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7 Employment, Insurance, and Economic Issues A history of cancer can have a significant impact on employment opportunities and may also affect being able to obtain and retain health and life insurance (Ferrell and Hassey Dow, 1997; Monaco et al., 1997; President’s Cancer Panel, 2001; Weiner et al., 2002). This chapter outlines the employment and insurance concerns of particular relevance to survivors of childhood cancer.1 The current legal remedies to these socioeconomic problems are described, as are potential educational, legislative, and advocacy responses. Selected federal and state programs are described that are of relevance to childhood cancer survivors, including Medicaid and Medicare, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and the Title V Children with Special Health Care Needs (CSHCN) program. EMPLOYMENT The Impact of Cancer on Survivors’ Employment Opportunities Most cancer survivors who worked before their diagnosis return to work following their treatment (Crothers, 1986). Retaining one’s employ- 1 Much of this chapter is based on a background paper prepared by Barbara Hoffman and material from A Cancer Survivor’s Almanac: Charting Your Journey. There are no commercial genetic screening tests available to predict pediatric cancer or cancer recurrence among survivors of pediatric cancer and so the potential for discrimination on the basis of genetic testing is not discussed.
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ment status has obvious financial benefits and is often also necessary for health insurance coverage, self-esteem, and social support. Survivors of childhood cancer may have late effects that limit their initial entry into the workforce or restrict their employment options. In a recent study of over 10,000 members of the Childhood Cancer Survivor Study cohort, virtually all (95 percent) of the survivors had worked, but the likelihood of employment was lower as compared to their siblings (Pang et al., 2002). Similar findings emerged from an earlier survey of 219 childhood survivors who were treated between 1945 and 1975 and were at least 30 years old at the time of the survey. Childhood survivors, with the exception of survivors of CNS tumors, reported very similar employment histories as a matched control group. Members of the control group, however, reported somewhat higher annual incomes than did the survivors (Hays et al., 1992). When employed, cancer survivors have often reported problems in the workplace, including dismissal, failure to hire, demotion, denial of promotion, undesirable transfer, denial of benefits, and hostility (Hoffman, 1996). Studies conducted prior to the passage of comprehensive employment discrimination laws suggest that survivors of childhood cancer encountered substantial employment obstacles: 43 of 403 (11 percent) Hodgkin’s disease survivors treated at Stanford University experienced difficulties at work that they attributed to their cancer history (Fobair et al., 1986), approximately 11 percent of adult survivors of childhood cancer reported some form of employment-related discrimination according to a study of 227 former pediatric cancer patients (Green et al., 1991), 15 of 60 (25 percent) survivors of childhood cancer in another study reported job discrimination (10 persons were refused a job at least once, 3 were denied benefits, 3 experienced illness-related conflict with a supervisor, 4 reported job task problems, and 11 were rejected by the military) (Koocher and O’Malley, 1982), 8 of the 40 (20 percent) survivors of childhood/adolescent Hodgkin’s disease reported job problems (Wasserman et al., 1987), and younger cancer survivors who were either employed or active in the labor market were more concerned than older survivors about revealing their cancer history in searching for another job (Koocher and O’Malley, 1982). Most employers treat cancer survivors fairly and legally. Some employers, however, erect unnecessary and sometimes illegal barriers to survivors’ job opportunities (Hoffman, 1996; Hoffman, 1999; Hoffman, 2002a). Most personnel decisions are driven by economic factors, not by charitable or personal consideration. Employers may be motivated to fire an em-
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ployee with cancer (or a history of cancer) because of concerns about increased costs due to insurance expenses and lost productivity or because of concerns about the psychological impact of a survivors’ cancer history on other employees. Some employers may fail to revise their personnel policies to comply with new laws, and even among those with updated policies, employers may not train their personnel managers properly to comply with these laws. The interpretation of laws designed to prohibit discriminatory practices is sometimes unclear and is being resolved in the courts. Some employers and co-workers treat cancer survivors differently from other workers, in part, because they have misconceptions about survivors’ abilities to work during and after cancer treatment (Working Woman/ Amgen, 1996; Yankelovich, 1992). 