The population of adults who have survived childhood cancer is growing at a rapid rate. It is estimated that 325,000 young adults in the United States are survivors of childhood cancer. 2 Thousands of survivors are staying well, growing up, graduating from high school or college, and successfully entering the workforce. Survivors of childhood cancers are educators, sports figures, radio announcers, nurses, doctors, social workers, dancers, lawyers, receptionists, computer programmers, and workers of all types.
Work fulfills many needs for adults, including financial security, health insurance, and self-worth. Despite the high numbers of survivors, some still face job discrimination. Cancer survivors’ right to work is better protected than ever before by federal and state laws that protect employment rights. However, a cancer history can still create barriers to finding, keeping, or changing jobs.
Careful preparation for job applications and interviews can help you avoid job discrimination. Make an honest assessment of your skills and job history when deciding what job to apply for. A job counselor can help you prepare your résumé and practice interviewing skills. Apply only for jobs you are able to do, as employers have the right to reject you if you are not qualified for the job. If you have a choice, work for a company with a large workforce, as it is less likely to discriminate, and it will be easier to get life and health insurance.
I didn’t mention my cancer history in my interview. But, of course, I had to during the physical after they offered me the job. I was petrified I’d lose the job, but I didn’t. They didn’t say anything about my cancer history and I got the good health insurance with the job. All that worry for naught. In a smaller company, I might not have been that fortunate, because one ill employee can skew the whole plan.
Unless you have specific mental or physical limitations that affect your ability to do the type of work you are applying for, your cancer history should have no bearing on your qualifications for the job. An employer who is covered by anti-discrimination laws such as the Americans with Disabilities Act (ADA) cannot refuse to hire you simply because you are a cancer survivor. Some employers are covered by neither federal nor state laws and therefore could discriminate against someone because of her cancer history. Knowing your rights and preparing strategies for your job interview can make the difference between being hired and being rejected. The following are some suggestions from the National Coalition for Cancer Survivorship about how to conduct yourself during a job interview.
Do not volunteer information about your cancer history. Employers have the right only to determine if you are capable of performing the job. They do not have the right to ask about personal or confidential information during an interview.
Under the ADA, employers cannot ask about medical history, require you to take a medical exam, or ask for medical records unless they have made a job offer.
Do not lie on a job application or during an interview. You can be fired later if your dishonesty is uncovered. Instead, answer only the specific questions asked. Try to steer the conversation toward your current ability to do the job, rather than explaining your past.
Do not ask about health insurance until you have been offered a job. Before accepting the job, get the benefits information and review it thoroughly.
If your medical history becomes an issue after the job offer, get a letter from your physician that briefly outlines your treatment and stresses your current good health and ability to do the job. Ask the doctor to let you review the letter prior to giving it to your potential employer. Some survivors who write well prepare these letters themselves and give them to their doctors for a signature.
Even if you have no disabilities, the ADA and many state laws protect you if you are treated differently because of your cancer history. Courts look to your individual circumstances to determine whether you are covered under the applicable federal or state law.
You can go to the website of the U.S. Equal Employment Opportunity Commission (EEOC) at www.eeoc.gov , and look at its technical assistance documents about Pre-Employment Disability-Related Questions and Medical Examinations. It also has a document about the definition of disability used in federal civil rights (anti-discrimination) laws.
Both federal contractors and federal aid recipients (e.g., hospitals and universities) are required to provide reasonable accommodations to people with disabilities, including most individuals with a cancer history. When you are seeking a job at one of these employers, you can inquire about their affirmative action program.
I’ve never had a problem during job interviews. I list my experience as a camp counselor for kids with cancer, so they ask about my history and I tell the truth.
I’ve had some problems getting jobs due to my cancer history. I applied for several jobs in the aircraft industry for which I was well qualified. They were enthusiastic until they did a complete medical, then they didn’t hire me. It’s a form of discrimination. But I didn’t want to fight over it so I got another job. After that, I just didn’t put it down on the application. If I was directly asked if I had ever had cancer, I said, “Yes, but I was only 9 months old.”
Job discrimination can spell economic catastrophe for cancer survivors because most health insurance is obtained from employment. Under federal law and many state laws, an employer who is covered by the relevant law cannot treat a survivor differently from other employees because of a history of cancer except in certain circumstances involving health, life, and disability insurance. A guide to U.S. disability rights laws can be found at www.ada.gov/cguide.htm .
