neck. In one study, 52 percent of survivors of head and neck cancer who had worked before their diagnosis were disabled by their cancer treatment and could no longer work when assessed, on average, more than 4 to 5 years following their diagnosis (Taylor et al., 2004). Nearly three-quarters (74 percent) of survivors considered potentially cured of acute myelogenous leukemia (excluding those receiving allogenic marrow transplants) returned to full-time work according to a long-term follow-up study (median of 9.2 years from first or second complete remission) (de Lima et al., 1997). Less than a third of those who were not working cited physical limitation as the reason. Other studies of cancer survivors have also shown that most cancer survivors continue to work, but that a minority have limitations that interfere with work. Of those working at the time of their initial diagnosis, 67 percent of survivors of lung, colorectal, breast, or prostate cancer were employed 5 to 7 years later when interviewed in 1999 (Bradley and Bednarek, 2002). Survivors in this study who stopped working did so because they retired (54 percent), were in poor health or disabled (24 percent), quit (4 percent), their business closed (9 percent), or for other reasons

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition TABLE 6-1 Limitations Imposed by Cancer and Its Treatment on Patients Currently Working At least some of the time task requires: Cancer Interfered with Work Performance (percentage) Physical tasks 18 Lift heavy loads 26 Stoop, kneel, or crouch 14 Concentrate for long periods of time 12 Analyze data 11 Keep pace with others 22 Learn new things 14 SOURCE: Adapted from Bradley and Bednarek (2002). (9 percent). Many employed survivors worked in excess of 40 hours per week, although some reported various degrees of disability that interfered with job performance. When work required lifting heavy loads, for example, 26 percent of subjects reported that cancer interfered with their performance (Table 6-1). Other investigators point to the vulnerability of employees with jobs involving manual labor. In one study, type of occupation was the main determinant of whether individuals were employed after diagnosis. Although 76 percent of respondents indicated that they were working at the time of diagnosis and 82 percent said they wanted to work full- or part-time, only 56 percent were working at the time of the study (Rothstein et al., 1995). Laborers were most likely, and professionals least likely, to have some of their job duties reassigned upon their return to work. Relatively few studies have examined the effect of cancer on income in the context of the family household. In one study that studied such effects, breast cancer survivors who were working at the time of their diagnosis experienced higher rates of functional impairment and significantly larger reductions in annual earnings over the 5-year study period than did working control subjects. These losses arose mostly from reduced work effort, not changes in pay rates. Changes in total household earnings were lower for survivors, suggesting the presence of family adjustments to the disease. However, no significant differences were detected between the groups in changes in total income or assets over the study period (Chirikos, 2001; Chirikos et al., 2002a,b). This study suggests that cancer can have an economic impact on the entire family, requiring compensatory employment behaviors on the part of family members to maintain earnings. Analyses of national health surveys have provided some information on

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition the effects of cancer on employment. According to analyses of the 2000 National Health Interview Survey (NHIS), cancer survivors were found to have poorer outcomes across all employment-related burden measures relative to matched control subjects (Yabroff et al., 2004). Cancer survivors were less likely than control subjects to have had a job in the past month. Furthermore, they were more likely to be unable to work because of health, more limited in the amount or kind of work because of a health problem, and had more days lost from work in the past year. The decrements in productivity were generally consistent across tumor sites. When analyzed by time since diagnosis, a higher percentage of survivors diagnosed in the past year also reported having jobs than survivors in any of the other time-since-diagnosis intervals. However, this group of survivors also had the most reported work loss days. This analysis included information on cancer survivors of all ages.3 In an analysis of three years of NHIS data (1998 to 2000) limited to adults ages 18 to 64, nearly one in six individuals (17 percent) with a history of cancer reported that they were unable to work because of a physical, mental, or emotional problem (Hewitt et al., 2003). An additional 7.4 percent of cancer survivors were limited in the kind or amount of work they could do. This level of work limitation exceeded that of working-age individuals without a history of cancer (Figure 6-1). In an attempt to isolate cancer-related effects, investigators compared individuals reporting a history of cancer but no other chronic disease to individuals without a history of cancer or with no other chronic illness. Using multivariate analyses to control for potentially confounding factors (i.e., age, sex, race/ethnicity, educational attainment, health insurance status, and marital status), individuals with cancer but no other chronic disease were found to be three times more likely to be unable to work than individuals without a history of cancer and reporting no chronic illness. The likelihood of work limitation was much higher among cancer survivors who also reported comorbid chronic diseases (i.e., cardiovascular disease, diabetes, emphysema, ulcer, weak/failing kidneys, liver condition). They were 12 times more likely to be unable to work relative to those without cancer or other chronic illnesses. The NHIS in 1992 included a supplement funded by the National Cancer Institute (NCI) with a section on issues related to cancer survivorship. Individuals who reported a recent history of cancer (within the past 10 years) were asked about changes in health or life insurance coverage and cancer-related problems with employment. Nearly one in five (18.2 percent) individuals who worked immediately before or after their cancer was 3   Half (51 percent) of the sample were aged 65 and older.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition FIGURE 6-1 Work limitations by age and self-reported history of cancer, 1998–2000. SOURCE: Hewitt et al. (2003). diagnosed (but who were not self-employed) reported at least one of the following problems (Hewitt et al., 1999): Believed they could not take a new job because of a change in insurance related to cancer (13.2 percent). Believed they could not change jobs because of cancer (7.8 percent). Faced on-the-job problems from an employer or supervisor directly related to their cancer (4.5 percent). Refrained from applying for a new job because they did not want their medical records made public (4.4 percent). Were fired or laid off from their job because of their cancer (3.7 percent). Kessler and colleagues, in an analysis of the MacArthur Foundation Midlife Development in the United States (MIDUS) survey, found 88 percent of employed people who develop cancer remain at work after receiving their diagnosis and during at least some part of their treatment (2001). Of all of the conditions examined, cancer had the highest reported prevalence of any 30-day work impairment. Two-thirds (66 percent) of those reporting