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 some freedom from discrimination and to be treated according to their individual abilities. Three federal laws—the Americans with Disabilities Act, the Family and Medical Leave Act, and the Employee Retirement and Income Security Act—provide cancer survivors with some protection against employment discrimination. Americans with Disabilities Act The Americans with Disabilities Act (ADA) of 1990 (42 U.S.C. 12101 et seq.) prohibits some types of job discrimination by employers, employment agencies, and labor unions against people who have or have had cancer. All private employers with 15 or more employees, state and local governments, the legislative branch of the federal government, employment agencies, and labor unions are covered by the ADA. A “qualified individual with a disability” is protected by the ADA if he or she can perform the “essential functions” of the job. The ADA prohibits employment discrimination against individuals with a “disability,” a “record” of a “disability,” or who are “regarded” as having a “disability.” A “disability” is a major health “impairment” that substantially limits the ability to do everyday activities, such as drive a car or go to work. Cancer is an “impairment” as defined by the law. In most circumstances, cancer survivors, regardless of whether they are in treatment, in remission, or cured, are protected as persons with a disability because their cancer substantially limited a major life activity. Indeed, many federal courts and the Equal Employment Opportunities Commission (EEOC) consider cancer in most circumstances to be a disability under the ADA
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(Hoffman, 2000). Whether a cancer survivor is covered by the ADA is determined, however, on a case-by-case basis. Because the United States Supreme Court has not, to date, squarely addressed whether all cancer survivors are protected by the ADA, cancer survivors’ rights under the law vary depending on the facts of the individual case and the court in which the case is heard. Some courts have concluded that cancer survivors are “persons with a disability” as defined by the statute. Other courts, however, have placed cancer survivors in a “Catch-22” by concluding that a cancer survivor who is sufficiently healthy to work is not a person with a disability as defined by the ADA. In one case a woman with breast cancer was acknowledged to have experienced nausea, fatigue, swelling, inflammation, and pain resulting from her treatment, but the United States Court of Appeals for the Fifth Circuit found that she could nonetheless perform her essential job duties with accommodations (Ellison v. Software Spectrum Inc.). Although the Court of Appeals found that the woman’s cancer affected her ability to work, it concluded that these limitations were not sufficient to render her a “person with a disability” as defined by the ADA. Other courts have followed the reasoning of the Fifth Circuit and rejected lawsuits by cancer survivors. In another case, a long-term survivor of non-Hodgkin’s lymphoma, fired because his employer feared that future health insurance claims would cause his insurance costs to rise, was determined not to be covered under the ADA after his dismissal (Hirsch v. National Mall and Serv., Inc.). The court concluded “that the ADA was not truly meant to apply to this situation” because the claimant was discriminated against due to the costs of his cancer treatment, and not because of the cancer itself” (989 F. Supp. 977, 980). The ADA prohibits discrimination in most job-related activities such as hiring, firing, and benefits. In most cases, a prospective employer may not ask applicants if they have ever had cancer. An employer has the right to know only if an applicant is able to perform the essential functions of the job. A job offer may be contingent upon passing a relevant medical exam, provided that all prospective employees are subject to the same exam. An employer may ask detailed questions about health only after making a job offer. Cancer survivors who need extra time or help to work are entitled to a “reasonable accommodation.” Common accommodations for survivors include changes in work hours or duties to accommodate medical appointments and treatment side effects. An employer does not have to make changes that would impose an “undue hardship” on the business or other workers. “Undue hardship” refers to any accommodation that would be unduly costly, extensive, substantial or disruptive, or that would fundamentally alter the nature or operation of the business. For example, an
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employer may replace a survivor who has to miss six months of work that cannot be performed by a temporary employee. The ADA does not prohibit an employer from ever firing or refusing to hire a cancer survivor. Because the law requires employers to treat all employees similarly, regardless of disability, an employer may fire a cancer survivor who would have been terminated even if he or she was not a survivor. Most employment discrimination laws protect only the employee. The ADA offers protection more responsive to survivors’ needs because it prohibits discrimination against family members, too. Employers may not discriminate against workers because of their relationship or association with a “disabled” person. Employers may not assume that an employee’s job performance would be affected by the need to care for a family member who has cancer. Family and Medical Leave Act The Family and Medical Leave Act (FMLA) (29 U.S.C. 2601 et seq.) requires employers with at least 50 workers to provide certain benefits for serious medical illness, including cancer, for employees or dependents. The statute provides a number of benefits to cancer survivors: provides 12 weeks of unpaid leave during any 12 month period, requires employers to continue to provide benefits, including health insurance coverage, during the leave period, requires employers to restore employees to the same or equivalent position at the end of the leave period, allows leave to care for a spouse, child, or parent who has a “serious health condition” such as cancer, allows leave because a serious health condition renders the employee “unable to perform the functions of the position,” allows intermittent or reduced work schedule when “medically necessary” (under some circumstances, an employer may transfer the employee to a position with equivalent pay and benefits to accommodate the new work schedule), and allows employees to “stack” or add leave under the FMLA to leave allowable under state medical leave law. The FMLA reasonably balances the needs of the employer and employee. It requires employees to make reasonable efforts to schedule foreseeable medical care so as to not disrupt unduly the workplace,