Discrimination can take many forms, often appearing in subtle remarks or practices rather than the anticipated overt forms that most often come to mind when we think of the issue. In my case, I found myself in a seemingly “safe” situation—a supervisor with an M.D., no need to mention my history, etc. Yet things began to change after I revealed my history of cancer during a brief illness related to my post-splenectomy status. Since then, I have frequently been called at home or transferred to her line upon calling in sick for close questioning about my symptoms, conversations with my hematologist, tests run or not run, medications, and other personal matters which I feel extremely uncomfortable discussing with someone whom I consider a business colleague.
Despite fantastic performance evaluations and award nominations, since a longer absence for a more severe infection a few months ago and decreased willingness to answer her questions, I have been increasingly criticized, often for seemingly irrelevant matters. Because of the increasingly hostile environment, I’m currently seeking other employment.
I would highly recommend to other survivors that they document everything—details of interview processes, comments about performance, exact hours worked, etc., as the documentation I’ve had has helped me in this nightmarish situation. In my next job, I don’t plan to reveal my history unless absolutely forced to do so, and then I plan to back the discussion with some solid positive evidence on how irrelevant it is to my work.
The ADA prohibits many types of job discrimination by employers, employment agencies, state and local governments, and labor unions. In addition, most states have laws that prohibit discrimination based on disabilities, although what these laws cover varies widely.
The ADA prohibits discrimination based on actual disability, perceived disability, or history of a disability. Any employer with 15 or more workers is covered by the ADA.
The ADA requires that:
Employers not make medical inquiries of an applicant, unless one of the following situations applies:
Applicant has a visible disability, such as amputation.
Applicant has voluntarily disclosed his cancer history.
Such questions be limited to asking the applicant to describe or demonstrate how he would perform essential job functions. Medical inquiries are allowed after a job offer has been made, or during a pre-employment medical exam.
Employers provide “reasonable accommodations,” unless it causes undue hardship. An accommodation is a change in duties or work hours to help employees during or after cancer treatment. An employer does not have to make these changes if they would be very costly, disruptive, or unsafe.
Employers not discriminate because of family illness. For instance, if an employee has a child who has cancer, the employer cannot treat the employee differently because she thinks the employee will miss work or file expensive health insurance claims.
If employers offer healthcare, they must do so fairly to all employees. However, employers are not required to provide health insurance.
The EEOC enforces Title 1 (employment) of the ADA. Call (800) 669-4000 for enforcement information and (800) 669-3362 for enforcement publications. Other sections are enforced by, or have their enforcement coordinated by, the U.S. Department of Justice (Civil Rights Division, Public Access Section). The Department of Justice’s ADA website is www.ada.gov .
When my son was in a wheelchair, it really opened my eyes about disability issues because there was no park in our large city that was accessible to him. He couldn’t go into the sports arena for baseball or football games, and we had to really check out class field trips to make sure that an elevator was available. Now I look at every building that I enter with new eyes. But things are really improving. Now hearing-impaired people can use headsets in the movie theaters. They have started adaptive swimming lessons and are planning T-ball and other programs for disabled kids.
In Canada, the Canadian Human Rights Act provides essentially the same rights as the ADA. The act is administered by the Canadian Human Rights Commission. You can get more information by calling the national office at (613) 995-1151.
I am going to have surgery soon, and expect to be off work for 8 weeks. My business has no provision for medical leave of absence, but I have disability insurance through the Canadian government. So I don’t have to quit, just go on medical disability. My boss is very understanding, so I won’t have any problems.
If you feel you have been discriminated against due to your disability or a relative’s disability, contact the EEOC or the Canadian Human Rights Commission promptly. In the United States, a charge of discrimination generally must be filed within 180 days of when you learned of the discriminatory act. Although you do not need an attorney to file a complaint, an attorney experienced in job discrimination can help you draft the complaint to make it more likely to be successful.
Despite two episodes of discrimination, I have gone through life sort of blithely telling people about my history because it is so much a part of who I am. Since I was diagnosed at 21, being a survivor marks who I am as an adult. I can’t separate out the person I am now from the life events that have shaped me. And battling and surviving Hodgkin’s disease was in many ways a major influencing factor in my adult life. So for better or worse, I don’t hide the fact from people, and overall I would say most have been very accepting and kind, and a few have gone out of their way to help me, finding me (much to my amazement) courageous and strong. Only a few have stood in my way, fearful of my history and past.