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition cancer reported such impairment as compared to 48 percent of those with heart disease and 39 percent of those with arthritis.4 An analysis of symptoms reported on the survey suggested that fatigue may have accounted for much of the impact of cancer on work impairment. Whether or not cancer survivors disclose their diagnosis once they return to work has not been well researched. In one study of colorectal cancer patients who had been employed before their diagnosis, most (89 percent) returned to work and, of those returning to work, most disclosed their cancer history to employers (81 percent) and co-workers (85 percent) and did so for personal and work-related reasons (Sanchez and Richardson, 2004). Communication with physicians about work return decisions may have facilitated cancer history disclosure. Such high disclosure rates could be accounted for by the fact that anyone who requests a formal leave of absence from work must disclose their cancer diagnosis. Discussions with physicians about work return decisions should take place prior to the initiation of treatment because the acute effects of treatment may affect one’s ability to work full time. Some patient’s treatment decisions may be influenced by employment considerations. From an employer’s perspective, cancer represents a potential health and productivity burden. In addition to medical costs that may be borne by employers, there are concerns about absenteeism from work, disability program use, workers’ compensation program costs, turnover, family medical leave, and on-the-job productivity losses. Consequently, the cost of cancer to employers greatly exceeds the cost of health insurance alone (Lee, 2004). Cancer accounts for about 10 percent of an employer’s or insurer’s annual medical claim costs, 10 percent of short-term disability claim costs, and 10 percent of long-term disability costs, according to a recent analysis (Pyenson and Zenner, 2002). One study that examined physical and mental health conditions contributing to employer health and productivity cost burden found that cancer ranked relatively low in burden relative to other chronic conditions such as heart conditions, diabetes mellitus, chronic obstructive pulmonary disease, low back disorders, trauma, sinusitis, and renal failure (Goetzel et al., 2003).5 Other investigators found annual health care and disability costs for persons with cancer to be about five times 4   Such high levels of impairment could be accounted for by the reporting timeframe—individuals were asked about chronic health conditions that they had experienced or been treated for in the past 12 months. Individuals could therefore have been reporting on their experiences during or shortly after treatment. 5   These 1999 rankings took into account health care payments, absenteeism, and short-term disability and were based on a multiemployer database that links medical, prescription drug, absence, and short-term disability data.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition higher than for their counterparts without cancer (Barnett et al., 2000).6 Medical conditions not directly related to cancer accounted for about half of the total excess expenditures for patients with cancer. For example, infections, asthma, and dental procedures, although not immediately thought of as being associated with cancer, cost considerably more among cancer patients than controls. In summary, a number of studies have been conducted to gauge the effect of cancer on employment. However, it is difficult to judge overall effects because these studies have: Included individuals with different types of cancer and survival probabilities; Assessed employment patterns at different lengths of time following treatment; Had relatively low participation rates, with healthier individuals enrolling in studies more readily than less healthy individuals; Examined employment at one point in time, possibly obscuring important transitions in and out of work over time; Been conducted in different parts of the country with varying employment patterns; and Had no control group or used control groups that may not have been well matched to subjects. Without adequate control subjects in such studies, it is difficult to distinguish declines in employment following cancer from those that might be expected for other reasons. Information from the one prospective study that has been conducted indicates that employment is most affected in the period immediately following treatment, suggesting that programs, policies, and financial assistance are critical at this time. The type of occupation appears to be a key determinant of employment difficulties, with workers whose jobs involve physical labor most adversely affected. In terms of cancer site, cancers of the central nervous system, hematologic cancers, and head and neck cancer seem to be associated with poorer work outcomes. The finding from one of the largest cohort studies, that roughly 20 percent of people working at the time of their diagnosis face cancer-related work limitations 2 to 3 years later, is consistent with results of cross-sectional national survey research. This research suggests that cancer is one of several chronic conditions that markedly increase the likelihood of work-related disability. 6   The costs of cancer to a major U.S. employer were estimated in an analysis of medical, pharmaceutical, and disability claims data from 1995 to 1997. Investigators found cancer accounting for 6.5 percent of the corporation’s total health care cost.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Despite laws allowing portability of health insurance (see section on health insurance below), individuals with a history of cancer report in recent studies of being afraid to change jobs because of concerns about continuation of health insurance. More than 25 percent of cancer survivors in Short and colleagues’ recent study expressed such fears (Short et al., 2005a). Most individuals returning to work appear to inform their supervisors and colleagues of their cancer for both personal and work-related reasons. Relatively few (5 percent) cancer survivors faced on-the-job problems from an employer or supervisor directly related to their cancer, according to survey research conducted in the early 1990s. However, at this time, 4 percent of cancer survivors employed before their diagnosis said they were fired or laid off from their jobs because of their cancer. Population-based, prospective cohort studies with adequate control groups are needed to better understand the effects of cancer on employment and in order to observe transitions in and out of the work force over time following diagnosis. Also needed are studies of work-related outcomes other than employment status alone (e.g., full-time versus part-time, job mobility, limitations in ability to work) and systematic assessments of employment differences among cancer survivors, as well as between cancer survivors and noncancer control groups. Efforts to identify remediable risk factors and interventions to ameliorate the deleterious effects of cancer on employment are also needed. Investigators have proposed a conceptual model of work after cancer and have defined important work outcomes that should be monitored to improve our understanding of the relationships among cancer, quality of life, and work outcomes (Steiner et al., 2004). Cancer Survivors’ Current Employment Rights Although cancer survivors do not have an unqualified right to obtain and retain employment, they do have the right to freedom from discrimination and to be treated according to their individual abilities. Four federal laws—the ADA, the Family and Medical Leave Act (FMLA), the Employee Retirement and Income Security Act (ERISA), and the Federal Rehabilitation Act—provide cancer survivors with some protection against employment discrimination. Americans with Disabilities Act The Americans with Disabilities Act of 1990 prohibits certain employers from discriminating against individuals with disabilities (see Box 6-2). A qualified individual with a disability is protected by the ADA if he or she can perform the essential functions of the job. Under the ADA, a disability is a major health impairment that substantially limits the ability to do

