Rutgers School of Law, 123 Washington Street, Newark, NJ, USA
126.96.36.199 Americans with Disabilities Act
188.8.131.52 Family and Medical Leave Act
184.108.40.206 Genetic Information
220.127.116.11 State Employment Rights Laws
21.5 Health Insurance
18.104.22.168 Federal Health Insurance Laws
22.214.171.124 State Insurance Laws
21.6 Right to Education
A growing number of children in the United States are being diagnosed with and successfully treated for cancer. Approximately 83 % of all children diagnosed with cancer can expect to become long-term survivors . Unlike adult survivors, whose average age of diagnosis is near retirement age, most childhood survivors offer decades of productive employment after cancer . Young adult survivors entering the job market for the first time are a rapidly growing population. By 2010, approximately one of every 450 young adults was a childhood cancer survivor . Although survivors once commonly experienced cancer-related barriers to employment, improvements in medical treatment and legal rights have reduced these barriers considerably.
This chapter reviews current studies of employment problems reported by cancer survivors, lists legal resources available for those whose rights have been violated, and provides suggestions for how to avoid and address these problems. This chapter also discusses childhood cancer survivors’ rights to health insurance and education, referring to American law in effect in 2013.
21.2 The Scope of Cancer-Based Employment Problems
Of the more than 13.7 million cancer survivors in the United States, roughly one-half are of working age . The majority of these individuals are willing and able to work . Because of significant improvements in cancer care, most working-aged adults can work during and after cancer treatment . For example, one survey of 10 studies that assessed return-to-work rates of 1,904 survivors from 1986 to 1999 found that a mean of 62 % returned to work .
The work issues of childhood cancer survivors differ somewhat from those of adult cancer survivors. Because childhood survivors first enter the workplace after diagnosis, they are often more concerned with how to obtain a job than with how to keep a job. Although many childhood survivors do not enter the job market for years or even decades after their diagnoses, some may find that their cancer histories affect their employability at any stage of their careers.
Most employers treat cancer survivors fairly and legally. Some employers, however, erect unnecessary and sometimes illegal barriers to job opportunities. Most personnel decisions are driven by economic factors, not by charitable or personal consideration. Employers may fear that an employee with a cancer history may affect insurance costs or be a less productive employee. Additionally, some employers fail to revise their personnel policies to comply with current antidiscrimination law. Even those who have updated personnel policies may not properly train their personnel managers to comply with these laws.
21.2.1 The Types of Employment Problems Encountered by Cancer Survivors
The employment problems of cancer survivors take many forms. A cancer diagnosis may affect any type of job action, including dismissal, failure to hire, demotion, denial of promotion, undesirable transfer, denial of benefits, and hostility in the workplace. Disparate treatments, such as blanket hiring bans against all individuals with a cancer history, are irrational and blatant. Other employment decisions, especially actions by legally sophisticated employers, are far more subtle.
Some survivors experience significant physical or mental limitations that affect their ability to work [8, 9]. One estimate is that 16.8 % of working-age survivors (compared with 5 % of matched controls) are unable to work because of physical, mental, or emotional problems; of those who could work, 7.4 % (compared with 3.2 % of matched controls) were limited in the kind or amount of work they could do .
Whether a cancer survivor continues to work during treatment or returns to work after treatment—and if so, whether that survivor’s diagnosis or treatment will result in working limitations—depends on medical and socioeconomic factors:
Factors that affect a cancer survivor’s ability to work .
Essential job functions
Type of cancer
Stage of cancer
Access to health insurance
Side effects of treatment
Access to transportation
Medical leave benefits
Other chronic health conditions
Access to quality cancer care
21.2.2 The Numbers of Cancer Survivors Who Encounter Employment Problems
Prior to the passage of state and federal employment rights laws, employment discrimination against cancer survivors was common. Such discrimination can have devastating physical, emotional, and financial consequences .
Survivors of childhood cancer once experienced significant employment problems similar to those encountered by adult cancer patients. For example, a 1986 Stanford study found that 43 % of 403 Hodgkin’s disease survivors experienced difficulties at work that they attributed to their cancer history . A 1982 study by Koocher and O’Malley of 60 childhood cancer survivors found that 25 % 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) . A 1986 study by Teta found a large disparity in the civilian and military employment rates of childhood cancer survivors compared with their siblings . Eighty percent of the male survivors were rejected from the military compared with 18 % of their siblings, and 32 % were rejected from job opportunities compared with 19 % of their siblings. Although female survivors faced disproportionate rejection from the military (75 % compared with 13 % for siblings), the percentage of women rejected from employment was the same for survivors as for their siblings (19 %).
Hays and colleagues surveyed 219 childhood survivors and matched controls who were treated between 1945 and 1975 and were at least 30 years old at the time of the survey . They found that childhood survivors, with the exception of survivors of central nervous system tumors, experienced relatively the same employment history as the controls . The controls, however, reported somewhat more annual income than did the survivors . Hays’ results suggest that as the length of time between diagnosis and initial employment increases, the incidence of employment problems may decrease.
Only those survivors who sought entry into the military faced increased rates of discrimination (15.2 % of survivors at one institute and 20.7 % at another versus 7.7 % and 1.8 %, respectively, of the controls). Although the Department of Defense presumes cancer survivors to be unfit for military service, it considers waivers on a case-by-case basis for childhood survivors of acute lymphoblastic leukemia who have not had a recurrence and for other survivors who have been out of treatment and cancer-free for 5 years (2 years for Wilms’ tumor, large-cell lymphoma, and germ cell tumors of the testes).
