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Childhood Cancer Survivors


It is estimated that in the year 2000, 1 in every 900 young adults will be a cancer survivor.


An employer cannot refuse to hire you simply because you are a cancer survivor.


Do not volunteer information about your cancer history.


Do not ask about health insurance until you have been offered a job.


Discrimination can take many forms, often appearing in subtle remarks or practices....


[D]ocument everything--details of interview processes, comments about performance, exact hours worked, etc....


Despite two episodes of discrimination I have gone through life sort of blithely telling people about my history....


In August 1993, the Family and Medical Leave Act (FMLA) became federal law.


The District of Columbia and almost all states have laws banning discrimination against people with disabilities.


[Y]ou can contact the Childhood Cancer Ombudsman Program for help


Survivors often stay in unsatisfying jobs that offer health insurance because they can't risk losing health insurance if they quit....


The laws and regulations relating to admission to the armed services are permissive, not mandatory.

Jobs


The following excerpt is taken from Chapter 4 of Childhood Cancer Survivors: A Practical Guide to Your Future by Nancy Keene, Wendy Hobbie & Kathy Ruccione, copyright 2000 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

The population of adults who have survived childhood cancer is growing at a rapid rate. It is estimated that in the year 2000, 1 in every 900 young adults will be a cancer survivor. Thousands of survivors are staying well, growing up, graduating from high school or college, and successfully entering the workforce. Survivors of childhood leukemia are educators, sports figures, radio announcers, doctors, social workers, dancers, lawyers, receptionists, and workers of all types.

Work fulfills many needs for adults: financial security, health insurance, self-worth. Despite their numbers, some survivors 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.

Interviews

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. Working with 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, choose to 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 heath 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 the type of work you are applying for, your cancer history should have no bearing on your qualifications for the job. An employer cannot refuse to hire you simply because you are a cancer survivor. 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 on 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 Americans with Disabilities Act, 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 them 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, laws protecting disabled persons apply to most cancer survivors. Courts look to your individual circumstances to determine whether you are covered under the applicable federal or state law.
  • You can go to the web site of the US EEOC at http://www.eeoc.gov/, and look at their technical assistance documents on Pre-Employment Disability-Related Questions and Medical Examinations. They also have a document on the definition of disability used in federal civil rights (anti-discrimination) laws.
  • Both federal contractors and federal aid recipients (hospitals and universities, for example) are required to engage in affirmative employment action for people with disabilities, which would include anyone with a cancer history. When you are seeking a job at one of these employers, you should inquire about their affirmative action program.
I've never had a problem during job interviews. I have 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."

Discrimination

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.

Discrimination can take many forms, often appearing in subtle remarks or practices rather than the anticipated overt forms which 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 MD, 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 postsplenectomy 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.

Americans with Disabilities Act

The Americans with Disabilities Act (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 Americans with Disabilities Act of 1990 prohibits discrimination based on actual disability, perceived disability, or history of a disability. Any employer with fifteen or more workers is covered by the ADA.

The ADA requires that:

  • Employer may not make medical inquiries of an applicant, unless one of the following situations applies:
    • Applicant has a visible disability, e.g., amputation
    • Applicant has voluntarily disclosed his cancer history

  • Such questions must be limited to asking the applicant to describe or demonstrate how she would perform essential job functions. Medical inquiries are allowed after a job offer has been made, or during a pre-employment medical exam.
  • Employer must 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.
  • Employer may 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.
  • Employer is not required to provide health insurance, but if they do give health insurance, they must do so fairly to all employees.

The Equal Employment Opportunities Commission (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 US Department of Justice (Civil Rights Division, Public Access Section). The Justice Department's ADA web site is www.usdoj.gov/crt/ada.html.

I've been blind since I was 2 and am now in my 40s. I've been lucky in that I've never encountered any major obstacles that warrant using the laws. I think they are good laws. But I feel the biggest obstacle is dealing with the public's attitudes.

•  •  •   •  •  

In 1974, I had just finished my masters in library science and I was barely two years post-treatment for Hodgkin's. They were very explicit that I was too ill to work as a librarian because of my cancer history. In those days they actually sent you for a physical exam. I remember the doctor saying I had impaired pulmonary function, and he felt I should be sitting back and resting. It was the first I heard of it.

After a good cry, I got very angry and called the assistant county librarian, who I knew really wanted to hire me (she thought I was a firecracker!) and then the ACLU. A lawyer from the ACLU did call me back, and I cried for an hour or more, and I don't remember much of what he had to say. Then the library called me back and said that the assistant county librarian "had kicked some butt" and I could start work on Monday.

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 further information by calling the national office at (613) 995-1151.

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.