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition MEDICAL EXPENDITURE PANEL SURVEY (MEPS) Information on cancer-related medical expenditures is based on analyses of 2 years of data from MEPS, 2001–2002. MEPS is co-sponsored by the Agency for Healthcare Research and Quality (AHRQ) and the National Center for Health Statistics (AHRQ, 2005). The household component of MEPS is a nationally representative survey of the U.S. civilian noninstitutionalized population that collects medical expenditure data at both the person and household levels. The sample for the household component of MEPS was selected from respondents to the NHIS. MEPS is a panel survey, and data are collected through a precontact interview that is followed by a series of five rounds of interviews over 2 years. Two calendar years of medical expenditure and utilization data are collected from each household and captured using computer-assisted personal interviewing. A history of cancer is not directly asked about as part of MEPS. Instead, the respondent is asked, “We’re interested in learning about health problems that may have bothered you since [date].” A history of cancer would be identified if the respondent identified cancer as a condition that had bothered him or her during the reference period. A cancer history would also be identified if a person sought care for cancer, had a bed day or disability day attributable to cancer, or took a prescription medicine for cancer (Personal communication, K. Beauregard, AHRQ, March 2, 2005). Medical conditions reported during the interview were coded using International Classification of Disease, 9th Revision, Clinical Modification (ICD-9-CM) codes. For analyses presented in this chapter, individuals reporting superficial skin cancer were excluded. MEPS may not identify individuals with a history of cancer if they do not have symptoms, are not seeking care for cancer, or are not taking cancer-related prescription medicines. Expenditures in MEPS refer to payments for health care services. These expenditures are defined as the sum of direct payments for care provided during the year, including out-of-pocket payments and payments by private insurance, Medicaid, Medicare, and other sources. Payments for over-the-counter drugs, alternative care services, and phone contacts with medical providers are not included in MEPS total expenditure estimates. Expenditure data are from a sample of medical and pharmaceutical providers that provided care and medicines to individuals interviewed for the survey. These data from providers are used to improve the overall quality of expenditure data. In addition to expenditures for total health services, expenses are classified into eight broad types of services and equipment: hospital inpatient, emergency room, outpatient services, medical provider visits, prescribed medicines, dental services, home health services, and other medical equipment and services. These categories are described below:

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Hospital inpatient services—This category includes room and board and all hospital diagnostic and laboratory expenses associated with the basic facility charge and payments for separately billed physician inpatient services. Emergency room (ER) services—This category includes hospital diagnostic and laboratory expenses associated with the ER facility charge and payments for separately billed inpatient services. Outpatient services—This category includes outpatient diagnostic and laboratory expenses associated with the basic facility charge and payments for separately billed inpatient services. Medical provider visits—This category covers expenses for visits to a medical provider seen in an office-based setting. Prescribed medicines—This category includes expenses for all prescribed medications that were initially purchased or otherwise obtained during the calendar year as well as any refills. Dental services—This category covers expenses for any type of dental care provider, including general dentists, dental hygienists, dental technicians, dental surgeons, orthodontists, endodontists, and periodontists. Home health services—This category includes expenses for care provided by home health agencies and independent home health providers. Agency providers accounted for most of the expenses in this category. Other medical equipment and services—This category includes expenses for eyeglasses, contact lenses, ambulance services, orthopedic items, hearing devices, prostheses, bathroom aids, medical equipment, disposable supplies, and other miscellaneous items or services that were obtained, purchased, or rented during the year. Source-of-Payment Categories Estimates of sources of payment are classified as follows: Out of pocket by user or family. Private insurance—Includes payments made by insurance plans covering hospital and medical care (excluding payments from Medicare, Medicaid, and other public sources). Payments from Medigap plans or CHAMPUS and CHAMPVA (Armed Forces-related coverage) are included. Payments from plans that provide coverage for a single service only, such as dental or vision coverage, are not included. Medicare—A federally financed health insurance plan for the elderly, persons receiving Social Security disability payments, and most persons with end-stage renal disease. Medicare Part A, which provides hospital insurance, is automatically given to those who are eligible for Social Secu-

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition rity. Medicare Part B provides supplementary medical insurance that pays for medical expenses and can be purchased for a monthly premium. Medicaid—A means-tested government program jointly financed by federal and state funds that provides health care to those who are eligible. Program eligibility criteria vary significantly by state, but the program is designed to provide health coverage to families and individuals who are unable to afford necessary medical care. Other public programs—Includes payments from the Department of Veterans Affairs (excluding CHAMPVA); other federal sources (Indian Health Service, military treatment facilities, and other care provided by the federal government); various state and local sources (community and neighborhood clinics, state and local health departments, and state programs other than Medicaid); and Medicaid payments reported for people who were not enrolled in the Medicaid program at any time during the year. Other sources—Includes payments from Workers Compensation; other unclassified sources (automobile, homeowner’s, or liability insurance, and other miscellaneous or unknown sources); and other private insurance (any type of private insurance payments reported for people without private health insurance coverage during the year as defined in MEPS). REFERENCES ABA (American Bar Association). 2004. Breast Cancer Pro Bono Legal Referral Services. [Online]. Available: http://www.abanet.org/women/probono.html [accessed September 24, 2004]. Abbe B (CA, Inc.). 2005. Overview—State High Risk Health Insurance Pools Today. [Online]. Available: http://www.selfemployedcountry.org/riskpools/overview.html [accessed April 27, 2005]. Achman L, Chollet D (Mathematica Policy Research, Inc.). 2001. Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools. New York, NY: Commonwealth Fund. ACS (American Cancer Society). 2001. Women’s Health and Cancer Rights Act. [Online]. Available: http://www.cancer.org/docroot/MIT/content/MIT_3_2X.asp [accessed September 22, 2004]. ACS. 2004a. Financial Guidance for Cancer Survivors and Their Families: Off Treatment. Atlanta, GA: ACS. ACS. 2004b. Reach to Recovery. [Online]. Available: http://www.cancer.org/docroot/ESN/content/ESN_3_1x_Reach_to_Recovery_5.asp?sitearea=SHR [accessed September 27, 2004]. AHRQ (Agency for Healthcare Research and Quality). 2004. Total Number of People Accounting for Expenditures (deduplicated) by Site of Service: United States, 2002. Medical Expenditure Panel Survey Household Component Data. [Online]. Available: http://www.meps.ahrq.gov/MEPSNet/TC/TC15.asp?File=HCFY2002&Table=HCFY2002_CNDXP [accessed March 1, 2005]. AHRQ. 2005. Overview of the MEPS Website. [Online]. Available: http://www.ahrq.gov/data/mepsweb.htm [accessed April 15, 2005].

