We sought to determine whether patients undergoing treatment for cancer had experienced discrimination in employment and, if so, how that discrimination was manifested. We also sought to determine what variables affected the rate of discrimination, including age, gender, occupation, and employer size.
We sought to determine whether patients undergoing treatment for cancer had experienced discrimination in employment and, if so, how that discrimination was manifested. We also sought to determine what variables affected the rate of discrimination, including age, gender, occupation, and employer size. We surveyed 422 patients diagnosed with cancer who were being treated at an acute-care, comprehensive cancer center in Houston, Texas, or were being followed after therapy. Whereas 76% of respondents indicated that they were working at the time of diagnosis and 82% said that they wanted to work full- or part-time, only 56% were working at the time of the study. Type of occupation was the main determinant of whether individuals were employed after diagnosis. The study documents self-reported discrimination in employment on the basis of cancer. Additional research is needed to determine the measures, including legal recourse, necessary to enable cancer patients to obtain and continue work.
A large body of anecdotal evidence indicates that individuals with a wide range of illnesses are subject to discrimination in employment. Individuals with the most serious illnesses, such as heart disease, cancer, and HIV infection, are more likely to be denied employment, treated less favorably on the job, refused promotions, or wrongfully discharged than are individuals with less serious illnesses or no illness at all .
Public attention to the problem of employment discrimination against people with disabilities was heightened with the enactment of the Americans with Disabilities Act (ADA) in 1990 . Title I of the ADA, which took effect in 1992, prohibits employment discrimination on the basis of disability by private- and public-sector employers. To be covered under the ADA, an individual must have a physical or mental impairment that substantially limits one or more major life activities, have a history of such an impairment, or be regarded as having such an impairment. Current, former, and perceived cancer patients are covered under this broad definition.
The ADA prohibits employment discrimination against individuals who, with or without reasonable accommodation, are able to perform the essential functions of a particular job. Employers are required to make reasonable accommodations, such as building ramps, modifying equipment or devices, altering job responsibilities, and providing part-time or modified work schedules. Nevertheless, employers are not required to provide any accommodation that will result in undue hardship, which is based on the nature and cost of the accommodation and the size and financial ability of the employer.
In 1994, there were 1,092 federal complaints filed alleging cancer-based discrimination in employment. This represented 2.4% of all federal disability discrimination complaints (personal communication, David Gruenberg, Office of Information, Equal Employment Opportunity Commission (EEOC), June 14, 1995).
Although this represents a substantial number of complaints, there are three reasons why there may be considerably more cancer-based discrimination in employment. First, there are numerous potential victims of discrimination. In 1995, about 1.2 million Americans will be diagnosed with cancer, excluding basal and squamous cell skin cancer and carcinoma in situ, and there will be over 5 million Americans who are cancer survivors for more than 5 years . Second, there is still much stigma associated with cancer . Third, because of the high cost of cancer treatment, employers have a great financial incentive to get employees with cancer off their health insurance rolls . For example, treatment of breast cancer with high-dose chemotherapy and autologous bone marrow transplants may cost $100,000 to $150,000 .
We undertook a study to determine whether cancer patients currently being treated at the University of Texas M.D. Anderson Cancer Center (UTMDACC) or being followed after treatment had experienced discrimination in employment because of their diagnosis. We sought to determine, among other things, the extent, nature, and form of discrimination, as well as the characteristics of the employee and employer that made a self-report of discrimination more or less likely to occur.
The University of Texas M.D. Anderson Cancer Center is a 518-bed, acute-care, comprehensive cancer center in Houston, Texas. During a 4-month period (May 2, 1992, through September 23, 1992), we surveyed patients diagnosed with cancer about their employability. Study subjects completed a self-administered, 19-item questionnaire designed to assess their perceived employment discrimination associated with a diagnosis or history of cancer. The questionnaire also was designed to determine the demand for educational materials and programs to assist patients in finding jobs following diagnosis and treatment.
All study subjects took part voluntarily. All those agreeing to participate were receiving outpatient treatment or follow-up at one of the major outpatient clinics at UTMDACC. Two patient groups were specifically excluded, however: (1) patients less than 18 years of age and (2) patients with diagnosed brain tumors. These groups were excluded because their employment rates already were quite low. The cases who participated in the study were comparable to individuals who chose not to participate with regard to age, gender, and length of treatment in each clinic area.