If you feel that 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 US, 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, 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

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 contracts and have fewer than fifteen workers. (Section 503 of the Rehabilitation Act)
  • Employees of employers who receive federal financial assistance and have fewer than fifteen 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 US 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.

When I applied to graduate school in 1979, I was rejected. This was seven 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 admission 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.

Family and Medical Leave Act

In August 1993, the Family and Medical Leave Act (FMLA) became federal law. FMLA protects job security of workers in large companies who must take a leave of absence to care for a seriously ill child, take medical leave because 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 one year to be covered. The Family and Medical Leave Act:

  • Applies to employers with 50+ employees within a 75-mile radius.
  • Provides twelve weeks of unpaid leave during any twelve-month period to care for seriously ill self, spouse, child, or parent. In certain instances, the employee may take intermittent leave, such as reducing his or her normal work hours.
  • Requires employer to continue to provide benefits, including health insurance, during the leave period.
  • Allows leave when a health condition renders employee unable to perform the functions of the position.
  • Requires employee to make reasonable efforts to schedule leave so it will not disrupt the workplace.
  • Requires employer 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 employee 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, US Department of Labor, or by private lawsuit. The nearest office of the Wage and Hour Division may be located by looking in the US Government pages of your telephone directory. You have up to two years to file a 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 on 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 division, or call the EEOC Public Information System at (800) 669-4000.

For more detailed information on laws governing insurance and jobs, read A Cancer Survivor's Almanac, edited by Barbara Hoffman, JD, or contact the National Coalition for Cancer Survivorship listed in the Resource section.

I am going to have surgery soon, and expect to be off work for eight 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 a survivor of cancer or a member of the family feels that he has been denied a job, fired, forced from a job, denied reasonable accommodation, or discriminated against for promotions or medical leave because of cancer history, you can contact the Childhood Cancer Ombudsman Program for help. (See the Resource section.)

Changing jobs

Survivors are often frightened 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 took a better job. This is sometimes called "job lock." Parents of young survivors also face the same dilemma.

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 five-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 ten-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.

Military

Some survivors of childhood cancer wish to enlist in the military, or qualify for ROTC, the reserves, or the service academies. Survivors of childhood cancer are usually denied entrance into the military with the following exceptions:

  • Survivors of Wilms tumor and germ cell tumor of the testis who have been off treatment and disease-free for two years.
  • Hodgkin's disease survivors, treated only by chemotherapy and radiation, who have been off treatment and disease-free for five years.
  • Large-cell lymphoma survivors who are off treatment and disease-free for two years.
  • Acute lymphoblastic leukemia (ALL) survivors with no recurrence. All other leukemias are excluded.

Survivors in the categories listed above are considered on a case-by-case basis.

Applicants will be asked to provide information on their disease, its treatment, and their current health status. The recruiter should also be given the results from a recent medical examination and articles from the latest medical literature. If you are granted a waiver, you must still meet the physical requirements for the position sought. These are outlined in the Department of Defense's Directive No. 6130, March 31, 1986, called "Physical Standards for Enlistment, Appointment, and Induction."

Grace Monaco, JD, wrote in an article in Pediatric Clinics of North America:

The laws and regulations relating to admission to the armed services are permissive, not mandatory. This means that each of the armed services can enforce these laws and regulations if the service wishes to do so. Usually, taken on a case-by-case basis, survivors of childhood cancer who meet the requirements of the particular service and who are "otherwise physically fit for service" are eligible for a medical waiver to serve in the armed forces, reserves, and ROTC, and to obtain admission to service academies if the survivor is free of cancer and, generally, has completed therapy five years previously.1

While the process may seem daunting, it's worth it if you want to enter the military. Waivers are granted for survivors. A female neuroblastoma survivor was granted a waiver and entered the US Naval Academy. The Childhood Cancer Ombudsman Program (see Appendix B) can explain federal regulations and research previous cases to aid the applicant to the military.

My son was diagnosed with neuroblastoma stage IV when he was 3 years old. He has had no recurrence. He wanted to join the Air Force ROTC when he entered college. He impressed the commanding officer of the detachment who recommended him for the one scholarship he personally bestows. My son did the paperwork and had the physical and was rejected solely on his cancer history.

He had excellent qualifications, was driven and self-disciplined, and was extremely goal-oriented. He had his oncologist write a letter stating that he was "cured" of the neuroblastoma. The commanding officer also went to bat for him. The Air Force reversed their decision and gave him the scholarship. He is doing extremely well three years later and plans on becoming a pilot.


Notes:

  1. W. Hobbie et al., "Symptoms of Posttraumatic Stress in Young Adult Survivors of Childhood Cancer," Presentation. (19 Jun 1998). The fifth international conference on long-term complications of treatment of children and adolescents for cancer.

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