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Alter C. 2005 (January 27–29). ICAN: The Individual Cancer Assistance Network. Presentation at the Second Annual Meeting of the American Psychosocial Oncology Society, Phoenix, AZ. American Benefits Council. 2004. Safe and Sound: A Ten-Year Plan for Promoting Personal Financial Security, An Employer Perspective. Washington, DC: American Benefits Council. Ayanian JZ, Kohler BA, Abe T, Epstein AM. 1993. The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med 329(5):326–331. Bar Association of San Francisco. 2004. Bar Association of San Francisco homepage. [Online]. Available: http://www.sfbar.org/ [accessed September 24, 2004]. Barnett A, Birnbaum H, Cremieux PY, Fendrick AM, Slavin M. 2000. The costs of cancer to a major employer in the United States: A case-control analysis. Am J Manag Care 6(11):1243–1251. Blumklotz A, Lansky DJ. 2001. Health Care Communications for Employees With Chronic Conditions. Washington, DC: National Health Care Purchasing Institute. Bordieri JE, Drehmer DE, Taricone PF. 1990. Personnel selection bias for job applicants with cancer. Journal of Applied Social Psychology 20(3):244–253. Bradley C. 2004 (June 16–18). Labor Market Outcomes of Cancer Survivors. Presentation at the National Cancer Institute and American Cancer Society Meeting, Cancer Survivorship: Pathways to Health After Treatment, Washington, DC. Bradley CJ, Bednarek HL. 2002. Employment patterns of long-term cancer survivors. Psychooncology 11(3):188–198. Bradley CJ, Bednarek HL, Neumark D. 2002a. Breast cancer survival, work, and earnings. J Health Econ 21(5):757–779. Bradley CJ, Bednarek HL, Neumark D. 2002b. Breast cancer and women’s labor supply. Health Serv Res 37(5):1309–1328. Bradley CJ, Neumark D, Bednarek HL, Schenk M. 2005a. Short-term effects of breast cancer on labor market attachment: Results from a longitudinal study. J Health Econ 24(1):137–160. Bradley CJ, Neumark D, Luo Z, Bednarek HL, Schenk M. 2005b. Employment outcomes of men treated for prostate cancer. J Natl Cancer Inst 97(13):958–965. Bristol-Myers Squibb. 2004. Creating a Legacy of Hope: Corporate Social Responsibility at Bristol-Myers Squibb. New York, NY: Bristol-Myers Squibb. Brown HG, Ming TS. 1992. Vocational rehabilitation of cancer patients. Semin Oncol Nurs 8(3):202–211. Brown ML, Riley GF, Schussler N, Etzioni R. 2002. Estimating health care costs related to cancer treatment from SEER-Medicare data. Med Care 40(8 Suppl): IV-104–IV-117. Bruyere SM. 2000. Disability Employment Policies and Practices in Private and Federal Sector Organizations. Ithaca, NY: Cornell University. Bureau of Labor Statistics. 2004. National Compensation Survey: Employee Benefits in Private Industry in the United States, March 2004. Washington, DC: U.S. Department of Labor. Bureau of Labor Statistics. 2005. Private industry by supersector and size of establishment: Establishments and employment, first quarter 2003, by State. [Online]. Available: http://www.bls.gov/cew/ew03table4.pdf [accessed July 18, 2005]. Calder KJ, Pollitz K. 2002. What Cancer Survivors Need to Know About Health Insurance. Silver Spring, MD: National Coalition for Cancer Survivorship. Calhoun EA, Bennett CL. 2003. Evaluating the total costs of cancer. The Northwestern University Costs of Cancer Program. Oncology (Huntingt) 17(1):109–114; discussion 119–121.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition CancerCare. 2003. Financial Needs: CancerCare’s Financial Assistance Programs. [Online]. Available: http://www.cancercare.org/FinancialNeeds/FinancialNeedsList.cfm?c=387 [accessed September 19, 2004]. CancerCare. 2004. Cancer in the Workplace. [Online]. Available: http://www.cancercare.org/TelephoneEducationWorkshopArchive/TelephoneEducationWorkshopArchiveList.cfm?c=408 [accessed September 23, 2004]. CancerCare. 2005. CancerCare homepage. [Online]. Available: http://www.cancercare.org [accessed May 11, 2005]. Caplan C, Brangan N. 2004. Out-of-Pocket Spending on Health Care by Medicare Beneficiaries Age 65 and Older in 2003. Public Policy Institute Data Digest. Washington, DC: AARP Public Policy Institute. CDC (Centers for Disease Control and Prevention). 2004. Breast and Cervical Cancer Prevention and Treatment Act of 2000. [Online]. Available: http://www.cdc.gov/cancer/nbccedp/law106-354.htm [accessed September 22, 2004]. CDC. 2005. NBCCEDP Screening Program Summaries. [Online]. Available: http://www.cdc.gov/cancer/nbccedp/sps/index.htm#2 [accessed April 26, 2005]. Center on an Aging Society. 2002. Cancer: A major national concern. Challenges for the 21st Century: Chronic and Disabling Conditions Series. No. 4. Washington, DC: Georgetown University. Center on an Aging Society. 2004. Workers affected by chronic conditions: How can workplace policies and programs help? Challenges for the 21st Century: Chronic and Disabling Conditions Series. No. 7. Washington, DC: Georgetown University. Chirikos TN. 2001. Economic impact of the growing population of breast cancer survivors. Cancer Control 8(2):177–183. Chirikos TN, Russell-Jacobs A, Cantor AB. 2002a. Indirect economic effects of long-term breast cancer survival. Cancer Pract 10(5):248–255. Chirikos TN, Russell-Jacobs A, Jacobsen PB. 2002b. Functional impairment and the economic consequences of female breast cancer. Women Health 36(1):1–20. Claxton G, Gil I, Finder B, Holve E, Gabel J, Pickreign J, Whitmore H, Hawkins S, Fahlman C. 2004. Employer Health Benefits 2004 Annual Survey. Menlo Park, CA and Chicago, IL: Henry J. Kaiser Family Foundation and Health Research and Educational Trust. CMS (Centers for Medicare and Medicaid Services). 