Cancer Survivors’ Employment and Insurance Rights: A Primer for Oncologists

Introduction

During the past decade, cancer survivors have witnessed a revolution in their access to equal employment opportunities and adequate health insurance. With the passage of several federal and state laws, survivors now enjoy the coverage of civil rights laws designed to protect people with disabilities and serious medical conditions from discrimination.

While survivors’ employment prospects have improved, however, their insurance options have diminished. The dramatic shift from fee-for-service to managed care plans has ushered in a stressful, frustrating period of decreased access to ever-improving oncology care.

Working-aged survivors find that their cancer experience affects their access to employment and health insurance.[1] The remarks of a bone marrow transplant survivor—“I have not been able to return to work and must depend on my wife to support our family”[2]—illustrate the far-reaching impact that cancer can have on an individual’s quality of life. This article reviews the problems faced by cancer survivors in obtaining and keeping adequate employment and health insurance, explains the legal rights of survivors, and suggests ways that survivors and their caregivers can advocate for their rights.

Employment

Impact of Cancer on Employment

Coping with the diagnosis and treatment of cancer can be a full-time job, and yet few adults have the financial stability to give up their employment during and after their cancer treatment. Most survivors need to retain their employment status not only for the obvious financial benefit but also for the accompanying health insurance, self-esteem, and social support.

Some employers and coworkers treat cancer survivors differently from other workers. Workplace problems most frequently reported by cancer survivors include dismissal, failure to hire, demotion, denial of promotion, undesirable transfer, denial of benefits, and hostility in the workplace.[3]

A random telephone survey, conducted in 1996, questioned 500 cancer survivors who were employed at the time of their treatment, 100 supervisors, and 100 coworkers.[4] The workers with cancer reported being fired or laid off at five times the rate of other workers in the United States (7% vs 1.3%).[4]

A follow-up, random telephone survey, conducted in June 1997, interviewed 662 employed adult Americans who had not previously been diagnosed with cancer. This survey found that 41% worried about losing their job if they were to be diagnosed with cancer, and 14% stated that they were “very worried.”[5]Their fear of discrimination was so great that 18% of respondents said that, if they were diagnosed with cancer, they would not disclose this information to anyone at work.[5]

An earlier survey of Hodgkin’s disease and leukemia survivors indicated that more than one-third attributed at least one negative vocational (employment, income, or education) problem to their cancer.[6]

One reason survivors legitimately fear discrimination at work is because their supervisors and coworkers have misconceptions about survivors’ abilities to work during and after cancer treatment. Of the 200 supervisors questioned in the 1996 survey, 33% believed that the survivor could not handle the job and cancer; 31% thought that the employee needed to be replaced.[4] After working with a survivor, 34% of supervisors and 43% of coworkers said that they would be less concerned about working with a survivor in the future.[4]

A 1992 (unpublished) survey of 200 supervisors, conducted by the public relations firm of Yankelovich, Clancy & Shulman, found that 66% were concerned that employees with cancer could no longer perform their jobs adequately. Nearly one-half of respondents said that a current cancer diagnosis would affect their decision to hire a qualified applicant. Of the 500 employees surveyed, 13% believed that coworkers with cancer probably would not be able to do their jobs. One in four coworkers thought that they would have to work harder to pick up the slack.

In quality-of-life assessments of cancer survivors, survivors report that being able to work full-time and have an “enjoyable” job contribute to a better quality of life.[2] One survivor commented that her quality of life was improved by “being able to work productively and hav[ing] good emotional relationships and . . . some sense of purpose.”[7] Survivors reported that work provided not only an important source of emotional and financial support but also a “sense of normalcy.”[7] Others noted the sense of control that work provided: “I think that the need to go back to work or to stay at work depending on your treatment, is extremely important. . . .I at least had control over that. I could go to work.”[7]

The physical and emotional demands of cancer treatment make it difficult for many survivors to work without interrupting their previous employment schedule. Survivors of thyroid cancer reported that “work productivity, concentration, and quality changed dramatically” within a few weeks of discontinuing thyroid hormone medication.[8] Some literally had to be carried home from work.[8] Fatigue resulting from cancer treatment affects survivors’ work performance.[9] One exhausted survivor commented, “I struggled to maintain my part-time job with integrity, poised on the edge of depression.”[9]

Most employers treat cancer survivors fairly and legally. Some employers, however, erect unnecessary and sometimes illegal barriers to survivors’ job opportunities. Most personnel decisions are driven by economic factors, not by charitable or personal considerations. Some employers face increased costs due to insurance expenses and lost productivity. Other employers worry about the psychological impact of a survivors’ cancer history on other employees. Some employers fail to revise their personnel policies to comply with new laws. Employers who have updated personnel policies may not properly train their personnel managers to comply with these laws.