Questionnaires also were distributed to Anderson Network members through the assistance of the UTMDACC Volunteer Services Department. Anderson Network is an organization of current patients as well as individuals who have already completed their treatment at UTMDACC.
Table 1 summarizes the demographic characteristics of the study population. Of the 422 participants, 76% indicated that they had been employed when the diagnosis of cancer was made. Nearly half (48%) of the participants indicated that their current or last position was as an executive or professional (Table 2). At the time of completing the questionnaire, 56% said that they were employed on a full- or part-time basis (Table 3). Study participants were not asked to divulge the length or specific type of employment.
Of respondents less than 65 years old, 64% had been working when diagnosed with cancer and still remained employed. Of 88 study participants 65 years of age or older, 57 (65%) indicated that they were employed when diagnosed with cancer. Of these individuals, nearly 50% were still employed at the time of completion of the questionnaire. The other 50% had elected to retire, were terminated, or left their jobs because of prolonged treatment.
Participants were asked to describe the effect of cancer and its treatment on their ability to work. A total of 226 respondents (54%) reported that cancer treatment had not limited their ability to work, although they were not asked to specify whether they could still perform their old job. In addition, 311 individuals reported that they were able to work in some capacity at the time of the study. Of these 311 people, 96 (31%) stated that they could work part-time or part-time flex, and 215 people (69%) said they could work full-time, flex-time, full-time flex, or anytime (Table 4). Nevertheless, 183 respondents (44%) reported that they were not working at the time of the study. The percentage of individuals who were working (56%) contrasts with the figure of 82% of respondents who stated that they wanted to continue working or return to work.
Among individuals who were seeking a new job, 12% cited their cancer diagnosis as the reason why they were not hired. As discussed below, the cancer diagnosis also may adversely affect employment opportunities in other ways.
Job Duty Reassignment and Accommodations
Under the ADA, it is unlawful to limit or reassign the duties of an individual with a disability based on presumptions about his or her ability to perform the job. In this study, 36% of the males and 24% of the females indicated that some of their prior job duties had been reassigned to others. Whether the duties were given to others because of an actual or a presumed inability to perform the tasks was not addressed. When we analyzed those results by job title, as discussed below, we found that more males held positions in which job responsibilities were reassigned. Thus, gender was not a determinative factor.
Laborers (47%) were most likely to have some of their job duties given to others, whereas professionals (21%) were least likely to have their job duties reassigned. Such a finding was expected, however, because laborers have the most physically demanding jobs and because professionals are more likely to have unique skills and experience that is not as easily replaced by another individual. Although male employees (23%) were more likely than female employees (16%) to be reassigned to a different position, this result was attributable almost entirely to the type of job held.
Reassignment of an employee to a different job or reassignment of some of that person's responsibilities to other employees may be unfair and discriminatory in some instances. In other cases, however, these actions may be considered a reasonable accommodation that is beneficial to the employee. In this study, 35% of the respondents said that the reassignment was beneficial.
Availability of Flex-Time Option
Another common response to the inability to perform prior job tasks because of illness is the use of flex-time--the ability to alter one's work hours and make up missed time. Workers in the service industry, including police, health services, and personal services, were most likely to be afforded flex-time by their employers. Laborers were the least likely to be offered flex-time opportunities. This result was consistent with predictions, because laborers often have defined shifts that preclude flex-time. Although 32% of females vs only 16% of males were offered flex-time, this finding can be explained by the heavier concentration of males in laborer positions.
Impact of Employer Size
We hypothesized that employer size would be a significant determinant in the treatment of employees with cancer, such as reassignment of duties and flexibility in scheduling. This hypothesis was borne out by the study data.
Altered Benefits--The largest employers (ie, those with 250+ employees) were more likely than smaller employers to treat employees differently. Among the ways in which employees were treated differently was that their benefits were altered. Approximately 22% of respondents stated that the altered benefits were beneficial to them.
Job Mobility--By contrast, of respondents employed by companies with 10 or fewer employees, 40% said they remained at their current jobs because of health insurance. This figure is especially significant because only about 50% of all small employers offer health insurance. Thus, a very high percentage of individuals employed in certain sectors of the economy characterized by small employer size and the lack of health insurance coverage (such as the service sector) chose to remain with their prior employer to maintain their health benefits.