2004a. Beneficiary Fact Sheet (External Use). [Online]. Available: http://www.cms.hhs.gov/researchers/demos/FctSht_Benefic_REVISED_COSTS_070104.pdf [accessed May 10, 2005]. CMS. 2004b. Breast and Cervical Cancer Prevention and Treatment Activity Map. [Online]. Available: http://www.cms.hhs.gov/bccpt/bccptmap.asp [accessed February 17, 2005]. CMS. 2004c. The Medicare Replacement Drug Demonstration. [Online]. Available: http://www.cms.hhs.gov/researchers/demos/drugcoveragedemo.asp [accessed September 24, 2004]. CMS. 2004d. SHO Letter. [Online]. Available: http://www.cms.hhs.gov/states/letters/sho01041.asp [accessed February 17, 2005]. CMS. 2004e. The Women’s Health and Cancer Rights Act. [Online]. Available: http://www.cms.hhs.gov/hipaa/hipaa1/content/whcra.asp [accessed September 22, 2004]. Cohen JW, Krauss NA. 2003. Spending and service use among people with the fifteen most costly medical conditions, 1997. Health Aff (Millwood) 22(2):129–138. Cohen RA, Martinez ME. 2005. Health Insurance Coverage: Estimates from the National Health Interview Survey, 2004. [Online]. Available: http://www.cdc.gov/nchs/nhis.htm [accessed July 19, 2005]. Conti JV. 1990. Cancer rehabilitation: Why can’t we get out of first gear? Journal of Rehabilitation 56(4):19–22.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition de Lima M, Strom SS, Keating M, Kantarjian H, Pierce S, O’Brien S, Freireich E, Estey E. 1997. Implications of potential cure in acute myelogenous leukemia: Development of subsequent cancer and return to work. Blood 90(12):4719–4724. DeNavas-Walt C, Proctor BD, Mills RJ (U.S. Census Bureau). 2004. Income, Poverty, and Health Insurance Coverage in the United States: 2003. Current Population Reports, Pp. 60–226. Washington, DC: U.S. Census Bureau. Desai MM, Bruce ML, Desai RA, Druss BG. 2001. Validity of self-reported cancer history: A comparison of health interview data and cancer registry records. Am J Epidemiol 153(3):299–306. Duchon L, Schoen C, Doty MM, Davis K, Strumpf E, Bruegman S. 2001. Security Matters: How Instability in Health Insurance Puts U.S. Workers at Risk . Washington, DC: The Commonwealth Fund. EEOC (U.S. Equal Employment Opportunity Commission). 2004a. Americans with Disabilities Act of 1990 (ADA) Charges FY 1992–FY 2003. [Online]. Available: http://www.eeoc.gov/stats/ada-charges.html [accessed June 1, 2004]. EEOC. 2004b. Disability Discrimination. [Online]. Available: http://www.eeoc.gov/types/ada.html [accessed June 1, 2004]. Employee Assistance Professionals Organization. 2004. Employee Assistance Professionals Organization. [Online]. Available: http://www.eapassn.org [accessed September 20, 2004]. Families USA. 2001. Getting Less Care: The Uninsured With Chronic Health Conditions. Washington, DC: Families USA. Felt-Lisk S, McHugh M, Thomas M. 2004. Examining Access to Specialty Care for California’s Uninsured: Full Report. Oakland, CA: California HealthCare Foundation. Ferrante JM, Gonzalez EC, Roetzheim RG, Pal N, Woodard L. 2000. Clinical and demographic predictors of late-stage cervical cancer. Arch Fam Med 9(5):439–445. Fertile Hope. 2005. Financial Assistance. [Online]. Available: http://www.fertilehope.org/resources/assistance.cfm [accessed February 20, 2005]. Fesko SL. 2001. Workplace experiences of individuals who are HIV+ and individuals with cancer. Rehabil Couns Bull 45(1):2–11. Fleck C. 2005. Throw me a lifeline: The new bankruptcy law could sink families with big medical bills. AARP Bulletin (May):28. Friedland R (Georgetown Center on an Aging Society). 2005. Special analysis of the Medical Expenditure Panel Survey (MEPS). Commissioned by the IOM Committee on Cancer Survivorship. Unpublished. FWI (Families and Work Institute). 1998. Business Work-Life Study. [Online]. Available: http://www.familiesandwork.org/summary/worklife.pdf [accessed April 27, 2005]. GAO (General Accounting Office). 1997. The Health Insurance Portability and Accountability Act of 1996: Early Implementation Concerns. Washington, DC: GAO. GAO. 2000. Implementation of HIPAA: Progress Slow in Enforcing Federal Standards in Nonconforming States. Washington, DC: GAO. GAO. 2001. Private Health Insurance: Federal Role in Enforcing New Standards Continues to Evolve. Washington, DC: GAO. Georgetown University Health Policy Institute. 2004. Summary of Key Consumer Protections in Individual Health Insurance Markets. Washington, DC: Georgetown University. Goetzel RZ, Hawkins K, Ozminkowski RJ, Wang S. 2003. The health and productivity cost burden of the “top 10” physical and mental health conditions affecting six large U.S. employers in 1999. J Occup Environ Med 45(1):5–14. Goff V. 2004. Consumer Cost Sharing in Private Health Insurance: On the Threshold of Change. NHPF Issue Brief No. 798. Washington, DC: National Health Policy Forum.