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requires employees to give employers 30 days notice of foreseeable medical leave, or as much notice as is practicable, allows employers to require employees to provide certification of medical needs and allows employers to seek a second opinion, at the employer’s expense, to corroborate medical need, and permits employers to provide leave provisions more generous than those required by the FMLA. In addition to the ADA and FMLA, another federal law, the Employee Retirement and Income Security Act (ERISA) and an Executive Order provide some legal protection for cancer survivors who encounter problems at work. The Employee Retirement and Income Security Act (ERISA) The Employee Retirement and Income Security Act (29 U.S.C. 1001 et seq.) prohibits an employer from discriminating against an employee to prevent him or her from collecting benefits under an employee benefit plan. Employee benefit plans are defined broadly, and include any plan providing “medical, surgical, or hospital care benefits, or benefits in the event of sickness, accident, disability, death, or unemployment.” Employers who offer group benefit packages to their employees are subject to ERISA. ERISA does not, however, apply to the large number of employers who self fund their insurance plans. Some employers fear that the participation of a cancer survivor in a group medical plan will drain benefit funds or increase the employer’s insurance premiums. An employer may violate ERISA if, upon learning of a worker’s cancer history, it dismisses that worker to exclude him or her from a group health plan. An employer also may violate ERISA by encouraging a person with a cancer history to retire as a “disabled” employee. Most benefit plans define disability narrowly to include only the most debilitating conditions. Individuals with a cancer history often do not fit under such a definition and should not be compelled to so label themselves. ERISA covers both participants (employees) and beneficiaries (spouses and children). Thus, if the employee is fired because his or her child has cancer, the employee may be entitled to file a claim. ERISA, however, is inapplicable to many victims of employment discrimination, including individuals who are denied a new job because of their medical status, employees who are subjected to differential treatment that does not affect their benefits, and employees whose compensation does not include benefits.
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Executive Order Unlike most private and state employees, federal employees are protected from genetic-based discrimination. An Executive Order issued by President Clinton in 2000 prohibits federal departments and agencies form making employment decisions about civilian federal employees based on protected genetic information (http://www.opm.gov/pressrel/2000/genetic_eo.htm, accessed March 15, 2003). The Order also prohibits federal employers from requiring genetic tests as a condition of being hired or receiving benefits. State Employment Rights Laws All states except Alabama and Mississippi have laws that prohibit discrimination against people with disabilities in public and private employment (Hoffman, 1996; Hoffman 2002a; Hoffman, personal communication to Maria hewitt, 2002). Alabama and Mississippi laws, which have not been amended since the 1970s, cover only state employees. Several states, such as New Jersey, cover all employers regardless of the number of employees. The laws in most states, however, cover only employers with a minimum number of employees. A few states, such as California and Vermont, expressly prohibit discrimination against cancer survivors. Many state laws protect individuals with real or perceived disabilities, and therefore, cover most cases of cancer-based discrimination. The rights of cancer survivors who do not have a physical or mental impairment (and would be considered non-“handicapped” in some states) are unclear in those states where courts have not addressed the issue. Many states have leave laws similar to the federal FMLA in that they guarantee employees in the private sector unpaid leave for pregnancy, childbirth, and the adoption of a child. Some state laws provide employees with medical leave to address a serious illness, such as cancer. Several states provide coverage more extensive than the federal law. State medical leave laws vary widely as to: how long an employee can take leave, which employees may take leave (most states require an employee to have worked for a minimum period of time), which employers must provide leave (a few states have leave laws that apply to employers of fewer than 50 employees), the definition of “family member” for whose illness an employee may take family medical leave, the type of illness that entitles an employee to medical leave, how much notice an employee must give prior to taking leave,