Regardless of employer size or the pervasiveness of health insurance coverage in an industry, this study showed that the use of preexisting conditions clauses and exclusion waivers by commercial health insurance companies and self-insured employers discouraged occupational mobility. The "job lock" percentage for respondents correlated closely with the percentage of employers offering health insurance benefits. Thus, 78% of respondents employed by companies with 101 to 250 employees and 88% of respondents employed by companies with more than 250 employees said that health insurance was a primary reason for remaining in their current position. Overall, 58% of study participants said that they would not leave their current positions because of health insurance.
Employer Flexibility--Employer size also played a significant role in the availability of other employment benefits, but contrary to our hypothesis, smaller employers tended to be more flexible than larger employers. For example, 44% of respondents working for companies with 10 or fewer employees said that flex-time was available. This percentage decreased to 21% for respondents working for companies with 26 to 100 employees, and further decreased to 16% among respondents working for companies with more than 250 employees.
These results were unexpected for two main reasons: First, more flexible hours and work assignments would seem to be more difficult to arrange at a company with fewer employees. Second, neither the ADA nor Texas state disabilities law covers employees who work for employers with fewer than 15 employees (and before July 29, 1994, the minimum number of employees for coverage under the ADA was 25). Thus, smaller employers were under no legal obligation to provide reasonable accommodations, flex-time, and job reassignment.
These counterintuitive results may be explained by two other factors, however. First, flex-time may be difficult to administer at larger companies where many employees are seeking to use it at once, and these companies are more likely to have formal personnel policies in place to regulate such exceptional circumstances. Second, in the open-ended comment section of our survey, some respondents stated that smaller employers provided a family-type atmosphere and were more personally supportive of schedule changes.
Reassignment and Discharge--The relationship of employer size to reassignment of job duties was more in line with our expectations. Of respondents employed by the smallest companies (with 10 or fewer employees), 22% said that their job duties were changed. In contrast, 44% of those employed by the largest companies (more than 250 employees) reported a change in job duties. We assume that larger companies had more personnel among which to allocate the responsibilities. Nevertheless, roughly the same percentage of respondents from both large and small companies said that the reassignment of their duties was beneficial.
Finally, we asked respondents if they believed their diagnosis of cancer, caused their employer to discharge them. Although a relatively high percentage of individuals thought they had been discharged because of their cancer, the size of the employer was not a factor. A total of 56 employees (25%) who worked for the smallest companies were discharged, which is comparable to the 60 respondents (27%) fired from jobs at the largest companies.
The study confirmed many of our hypotheses regarding the effect of cancer on employment opportunities. Study participants reported a variety of differences in their treatment by employers after being diagnosed with cancer, ranging from reassignment of job responsibilities to discharge. Even though only a little more than half of the respondents (56%) were working at the time of the study, 69% said they were able to work full-time and 96% said they could work at least part-time.
Although a clear inference could be made from our data that cancer patients were not being afforded employment opportunities commensurate with their abilities, these data must be considered with some degree of caution. The study measured patients' subjective perceptions of their own employability, and therefore at least some of the positive responses could result from denial about the deleterious effects of their medical condition or wishful thinking about their ability to work.
The data confirmed some assumptions about the differing treatment of employees within certain job classifications. For example, laborers were least likely to be accommodated or granted flex-time, whereas professionals were most likely to be given these opportunities.
Job lock, or at least the perception of job lock, was shown to be pervasive. The degree of perceived job lock by the respondents correlated closely with the size of the employer and consequently with the likelihood that the employer was offering health insurance benefits.
Somewhat surprisingly, small employers were more likely than larger employers to offer flex-time, perhaps because of a "family-type" atmosphere. The rate of discharge after a cancer diagnosis, however, did not vary with the size of the employer.
The ADA is a comprehensive federal law that seeks to prevent discrimination in employment against individuals with disabilities, including those who have been diagnosed with or are being treated for cancer. This study has shown that individuals with a diagnosis of cancer report widespread changes in their employment opportunities. It clearly suggests the need for additional empiric research on cancer-based discrimination, accommodations to facilitate the employment or continued employment of individuals undergoing treatment for cancer, and educational programs for patients, employers, and the public about the legal rights and continued abilities of people with cancer.
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