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Good Health for Life. 2004. Good Health for Life homepage. [Online]. Available: http://www.ghfl.org/ [accessed September 20, 2004]. Grann VR, Jacobson JS. 2003. Health insurance and cancer survival. Arch Intern Med 163(18):2123–2124. Gruber J, Madrian BC. 1993. Health Insurance and Early Retirement: Evidence From the Availability of Continuation Coverage. NBER Working Paper Series, Working Paper No. 4594. Cambridge, MA: National Bureau of Economic Research. Guidry JJ, Aday LA, Zhang D, Winn RJ. 1998. Cost considerations as potential barriers to cancer treatment. Cancer Pract 6(3):182–187. Gusmano MK, Fairbrother G, Park H. 2002. Exploring the limits of the safety net: Community health centers and care for the uninsured. Health Aff (Millwood) 21(6):188–194. Haley J, Zuckerman S. 2003. Is Lack of Coverage a Short- or Long-Term Condition? Report to the Kaiser Family Foundation Commission on Medicaid and the Uninsured. Washington, DC: Kaiser Family Foundation. Hewitt M, Breen N, Devesa S. 1999. Cancer prevalence and survivorship issues: Analyses of the 1992 National Health Interview Survey. J Natl Cancer Inst 91(17):1480–1486. Hewitt M, Rowland JH, Yancik R. 2003. Cancer survivors in the United States: Age, health, and disability. J Gerontol A Biol Sci Med Sci 58(1):82–91. Himmelstein DU, Warren E, Thorne D, Woolhandler S. 2005. MarketWatch: Illness and injury as contributors to bankruptcy. Health Aff (Millwood) [Online]. Available: http://content.healthaffairs.org/cgi/reprint/hlthaff.w5.63v1?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=himmelstein&fulltext=bankruptcy&andorexactfulltext=and&searchid=1121117324126_3699&stored_search=&FIRSTINDEX=0&resourcetype=1&journalcode=healtha [accessed July 11, 2005]. Hoffman B. 1989. Cancer survivors at work: Job problems and illegal discrimination. Oncol Nurs Forum 16(1):39–43. Hoffman B. 1991. Employment discrimination: Another hurdle for cancer survivors. Cancer Invest 9(5):589–595. Hoffman B. 1999. Cancer survivors’ employment and insurance rights: A primer for oncologists. Oncology (Huntingt) 13(6):841–846; discussion 846, 849, 852. Hoffman B. 2000. Between a disability and a hard place: The cancer survivors’ Catch-22 of proving disability status under the Americans with Disabilities Act. Maryland Law Review 59(2):352–439. Hoffman B. 2002. Policy Recommendations to Address the Employment and Insurance Concerns of Cancer Survivors. Background paper commissioned by the IOM. Unpublished. Hoffman B. 2004a. A Cancer Survivor’s Almanac: Charting Your Journey. 3rd ed. Hoboken, NJ: John Wiley & Sons. Hoffman B. 2004b. Working it out: Your employment rights. In: Hoffman B, ed. A Cancer Survivor’s Almanac: Charting Your Journey. 3rd ed. Hoboken, NJ: John Wiley & Sons. Pp. 242–269. HRSA (Health Resources and Services Administration). 2004. Health Resources and Services Administration homepage. [Online]. Available: http://www.hrsa.gov [accessed September 22, 2004]. Hwang W, Weller W, Ireys H, Anderson G. 2001. Out-of-pocket medical spending for care of chronic conditions. Health Aff (Millwood) 20(6):267–278. IOM (Institute of Medicine). 2001. Coverage Matters: Insurance and Health Care. Washington, DC: National Academy Press. IOM. 2002a. Care Without Coverage: Too Little, Too Late. Washington, DC: The National Academies Press.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition IOM. 2002b. The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs. Wunderlich GS, Rice DP, Amado NL, eds. Washington, DC: The National Academies Press. IOM. 2004a. Insuring America’s Health: Principles and Recommendations. Washington, DC: The National Academies Press. IOM. 2004b. Meeting Psychosocial Needs of Women with Breast Cancer. Hewitt M, Herdman R, Holland J, eds. Washington, DC: The National Academies Press. Kaiser Family Foundation. 2001. Medicaid’s Role for the Disabled Population Under Age 65. Washington, DC: Kaiser Family Foundation. Kaiser Family Foundation. 2004a. The Economic Downturn and Changes in Health Insurance Coverage, 2000–2003 [Online]. Available at: http://www.kff.org/uninsured/7174.cfm (accessed July 11, 2005). Kaiser Family Foundation. 2004b. Kaiser Daily Health Policy Report: Bush Administration Releases Proposed Rules for Medicare Prescription Drug Benefit. [Online]. Available: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=24978 [accessed July 27, 2004]. Kaiser Family Foundation. 2004c. Kaiser Daily Health Policy Report: Senate Committee Approves Bill to Help States Create High-Risk Health Insurance Pools. [Online]. Available: http://www.kaisernetwork.org/daily_reports/print_report.cfm?DR_ID=25896&dr_cat+3 [accessed September 23, 2004]. Kaiser Family Foundation. 2004d. Medicare Advantage Fact Sheet. Menlo Park, CA: Kaiser Family Foundation. Kaiser Family Foundation. 2004e. Medicare at a Glance Fact Sheet. Menlo Park, CA: Kaiser Family Foundation. Kaiser Family Foundation. 2004f. The Medicare Prescription Drug Law Fact Sheet. Menlo Park, CA: Kaiser Family Foundation. Kenny KA, Blake SC, Maloy K, Ranji UR, Salganicoff A (George Washington University School of Public Health and Health Services and the Henry J. Kaiser Family Foundation). 2004. Hearing Their Voices: Lessons From the Breast and Cervical Cancer Prevention and Treatment Act. Menlo Park, CA: Kaiser Family Foundation. Kessler RC, Greenberg PE, Mickelson KD, Meneades LM, Wang PS. 2001. The effects of chronic medical conditions on work loss and work cutback. J Occup Environ Med 43(3):218–225. Kornblith AB. 1998. Psychosocial adaptation of cancer survivors. In: Holland JC, ed. Psycho-Oncology. New York, NY: Oxford University Press. Kuerer HM, Hwang ES, Anthony JP, Dudley RA, Crawford B, Aubry WM, Esserman LJ. 2000. Current national health insurance coverage policies for breast and ovarian cancer prophylactic surgery. Ann Surg Oncol 7(5):325–332. LAF (Lance Armstrong Foundation). 