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
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.
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
- 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
- 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
- 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
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
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
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
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
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
- 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
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
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)
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
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
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
- 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
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
- 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
- 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
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
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
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.
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
- 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
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
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
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
- 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.