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whether an employee continues to receive benefits while on leave and who pays for them, and how the law is enforced (by state agency or through private lawsuit). HEALTH INSURANCE The Impact of Cancer on Health Insurance Employment rights and health insurance rights are closely related because most adult Americans receive health insurance through an employer’s group plan. Loss of health insurance may be secondary to loss of employment and employment discrimination. Many cancer survivors are unable to purchase affordable, effective coverage, especially those who are not covered by group policies. During the past decade, the way in which cancer survivors purchased and used health insurance, as well as the laws governing health insurance, have changed significantly (Hoffman, 1999). Adult and childhood cancer survivors share many of the same problems in accessing and keeping health insurance. Several studies of survivors of adult cancer have disclosed barriers to insurance, including refusal of new applications, policy cancellations or reductions, higher premiums, waived or excluded pre-existing conditions, and extended waiting periods: Nearly one-half of Hodgkin’s disease and leukemia survivors in one study reported insurance problems due to cancer. These problems include the denial of health insurance, increased insurance rates, problems changing from a group to an individual plan and lost health insurance (Kornblith et al., 1998). Approximately 25 percent of the 940 cancer patients surveyed by the Mayo Clinic Rehabilitation Program reported insurance “discrimination” (Crothers, 1986). Almost 30 percent of all employable cancer survivors in California reported encountering barriers to insurance (Burton and Jones, 1982). Among survivors of childhood cancer, health insurance problems are compounded, because most survivors have only family-related insurance before the onset of cancer (Hays, 1993). Like survivors of adult cancer, the more years that have passed since treatment, the more likely it is that childhood cancer survivors can obtain health insurance on the same terms as nonsurvivors. Adolescents and young adults may be especially vulnerable to insurance problems. When adolescents turn between 19 and 23 years of age (depending on the state), they may have to leave their parents’
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or public insurance coverage and have few options for obtaining their own health insurance (White, 2002). Several studies have documented insurance-related difficulties of childhood cancer survivors. In one study of 182 young adult survivors of childhood cancer in North Carolina, survivors were more likely than their siblings to be denied health insurance (25 vs 3 percent) and when insured were more likely to have pre-existing condition clauses in their health insurance policy (17 vs 12 percent) (Vann et al., 1995). In another study, adult long-term survivors of childhood cancer were covered by health insurance policies without cancer-related restrictions at similar rates to a control group (81 to 92 percent vs 82 to 95 percent) (Hays et al., 1992). Among survivors, 7 to 14 percent described difficulties experienced by their parents in obtaining affordable health insurance for the entire family during or after the survivor’s illness (as compared with 5 to 10 percent of the controls) (Hays et al., 1992). In another study, 14 percent of male survivors of childhood cancer and 9 percent of female survivors of childhood cancer were rejected for health insurance (as compared with 1 percent and none among the controls) (Teta et al., 1986). Cancer Survivors’ Health Insurance Rights Cancer survivors who have health insurance are entitled to all of the rights set forth in their policies. Insurers who fail to pay for treatment in accordance with the terms of the policies may be sued for violating the contract between the survivor and the insurer. Some survivors have successfully sued their insurers for breach of contract for failing to pay for chemotherapy, bone marrow transplants, and other treatment. Some survivors find that their policies have inadequate coverage for needed services. A health insurance policy may, for example, cover one prosthesis a year, but a growing adolescent may require more than one. Some survivors may have coverage for a needed service (e.g., neurocognitive testing), but the specialists needed to deliver it may not be available within a plan’s network of providers (John Fontanesi, Professor, University of California, San Diego, personal communication to Maria Hewitt, November 12, 2002). State and federal laws offer cancer survivors very limited remedies to overcome barriers in securing adequate health insurance coverage. Among those with insurance, there may be difficulties in getting reimbursement for interventions designed to prevent or ameliorate late effects of childhood cancer because of variations in the scope of benefits offered by plans. In a 1998 review of pediatric care coverage rules (i.e., medical necessity standards) specified in contracts of large commercial insurers, relatively few contracts (4 percent of those reviewed) were found to allow
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for services to prevent conditions, impairments, or disabilities (Fox and McManus, 2001). Federal Health Insurance Laws Four federal laws provide survivors some opportunities to keep health insurance that they obtain through work. Americans with Disabilities Act As noted above, the ADA (42 U.S.C. 12101 et seq.) prohibits employers from denying health insurance to cancer survivors if other employees with similar jobs receive insurance. The ADA does not require employers to provide health insurance, but when they choose to provide health insurance, they must do so fairly. An employer who does not provide a cancer survivor with the same health insurance provided to employees with similar jobs must prove that the failure to provide insurance is based on legitimate actuarial data or that the insurance plan would become bankrupt or suffer a drastic increase in premiums, copayments, or deductibles. An employer, such as a small business, who can prove that it is unable to obtain an insurance policy to cover the survivor, may not have to provide the survivor with the same health benefits provided to other employees. Because the ADA protects employees from discrimination based on their “association” with a person with a disability, an employer may not refuse to provide a family health policy solely because one of the employee’s dependents has cancer. Health Insurance Portability and Accountability Act (HIPAA) HIPPA helps cancer survivors retain their health insurance by: Alleviating “job-lock” by allowing individuals who have been insured for at least 12 months to change to a new job without losing coverage, even if they previously have been diagnosed with cancer. In addition, for previously uninsured individuals, group plans cannot impose pre-existing condition exclusions of more than 12 months for conditions for which medical advice, diagnosis, or treatment was received or recommended within the previous six months. Preventing group health plans from denying coverage based on health status factors such as current and past health, claims experience, medical history, and genetic information. Insurers, however, may uniformly exclude coverage for specific conditions and place lifetime caps on benefits. Increasing insurance portability for people changing from a group policy to an individual one. Requiring insurers of small groups to cover all interested small em-
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ployers and to accept every eligible individual under the employer’s plan who applies for coverage when first eligible. Requiring health plans to renew coverage for groups and individuals in most cases. Increasing the tax deduction for health insurance expenses available to self-employed individuals. The Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA) COBRA (PL 99-272) requires employers to offer group medical coverage to employees and their dependents who otherwise would have lost their group coverage due to individual circumstances. Public and private employers with more than 20 employees are required to make continued insurance coverage available to employees who quit, are terminated, or work reduced hours. Coverage must extend to surviving, divorced, or separated spouses, and to dependent children. By allowing survivors to keep group insurance coverage for a limited time, COBRA provides valuable time to shop for long-term coverage. Although the survivor, and not the former employer, must pay for the continued coverage, the rate may not exceed by more than 2 percent the rate set for the survivor’s former co-workers. Eligibility for the employee, spouse, and dependent child varies under COBRA. The employee becomes eligible if he or she loses group health coverage because of a reduction in hours or because of termination due to reasons other than gross employee misconduct. The spouse of an employee becomes eligible for any of four reasons: the death of a spouse, termination of a spouse’s employment (for reasons other than gross misconduct) or reduction in a spouse’s hours of employment, divorce or legal separation from a spouse, or a spouse becomes eligible for Medicare. The dependent child of an employee becomes eligible for any of five reasons: the death of a parent, the termination of a parent’s employment or reduction in a parent’s hours, a parent’s divorce or legal separation, a parent becomes eligible for Medicare, or a dependent ceases to be a “dependent child” under a specific group plan.
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FIGURE 7.1 Number of SSI recipients eligible because of a cancer diagnosis, by age. SOURCE: Social Security Bulletin, 2002. ments, but whose families have incomes too high for financial eligibility, can apply for a “Katie Beckett waiver” to allow Medicaid to pay for home and community-based care instead of care in an institution. Medicare Disability Program In 1972, Medicare eligibility expanded to include certain disabled individuals under the age of 65. Nonelderly individuals who have received Social Security Disability Insurance (SSDI) payments for 24 months are eligible, but must wait 5 months before receiving disability insurance benefits (they, in effect, must be disabled for 29 months). To be eligible for SSDI, individuals must have limited income and resources and a physical or mental impairment that keeps a person from performing any “substantial” work and is expected to last 12 months or result in death (Social Security Administration, 2002). Individuals diagnosed with end-stage renal disease (ESRD) are also eligible for Medicare regardless of age and financial status. Some adult childhood cancer survivors under age 65 could be eligible for Medicare if they qualified for SSDI or had ESRD. SSDI is an insurance program that provides payments to persons with disabilities based on their having been covered previously under the Social Security program, for example, through their employer. The SSI program is a means-tested income assistance program for disabled, blind, and aged persons who have
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limited income and resources regardless of their prior participation in the labor force. The definition of disability and the process of determining disability are the same for both programs (Institute of Medicine, 2002). By 2000, more than 5 million people under age 65 with disabilities or ESRD were enrolled in Medicare (Department of Health and Human Services, 2000). As of 2000, 142,000 individuals under age 65 were receiving SSDI payments because of cancer (of these, 136,000 were disabled workers and 1,700 were individuals disabled as children) (Social Security Bulletin, 2001). Only individuals receiving SSDI benefits for two years would be eligible for Medicare. Title V Programs Every state and the District of Columbia has a Title V2 Program for Children with Special Health Care Needs (CSHCN) that is funded, in part, through the federal Title V Maternal and Child Health Block Grant and provides health and support services to children with special needs