2004. LiveStrong. [Online]. Available: http://www.livestrong.org [accessed September 20, 2004]. Langa KM, Fendrick AM, Chernew ME, Kabeto MU, Paisley KL, Hayman JA. 2004. Out-of-pocket health-care expenditures among older Americans with cancer. Value Health 7(2):186–194. Lankford K. 2002. Covering a Survivor. Kiplinger’s Personal Finance 56(3):108. Laris M. 2005a (January 10). Loudoun teacher with cancer forced out. The Washington Post. P. B3. Laris M. 2005b (January 13). Teacher with cancer is offered her job back. The Washington Post. P. B1. Lee FC. 2004. Employer-based disease management programs in cancer. Dis Manage Health Outcomes 12(1):9–17.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Lee-Feldstein A, Feldstein PJ, Buchmueller T, Katterhagen G. 2000. The relationship of HMOs, health insurance, and delivery systems to breast cancer outcomes. Med Care 38(7):705–718. Legal Information Network for Cancer. 2004. LINC homepage. [Online]. Available: http://www.cancerlinc.org/ [accessed September 24, 2004]. Lemaire J, Subramanian K, Armstrong K, Asch DA. 2000. Pricing term insurance in the presence of a family history of breast or ovarian cancer. North American Actuarial Journal 4(2):75–87. Loy B, Batiste LC. 2004. Accommodating People with Cancer. [Online]. Available: http://www.jan.wvu.edu/media/Cancer.html [accessed June 1, 2004]. Marcus AD. 2004 (September 7). Price becomes factor in cancer treatment. The Wall Street Journal. P. D1. May JH, Cunningham PJ. 2004. Tough Trade-Offs: Medical Bills, Family Finances, and Access to Care. Issue Brief No. 85. Washington, DC: Center for Studying Health System Change. McDavid K, Tucker TC, Sloggett A, Coleman MP. 2003. Cancer survival in Kentucky and health insurance coverage. Arch Intern Med 163(18):2135–2144. Mellette SJ. 1985. The cancer patient at work. CA Cancer J Clin 35(6):360–373. Merlis M. 2005. Fundamentals of Underwriting in the Nongroup Health Insurance Market: Access to Coverage and Options for Reform. NHPF Background Paper. Washington, DC: National Health Policy Forum. Messner C, Patterson D. 2001. The challenge of cancer in the workplace. Cancer Pract 9(1):50–51. Mundy RR, Moore SC, Mundy GD. 1992. A missing link: Rehabilitation counseling for persons with cancer. Journal of Rehabilitation 58(2):47–49. NCCS (National Coalition for Cancer Survivorship). 2004. Cancer Survival Toolbox. Silver Spring, MD: NCCS. NCCS and Amgen. Undated. Cancer in the Workplace Survey Highlights. Silver Spring, MD: NCCS. NCHS (National Center for Health Statistics). 2002. 2000 National Health Interview Survey (NHIS) Public Use Data Release. Hyattsville, MD: NCHS. NCHS. 2003a. 2001 National Health Interview Survey (NHIS) Public Use Data Release. Hyattsville, MD: NCHS. NCHS. 2003b. 2002 National Health Interview Survey (NHIS) Public Use Data Release. Hyattsville, MD: NCHS. NCHS. 2004. 2003 National Health Interview Survey (NHIS) Public Use Data Release. Hyattsville, MD: NCHS. NCI. 2002. Facing Forward: Life After Cancer Treatment. Bethesda, MD. NCI. NCI (National Cancer Institute). 2004a. Dictionary of Cancer Terms. [Online]. Available: http://www.nci.nih.gov/templates/db_alpha.aspx?expand=A [accessed September 24, 2004]. NCI. 2004b. Fact Sheet: Breast Cancer. Bethesda, MD. NCI. NCI. 2005. Estimated U.S. Cancer Prevalence. [Online]. Available: http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html [accessed July 29, 2005]. NCSL (National Conference of State Legislatures). 2005. State Genetics Employment Laws. [Online]. Available: http://www.ncsl.org/programs/health/genetics/ndiscrim.htm [accessed June 15, 2005]. New York Legal Assistance Group. 2004. NYLAG homepage. [Online]. Available: http://nylag.org/ [accessed September 24, 2004]. PAF (Patient Advocate Foundation). 2005. Report Search. [Online]. Available: http://www.patientadvocate.org/report.php [accessed February 20, 2005].

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition Parker-Pope T. 2004 (June 1). Efforts mount to combat lymphedema, a devastating side effect of cancer care. The Wall Street Journal. P. D1. Penson DF, Stoddard ML, Pasta DJ, Lubeck DP, Flanders SC, Litwin MS. 2001. The association between socioeconomic status, health insurance coverage, and quality of life in men with prostate cancer. J Clin Epidemiol 54(4):350–358. Pereira J. 2003 (July 14). To save on healthcare costs, firms fire disabled workers. The Wall Street Journal. P. A1. Pollitz K. 2004 (October 27–28). Health Insurance Problems for People with Serious and Chronic Illnesses. Presentation at the meeting of the IOM Committee on Cancer Survivorship, Irvine, CA. Pollitz K, Lewis S, Kofman M, Bangit E, Lucia K, Libster J. 2004. A Consumer’s Guide to Getting and Keeping Health Insurance in Maryland. Washington, DC: Georgetown University Health Policy Institute. Pollitz K, Sorian R, Thomas K (Georgetown University Institute for Health Care Research and Policy and K.A. Thomas and Associates). 