But with the passage of the Americans with Disabilities Act in 1990 and comparable state laws, as well as a sea change in perceptions about living with and beyond cancer, survivors have reported decreasing incidences of work problems attributable to their cancer .
A 2006 national survey of cancer survivors found that most employers appear to be highly sensitive and accommodating to the needs of employees who have cancer and to employees who are caregivers for cancer survivors . Three out of five survivors reported receiving coworker support, such as help with work or random acts of kindness. Survivors and caregivers reported very low incidences of negative reactions from their employers and coworkers. The most common negative reaction, reported by one in five survivors, was that an employer gave a survivor less work after diagnosis. Other consequences, such as being fired or laid off (6 %), denied a raise or promotion (7 %), and denied health insurance benefits (4 %), were far less common.
A 2010 study that compared 410 childhood cancer survivors with almost 300,000 controls found that although most childhood cancer survivors were employed as adults, they had lower employment rates than controls.
Employment rates of childhood cancer survivors and controls .
Childhood cancer survivors
% who held a job in past 12 months
% unable to work due to health problems
% limited in amount/kind of work because of health problems
Although incidences of cancer-based employment discrimination have decreased, some survivors still face disparate treatment and seek legal redress. Between 1997 and 2011, 2.3–3.9 % of claims brought under Title I of the ADA alleged “cancer” as a disability .
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21.3 Laws Governing Cancer-Based Discrimination
21.3.1 When Cancer-Based Discrimination Is Illegal
Under federal law and most state laws, an employer cannot treat a survivor differently from other workers in job-related activities because of his or her cancer history, provided the survivor is qualified for the job. Individuals are protected by these laws only if:
They can do the major duties of the job in question.
Their employer treated them differently from other workers in job-related activities because of their cancer history.
126.96.36.199 Americans with Disabilities Act
The Americans with Disabilities Act (ADA) prohibits some types of job discrimination by employers, employment agencies, and labor unions against people who have or 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,” with 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 caring for oneself, walking, breathing, or working.
Cancer is an “impairment” as defined by 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, the Equal Employment Opportunities Commission (EEOC) regulations that interpret the ADA consider cancer under most circumstances to be a disability under the ADA. Whether a cancer survivor is covered by the ADA is determined, however, on a case-by-case basis.
The ADA prohibits discrimination in most job-related activities such as hiring, dismissal, 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 employer may replace a survivor who misses 6 months of work that cannot be performed by a temporary employee.
The ADA does not prohibit an employer from ever dismissing 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 dismissed even if he or she were 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 will be affected by the need to care for a family member who has cancer.
188.8.131.52 Family and Medical Leave Act
The Family and Medical Leave Act (FMLA) requires employers with at least 50 workers to provide employees up to 12 weeks of unpaid leave for serious medical illness, including cancer, to care for themselves or dependents. The FMLA provides a number of benefits to people with cancer:
Requires employers to continue to provide benefits, including health insurance coverage, during the leave period.
Provides 12 weeks of unpaid leave during any 12-month 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 an 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.
Allows employees to stack leave under the FMLA with leave allowable under the state medical leave law.
The FMLA reasonably balances the needs of the employer and employee because it:
Requires employees to make reasonable efforts to schedule foreseeable medical care to minimize workplace disruption
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
Permits employers to provide leave provisions more generous than those required by the FMLA
184.108.40.206 Employee Retirement and Income Security Act
The Employee Retirement and Income Security Act (ERISA) may provide a remedy to an employee who has been denied full participation in an employee benefit plan because of a cancer history. ERISA prohibits an employer from discriminating against an employee for the purpose of preventing him or her from collecting benefits under an employee benefit plan. For example, some employers fear that the participation of a cancer survivor in a group medical plan will increase the employer’s insurance costs. An employer may violate ERISA if, upon learning of a worker’s cancer history, it dismisses that worker for the purpose of excluding him or her from a group health plan.
220.127.116.11 Genetic Information
With the growth of genetic testing, many cancer survivors are concerned that employers will use genetic information as a basis for discrimination. The Genetic Information Nondiscrimination Act (GINA) prohibits an employer, employment agency, labor organization, or training program from using genetic information to make decisions regarding hiring, promotion, terms or conditions, privileges of employment, compensation, or termination. GINA protects employees from discrimination based on the result of a genetic test and information about a family history of a disease. It does not, however, protect employees from discrimination because of a manifested disease or condition. GINA covers the same employers that are covered under the ADA (those with at least 15 employees). An employee who has a genetic predisposition to a disease or condition may still qualify for family or medical leave and may participate in an employer-sponsored wellness program or other genetic services—such as tests, counseling, and education—offered by an employer. The employment provisions of GINA do not interfere with an employee’s right to protection under state genetic discrimination laws.
18.104.22.168 State Employment Rights Laws
Every state has a law that regulates, to some extent, disability-based employment discrimination. Some laws clearly prohibit cancer-based discrimination, while others have never been applied to cancer-based discrimination. State laws also vary as to which employers—public or private, large or small—must obey the law.
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 small number of states, such as California, Florida, Vermont, and West Virginia, 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 impaired are unclear in those states where courts have not addressed the issue and where one must have a physical or mental impairment to bring a claim.
Many states have leave laws similar to the federal Family and Medical Leave Act 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 may 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
Whether an employee continues to receive benefits while on leave and who pays for them
How the law is enforced (by state agency or through private lawsuit)
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