Cancer Survivors’Employment Rights

Although cancer survivors do not have an unqualified right to obtain and retain employment, they do have the right to be treated according to their individual abilities and to have some freedom from discrimination. Two federal laws, the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA), provide cancer survivors with some protection against employment discrimination.

The Americans with Disabilities Act prohibits some types of job discrimination by employers, employment agencies, and labor unions against people who have or have had cancer.[10] (The ADA also protects cancer survivors from discrimination in insurance and adoption.) 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,” those with a “record” of a “disability,” or those who are “regarded” as having a “disability.” A “disability” is defined as a major health “impairment” that substantially limits the individual’s ability to carry out everyday activities, such as driving a car or going to work.

Cancer is an “impairment” as defined by the law. In most circumstances, cancer survivors, regardless of whether they are receiving treatment, are in remission, or are cured, are protected as persons with a disability because their cancer substantially limits a major life activity.

Although many courts have fairly assessed cancer’s impact on a survivor’s life and have ordered employers to pay damages for violating their employees’ rights, other courts have boxed survivors into a Catch-22. Some courts have considered survivors who could not perform their essential job duties as “not qualified” under the ADA, and yet have deemed survivors who could work as “not substantially limited.”[11] For example, one court ruled that a fired breast cancer survivor was not a person with a “disability” as defined by the ADA because, although her breast cancer was an “impairment” under the ADA, it did not substantially limit her major life activity of working.[12] Courts that have so interpreted the ADA have suggested that survivors could seldom benefit from the ADA either because they are too ill to work or are too healthy to be considered disabled.

Although courts must consider whether a cancer survivor meets the definition for having a disability on a case-by-case basis, the guidelines developed by the Equal Employment Opportunities Commission (EEOC)* and a recent ruling by the United States Supreme Court[13] indicate that, in most circumstances, cancer is a disability under the ADA. On June 25, 1998, the United States Supreme Court ruled in Bragdon v Abbott that a woman who was infected with the human immunodeficiency (HIV) virus, but had no symptoms of acquired immune deficiency syndrome (AIDS), had a disability under the ADA.

*The EEOC issues detailed regulations that it uses to enforce the ADA. The regulations specifically cover cancer survivors as the type of “individuals who have recovered from a physical...impairment that previously substantially limited them in a major life activity” (28 CFR 35.104).

Although Bragdon v Abbott was not specifically about cancer, the opinion makes three key points that will help cancer survivors in future cases. First, in deciding whether a person is covered by the ADA, federal courts should give great deference to federal regulations that interpret the ADA. These regulations state that cancer is a physical impairment, give examples of situations in which cancer-based discrimination is illegal, and reject a Catch-22 interpretation of disability.

Second, infections, such as HIV, are covered by the ADA because they have a constant, detrimental effect on the infected person’s hematologic and lymphatic systems from the moment of infection. Many cancers similarly affect the hematologic and lymphatic systems.

Third, reproduction is a major life activity, and, thus, someone with HIV, who is substantially limited from reproducing, is protected by the ADA. The person need not be totally unable to engage in a major life activity, such as work or reproduction. Many cancer survivors face similar obstacles to work and reproduction.

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 whether applicants are able to perform the essential functions of the job. A job offer may be contingent upon passing a relevant medical examination, provided that all prospective employees are subject to the same examination. 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 pose 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 employer may replace a survivor who has to miss 6 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 were not a survivor.

The ADA does not require employers to provide health insurance, but when they choose to provide such insurance, they must do so fairly. An employer may not refuse to cover a cancer survivor under a group health plan unless the employer can show that the failure to provide health insurance is based on legitimate actuarial data that the insurance plan would go broke or suffer a drastic increase in premiums, copayments, or deductibles.

Most employment discrimination laws protect only the employee. The ADA offers protection that is more responsive to survivors’ needs because it also prohibits discrimination against family members. 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.

The Family and Medical Leave Act[14] requires employers with at least 50 workers to provide employees with up to 12 weeks of unpaid leave to receive treatment for their or their dependent’s serious medical illness, including cancer.

State Laws—In addition to these federal statutes, every state has a law that prohibits discrimination against the disabled. Most state laws cover both public and private employers, and many cover employers with fewer than 15 employees. A small number of states, such as California, expressly prohibit discrimination based on cancer history. 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 are not “handicapped” are unclear in those states in which courts have not addressed the issue and one must have a physical or mental impairment to bring a claim. Furthermore, many states have medical leave laws, some of which provide more generous leave than the FMLA.