2001. How Accessible Is Individual Health Insurance for Consumers in Less-Than-Perfect Health? Menlo Park, CA: Kaiser Family Foundation. Pollitz K, Tapay N, Hadley E, Specht J. 2000. Early experience with ‘new federalism’ in health insurance regulation. Health Aff (Millwood) 19(4):7–22. Pyenson B, Zenner PA. 2002. The Cost of Cancer to the Worksite. New York, NY: Milliman USA, Inc. Roessler R, Sumner G. 1997. Employer opinions about accommodating employees with chronic illnesses. Journal of Applied Rehabilitation Counseling 28(3):29–34. Roetzheim RG, Gonzalez EC, Ferrante JM, Pal N, Van Durme DJ, Krischer JP. 2000a. Effects of health insurance and race on breast carcinoma treatments and outcomes. Cancer 89(11):2202–2213. Roetzheim RG, Pal N, Gonzalez EC, Ferrante JM, Van Durme DJ, Krischer JP. 2000b. Effects of health insurance and race on colorectal cancer treatments and outcomes. Am J Public Health 90(11):1746–1754. Rothstein MA, Kennedy K, Ritchie KJ, Pyle K. 1995. Are cancer patients subject to employment discrimination? Oncology (Huntingt) 9(12):1303–1306; discussion 1311–1312, 1315. Sanchez KM, Richardson JL. 2004 (June 16–18). Cancer History Disclosure in the Workplace. Presentation at the NCI and ACS Cancer Survivorship: Pathways to Health After Treatment meeting, Washington, DC. Schwerin B. 2005 (January 27–28). The Cancer Legal Resource Center—Assistance for Cancer-Related Legal Issues. Presentation at the Annual Conference of the American Psychosocial Oncology Society, Phoenix, AZ. Short PF, Graefe DR, Schoen C. 2003. Churn, Churn, Churn: How Instability of Health Insurance Shapes America’s Uninsured Problem. Washington, DC: The Commonwealth Fund Issue Brief. Short PF, Vasey J, Markowski M, Zabora J, Harper G, Rybka W. 2005a. Quality of Life in a Large Cohort of Adult Cancer Survivors. Penn State Population Research Institute Working Paper 2005–01. [Online]. Available: http://www.pop.psu.edu/general/pubs/working_papers/psu-pri/wp0501.pdf [accessed April 13, 2005]. Short PF, Vasey JJ, Tunceli K. 2005b. Employment pathways in a large cohort of adult cancer survivors. Cancer 103(6):1292–1301. Spelten ER, Sprangers MA, Verbeek JH. 2002. Factors reported to influence the return to work of cancer survivors: A literature review. Psychooncology 11(2):124–131. SSA (Social Security Administration). 2004a. Annual Statistical Report on the Social Security Disability Insurance Program. Washington, DC: SSA.

OCR for page 363
From Cancer Patient to Cancer Survivor: Lost in Transition SSA. 2004b. SSI Annual Statistical Report, 2003. Washington DC: SSA. State High Risk. 2004. State High Risk Pool Funding Extension Act of 2004 (Introduced in Senate). [Online]. Available: http://thomas.loc.gov/cgi-bin/query/z?c108:S.2283: [accessed October 5, 2004]. State High Risk. 2005. State High Risk Pool Funding Extension Act of 2005 (Reported in Senate). [Online]. Available: http://thomas.loc.gov/cgi-bin/query/D?c109:1:./temp/~c109zOUpsl: [accessed April 14, 2005]. Steiner JF, Cavender TA, Main DS, Bradley CJ. 2004. Assessing the impact of cancer on work outcomes: What are the research needs? Cancer 101(8):1703–1711. Taylor JC, Terrell JE, Ronis DL, Fowler KE, Bishop C, Lambert MT, Myers LL, Duffy SA, Bradford CR, Chepeha DB, Hogikyan ND, Prince ME, Teknos TN, Wolf GT. 2004. Disability in patients with head and neck cancer. Arch Otolaryngol Head Neck Surg 130(6):764–769. Thorpe KE, Howard D. 2003. Health insurance and spending among cancer patients. Health Aff (Millwood) (Suppl): W3-189–198 [Online]. Available: http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.189v1 (accessed July 11, 2005). Tu HT. 2004. Rising Health Costs, Medical Debt and Chronic Conditions. Issue Brief No. 88. Washington, DC: Center for Studying Health System Change. U.S. Department of Labor. 2000. Accommodating Employees with Hidden Disabilities. [Online]. Available: http://www.dol.gov/odep/pubs/ek00/hiddenemp.htm [accessed June 7, 2004]. U.S. Department of Labor. 2004a. Fact Sheet #28: The Family and Medical Leave Act of 1993. [Online]. Available: http://www.dol.gov/esa/regs/compliance/whd/printpage.asp?REF=whdfs28.htm [accessed September 16, 2004]. U.S. Department of Labor. 2004b. Low Cost Accommodation Solutions. [Online]. Available: http://www.jan.wvu.edu/media/LowCostSolutions.html [accessed September 15, 2004]. U.S. Department of Labor. 2004c. What is JAN? [Online]. Available: http://www.jan.wvu.edu/english/whatis.htm [accessed June 4, 2004]. U.S. DHHS (U.S. Department of Health and Human Services). 2002. HHS to Help States Create High-Risk Pools to Increase Access to Health Coverage. [Online]. Available: http://www.hhs.gov/news/press/2002pres/20021126a.html [accessed January 31, 2003]. U.S. DHHS. 2003a. HHS Awards $690,000 to Maryland to Promote High-Risk Pools to Cover Uninsured Residents. [Online]. Available: http://www.hhs.gov/news/press/2003pres/20030430b.html [accessed September 2004]. U.S. DHHS. 2003b. HHS to Award $80 Million to States to Offset Costs of Insurance for Residents Too Sick for Conventional Coverage. [Online]. Available: http://www.hhs.gov/news/press/2003pres/20030428.html [accessed September 2004]. U.S. DHHS. 2003c. HHS Awards Nearly $30 Million to States to Offset Costs of Insurance for Residents Too Sick for Conventional Coverage. [Online]. Available: http://www.hhs.gov/news/press/2003pres/20031217a.html [accessed September 2004]. Voelker R, ed. 1999. Living, Coping, and Working with Cancer. Business and Health. Vol. 3. Montvale, NJ: Medical Economics Company. White House. 2000. Executive Order to Prohibit Discrimination in Federal Employment Based on Genetic Testing. [Online]. Available: http://www.opm.gov/pressrel/2000/genetic_eo.htm [accessed September 16, 2004]. Williams CH, Fuchs BC (Robert Wood Johnson Foundation). 2004. Expanding the Individual Health Insurance Market: Lessons From the State Reforms of the 1990s. The Synthesis Project, Policy Brief No. 4. Princeton, NJ: Robert Wood Johnson Foundation. Yabroff KR, Lawrence WF, Clauser S, Davis WW, Brown ML. 2004. Burden of illness in cancer survivors: Findings from a population-based national sample. J Natl Cancer Inst 96(17):1322–1330.