The federal Rehabilitation Act bans public employers and private employers that receive public funds from discriminating on the basis of disability. The following employees are not covered by the ADA, but are by the Rehabilitation Act:
Employees of the executive branch of the federal government (Section 501 of the Rehabilitation Act)
Employees of employers who receive federal financial assistance and have fewer than 15 workers (Section 504 of the Rehabilitation Act)
If you are a federal employee (Section 501), you must file a claim within 30 days of the job action against you. If you are an employee whose employer has a federal contract (Section 503), you must file a complaint within 180 days with your local office of the U.S. Department of Labor, Office of Federal Contract Compliance Programs. If your employer receives federal funds (Section 504), you have up to 180 days to file a complaint with the federal agency that provided funds to your employer, or you can file a lawsuit in a federal court. The federal Rehabilitation Act is enforced by the Civil Rights Division of the Department of Justice, (202) 514-4609. See www.justice.gov/crt/contact for more information about how to contact the Civil Rights Division of the Department of Justice.
When I applied to graduate school, I was rejected. This was 7 years post-treatment, and I was too dumb to protest. Two years later, the same graduate program did admit me.
I hate this sort of stuff. It is all too common and most often quite hidden so we never get the full story. I only know about the grad school because a friend was on the admissions committee. She told me that they wouldn’t give one of their precious spots to someone they thought might die. Otherwise I would never have known.
The Family and Medical Leave Act (FMLA) protects the job security of workers in large companies who must take a leave of absence to care for a seriously ill child, take medical leave when the employee is unable to work because of his or her own medical condition, or for the birth or placement of a child for adoption or foster care. An employee must have worked 25 hours per week for 1 year to be covered. Some states offer paid family leave. The FMLA:
Applies to employers with 50+ employees within a 75-mile radius.
Provides 12 weeks of unpaid leave during any 12-month period to care for seriously ill self, spouse, child, or parent. In certain instances, the employee may take intermittent leave, such as reducing her normal work hours.
Requires employers to continue to provide benefits, including health insurance, during the leave period.
Requires employees to make reasonable efforts to schedule leave so it will not disrupt the workplace.
Requires employers to return employee to the same or equivalent position upon return from the leave. Some benefits, such as seniority, need not accrue during periods of unpaid FMLA leave.
Requires employees to give 30-day notice of the need to take FMLA leave when the need is foreseeable.
FMLA is enforced by complaints to the Employment Standards Administration, Wage and Hour Division, U.S. Department of Labor, or by private lawsuit. The nearest office of the Wage and Hour Division may be located by looking in the U.S. Government pages of your telephone directory or through an online search. You have up to 2 years to file an FMLA complaint or a lawsuit.
The District of Columbia and almost all states have laws banning discrimination against people with disabilities. The type of protection varies from state to state. For information about your state laws, contact the state agency that enforces employment rights, the local bar association, the National Coalition for Cancer Survivorship, or your state chapter of the American Cancer Society. To file a complaint under state law, contact your state division on civil rights or human rights, or call the EEOC Public Information System at (800) 669-4000. The EEOC website has information about filing a charge at www.eeoc.gov/employees/charge.cfm .
For more detailed information about laws governing insurance and jobs, read A Cancer Survivor’s Almanac (2004 edition), edited by Barbara Hoffman, J.D., or contact the National Coalition for Cancer Survivorship listed in Appendix B .
Survivors are often reluctant to change jobs because they fear that they may lose insurance for themselves and their families. A cancer history requires lifelong medical surveillance that may be impossible to finance without insurance. Survivors often stay in unsatisfying jobs that offer health insurance because they can’t risk losing health insurance if they quit and take a better job. This is sometimes called “job lock.” Parents of young survivors also face the same dilemma. There will be a bigger safety net under the Patient Protection and Affordable Care Act as its provisions take effect (if upheld in the courts) over the next several years so that survivors will not need to be without insurance. Still, staying in a job with better coverage may continue to be a real issue.
I wanted to leave my job for a better paying job as a church secretary (as if that isn’t slap enough, a church paying better than a university), and I was told by an independent insurance company that no way would they provide health insurance for Elizabeth, a 5-year survivor of Wilms tumor. Never mind that the doctors say that she is just fine, nothing to worry about, pick out her college—the insurance company says they aren’t touching her with a 10-foot pole. I guess I will take the lower pay and stay at the university where I know Elizabeth is covered no matter what.
• • • • •
Rachel’s neuroblastoma was treated with a bone marrow transplant. When my husband recently transferred to a different university to teach, we were assured that there was no pre-existing condition clause. Since Rachel requires growth hormone, it was essential to have the $6,000 a year cost covered by insurance. We got a call from the pharmacist saying that the new insurance refused to pay. It turns out that a month after our new coverage started, the university elected to use a new prescription insurance coverage, which didn’t cover growth hormone. So we are appealing it, but we wouldn’t have taken the new job if we’d known. And we are down to one vial.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)