and their families (http://www.mchb.hrsa.gov/programs/default.htm, assessed March 26, 2003). From the program’s inception through the mid 1970s, most of the state programs funded through Title V were called Crippled Children’s Services (CCS) Programs and focused their efforts on children with orthopedic problems. In the late 1970s Congress funded state CCS programs to provide case management and care coordination services to children under the age of 16 who received benefits from the SSI program (Schulzinger, 1999). As a result of this expansion, more children with chronic illnesses, developmental disabilities, sensory impairments, and other special health needs were being served and the name of the program was changed to State Programs for Children with Special Health Care Needs (CSHCN). In 1989, Congress amended Title V and required that state CSHCN programs “provide and promote family-centered, community-based, coordinated care (including care coordination services . . .) and to facilitate the development of community-based systems of services for such children and their families.” State programs now provide training, finance community support organizations, and promote policies to further coordination and communication. CSHCN programs also provide rehabilitation services to children under age 16 who are receiving SSI, when Medicaid does not pay for those services. 2 Title V refers to the Title of the Social Security Act, enacted in 1935, to provide funds to states to develop and operate public health care programs for certain children with special health care needs as well as to establish other programs to promote the health of low income mothers and children (http://www.mchb.hrsa.gov/programs/default.htm, accessed March 26, 2003)
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The federal legislation gives states flexibility to use their Title V funds to design and implement direct care programs and services that are responsive to the needs in their state. State programs have different financial and medical criteria and provide different kinds of health care and related services. According to published eligibility criteria for Title V programs, 8 states specifically include cancer as a qualifying condition, and 8 states specifically exclude cancer as a qualifying condition. In the 8 states for which cancer is excluded, some have eligibility criteria that could make services available to cancer survivors with late effects (e.g., cardiac, neurologic, and developmental delay) (Health Resources and Services Administration, 2000). In 1998, 517,000 children were served at a cost of $1.8 billion (an average of $3,557 per child) (Health Resources and Services Administration, 2000) (Table 7.1). The Maternal and Child Health Bureau and its key partners, including provider and consumer groups, have identified six core desirable outcomes for measurement as part of the Healthy People 2010 initiative (Health Resources and Services Administration, 2001): All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home. All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need. All children will be screened early and continuously for special health care needs. Families of children with special health care needs will partner in decision making at all levels and will be satisfied with the services they receive. Community-based service systems will be organized so families can use them easily. All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. A national communication strategy, efforts at capacity building, setting standards, and establishing accountability systems are among the activities planned to implement these goals (Health Resources and Services Administration, 2001). Issues Related to Managed Care Many children receive care through a managed care plan offered by either a private insurer, Medicaid, or S-CHIP plans. Improved access to primary care and coordination of care are potential benefits of managed
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TABLE 7.1 Children with Special Health Care Needs Served in FY 1998 by Each State and the Related Total and Per Child Expenditures Under the Title V Federal-State Block Grants Children with Special Health Care Needs Under Title V Federal-State Block Grants State Number of Children Served Expenditures FY 1998 (million) Average Expenditure per Child Served FY 1998 (million) Alabama 22,300 $16.9 $758 Alaska 2,458 5.1 2,075 Arizona 15,349 6.8 443 Arkansas 15,159 4.7 310 California 133,007 912.8 6,862 Colorado 8,272 6.5 786 Connecticut 5,284 3.3 625 Delaware 2,732 0.5 183 District of Columbia 892 1.9 2,130 Florida 47,581 102.8 2,161 Georgia 15,105 30.7 2,032 Hawaii 8,567 7.6 887 Idaho 2,276 2.1 923 Illinois 24,626 24.5 995 Indiana 9,314 19.3 2,072 Iowa 5,430 4.3 792 Kansas 10,972 3.2 292 Kentucky 16,060 9.1 567 Louisiana 8,466 9.5 1,122 Maine 2,247 3.4 1,513 Maryland 14,125 7.4 524 Massachusetts 22,988 29.3 1,275 Michigan 27,550 34.1 1,238 Minnesota 7,309 7.2 985 Mississippi 6,249 7.9 1,264 Missouri 5,647 7.0 1,240 care plans. There are, however, potential disadvantages within managed care plans for children with special health care needs who need specialized complex care. A work group convened by the federal Maternal and Child Health Bureau in 2000 reviewed managed care issues of concern to children with special health care needs. Problems in three areas were identified that are of relevance to childhood cancer survivors: capacity and expertise in managed care organizations, access to specialized pediatric services, and reimbursement (McManus et al., 2000) (Box 7.1). Recommended approaches that can be adopted by managed care plans
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Children with Special Health Care Needs Under Title V Federal-State Block Grants State Number of Children Served Expenditures FY 1998 (million) Average Expenditure per Child Served FY 1998 (million) Montana 1,379 1.5 1,088 Nebraska 4,097 2.0 488 Nevada 7,148 1.6 224 New Hampshire 4,238 3.1 732 New Jersey 67,839 8.6 127 New Mexico 12,256 4.6 375 New York 60,763 328.4 5,404 North Carolina 64,787 54.7 844 North Dakota 1,799 1.1 612 Ohio 31,572 32.7 1,036 Oklahoma 16,727 3.9 233 Oregon 7,748 3.3 426 Pennsylvania 33,593 11.5 342 Rhode Island 3,700 4.2 1,135 South Carolina 13,589 22.1 1,626 South Dakota 5,576 1.3 233 Tennessee 4,695 6.5 1,385 Texas 26,848 33.0 1,229 Utah 4,320 9.5 2,199 Vermont 3,624 1.5 414 Virginia 11,160 11.8 1,057 Washington 9,165 5.0 546 West Virginia 5,126 12.7 2,478 Wisconsin 1,896 5.5 2,901 Wyoming 3,137 2.3 733 TOTAL 517,423 1840.2 3557 SOURCE: Health Resources and Services Administration, 2000. to improve care for children with special health care needs include (Fox and McManus, 1998): ensuring that assigned primary care providers have appropriate training and experience, offering support systems for primary care practices, providing specialty consultation for primary care providers, establishing arrangements for the comanagement of primary and specialty pediatric services,
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Box 7.1 Managed Care Issues of Concern to Children with Special Health Care Needs Capacity and expertise in managed care organizations Shortages in certain pediatric medical and surgical subspecialists (e.g., neurologists, psychiatrists, and other mental health care providers) are being reported in certain parts of the United States. Comprehensive pediatric provider networks are not consistently available, making specialty referrals problematic. Oftentimes children with chronic conditions are referred to adult specialists who have limited experience and training in the care of childhood conditions. Many children with chronic conditions have difficulty obtaining medical homes because of the complexities of their care and the lack of adequate financial compensation. Few multidisciplinary practice arrangements exist to serve children with complex conditions. Case management in managed care organizations is often difficult to access and is generally limited to only high-cost children. These services focus on benefit management, not care coordination. Many families are assuming too much nursing care responsibility for their children with serious medical conditions. Access to specialized pediatric services There is enormous variation in utilization review and prior authorization criteria among managed care organizations, making it very burdensome for pediatricians and family physicians who contract with multiple plans and need approval for physician and other specialized services. arranging for comprehensive care coordination, establishing flexible service authorization policies, implementing provider profiling systems that adjust for pediatric case mix, creating financial incentives for serving children with special needs, and encouraging family involvement in plan operations. LIFE INSURANCE Obtaining life insurance coverage is difficult for survivors of childhood cancer largely because they have not established their careers and families at the time of their cancer diagnosis. They do not face financial and life planning issues until several years after their cancer treatment. Since life insurance plans are based on an actuarial risk of death (or survival), the
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Managed care plans often apply restrictive medical necessity criteria, limiting access to certain services (e.g., medication, therapies) or limiting the duration of treatment. Utilization management staff and case managers in managed care organizations often have limited knowledge about chronic childhood conditions. Communication between medical, behavioral, and educational service systems is oftentimes limited and administratively complex Reimbursement Pediatricians serving a disproportionate number of children with chronic conditions are experiencing serious financial difficulties because of the unreimbursed time and services they provide. Accepting full-risk capitation for children with chronic conditions is problematic since there are no reliable health risk adjusters for children. Reimbursement rates for all pediatric services are much lower than reimbursement rates for adult services Managed care organizations and other insurers often fail to reimburse certain Current procedural Terminology (CPT) codes that are needed for the treatment of chronic childhood conditions. These include, but are not limited to prolonged physician service without direct patient contact (99358, 99359); team conferences (99361, 99362); telephone calls (99371-99373); care plan oversight services (99374-99380); preventive medicine, individual counseling (99401-99404); and preventive medicine, group counseling (99411, 99412). Few insurers or managed care plans reimburse on the basis of resource-based relative value scale (RBRVS). SOURCE: McManus et al., 2000. cancer history is often taken into account because it increases the potential risk of death at an earlier age. Some life insurance companies will not insure cancer survivors, and others will charge very high premiums. Group life insurance (through employment) is a possible solution, since a health history is not usually required for such plans. SUMMARY AND CONCLUSIONS Since the early 1990s, significant progress has been made in improving the employment opportunities of cancer survivors. With the recent passage of federal laws such as the Americans with Disabilities Act and the Family and Medical Leave Act, as well as the expansion of many state laws, cancer survivors have gained new legal rights and remedies. Additionally, the rise of cancer survivorship advocacy has helped dispel the myths that fuel survivors’ employment problems.
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Providing better information to survivors regarding employment rights can lessen the effects of cancer on employment opportunities. From the time of diagnosis, all working-aged (or near working-age) survivors should receive from their cancer center and/or oncologist information about their legal rights, including information about how to avoid employment problems and how to respond to employment discrimination. Additionally, everyone who provides psychosocial support (such as oncology nurses, social workers, therapists, counselors, and peer support organizations) should be familiar with cancer survivors’ rights. These health care professionals often are survivors’ most important advocates in confronting the psychosocial consequences of cancer. Health care providers can further help their patients avoid job problems by educating employers about their patients’ prognoses, abilities, and limitations. The legal community should become more aware of how current laws apply to cancer survivors’ employment rights. Legal education programs to teach attorneys, state and federal enforcement agencies, and the judiciary how laws such as the ADA and FMLA apply to cancer-based discrimination could improve representation and formulation of legal judgments. Incidences of employment discrimination will probably decrease if more survivors prevail with their claims. An expansion of educational and direct services programs offered by cancer survivor advocacy organizations might also reduce and ultimately prevent employment discrimination. These programs could include attorney referral programs, personal advocacy assistance, workplace counseling to teach employers about the abilities and needs of cancer survivors to mitigate discrimination and to encourage the development of reasonable accommodations, and public educational materials and programs. Any service program must be able to meet the needs of minority populations that may have language and/or cultural barriers, in addition to their cancer history. The goal of any health insurance reform should be to ensure that all Americans, regardless of medical history or employment status, have access to affordable, quality medical care. Broad-based national health insurance reform is unlikely to take place in the near future. Instead, cancer survivors’ best hope for significant insurance reform rests with federal and state legislation that targets specific issues. Because federal legislation generally covers only federal programs, such as Medicare and Medicaid, many insurance reforms must be addressed at the state level. In some cases, states could, for example, expand access to health insurance through increased support of state high-risk insurance pools. Health insurance reforms to improve patient protections must be considered carefully because when reforms increase the costs of insurance products, reforms can have the unintended consequence of higher rates of uninsurance
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Medicaid and Medicare are federally supported programs that provide health insurance to at least some cancer survivors, by virtue of either low income and limited assets or disability. Cancer survivors, if disabled and with limited means, may receive cash assistance or income support through the SSI and SSDI programs. Eligibility for these programs may open the door to health insurance coverage through the Medicaid or Medicare programs. Other state-based programs such as the Title V Children with Special Health Needs programs can provide services such as assistance with health care and rehabilitation, care coordination, and case management. State-based demonstration projects supported through HRSA’s Special Projects of Regional and National Significance (SPRANS) and Community Integrated Service Systems (CISS) grants may offer opportunities to learn more about effective health service delivery strategies of relevance to childhood cancer survivors (see description of these grants in Chapter 8). REFERENCES Achman L, Chollet D. 2001. Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools. Mathematica Policy Research, Inc. Princeton NJ (http://www.mathematica-mpr.com/3rdlevel/uninsurablehot.htm, last accessed March 21, 2003). Burton L, Jones J. 1982. The Incidence of Insurance Barriers and Employment Discrimination Among Californians With Cancer Health History in 1983. Oakland, CA: California Division of the American Cancer Society. Centers for Medicare and Medicaid Services. 2002. State Children’s Health Insurance Program: Fiscal Year 2001 Annual Enrollment Report. Washington, DC: U.S. DHHS. Crothers, H.M. 1986. Employment Problems of Cancer Survivors: Local Program and Local Solutions, Proceedings of the Workshop on Employment Insurance and the Patient With Cancer. Atlanta, GA: American Cancer Society. Department of Health and Human Services, HCFA. 2000. Medicare 2000:35 Years of Improving Americans’ Health and Security. Washington, DC. Department of Health and Human Services, CMS. 2002. HHS to Help States Create High-Risk Pools to Increase Access to Health Coverage. Press release, November 26, 2002. (www.hhs.gov/news/press/2002pres/20021126a.html, last accessed January 31, 2003). Ferrell BR, Hassey Dow K. 1997. Quality of life among long-term cancer survivors. Oncology (Huntingt) 11(4):565-8, 571; discussion 572, 575-6. Fobair P, Hoppe RT, Bloom J, Cox R, Varghese A, Spiegel D. 1986. Psychosocial problems among survivors of Hodgkin’s disease. J Clin Oncol 4(5):805-14. Fox HB, McManus MA. 1998. Improving state Medicaid contracts and plan practices for children with special needs. Future Child 8(2):105-18. Fox HB, McManus MA. 2001. A national study of commercial health insurance and Medicaid definitions of medical necessity: what do they mean for children? Ambul Pediatr 1(1):16-22. Green DM, Zevon MA, Hall B. 1991. Achievement of life goals by adult survivors of modern treatment for childhood cancer. Cancer 67(1):206-13. Hays DM. 1993. Adult survivors of childhood cancer. Employment and insurance issues in different age groups. Cancer 71(10 Suppl):3306-9.
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