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ONCOLOGY. Vol. 13 No. 6
 

Cancer Survivors’ Employment and Insurance Rights: A Primer for Oncologists

By

Wendy L. Hobbie, RN, MSN, CRNP, Children’s Hospital of Philadelphia, and University of Pennsylvania, School of Nursing, Philadelphia, Pennsylvania

| June 1, 1999

Currently, at least 8 million individuals are alive who have survived cancer for 5 or more years.[1] By the year 2000, 1 in 900 individuals between the ages of 16 and 44 years will be survivors of childhood cancer.[2] Given these statistics, the unique concerns and issues of the steadily growing population of cancer survivors must be addressed if these individuals are to reestablish a satisfactory quality of life after they complete treatment.

Three Components of Cure

Jan van Eys describes cure as having at least three components: biological, psychological, and social. Biological cure is defined as prolonged remission, ie, the absence of detectable disease for an indefinite period of time.

Psychological cure is achieved when an individual accepts the cancer as an event in his or her life and does not allow it to interfere with normal development. Processing the unique aspects of this experience is imperative for psychological cure.

Social cure occurs when the person with cancer is accepted in society as if the disease was a relatively irrelevant incident. Securing gainful employment without fear of discrimination and obtaining adequate insurance coverage are essential components of social cure.[3,4] This article by Barbara Hoffman examines the obstacles to achieving a social cure caused by failure to obtain gainful employment.

Unique Issues Facing Pediatric Cancer Survivors

Ms. Hoffman provides an overview of the insurance and employment issues faced by survivors of cancer. She offers practical information for health care providers as they prepare to assist survivors with the complex process of becoming reintegrated into society. As Ms. Hoffman notes, there are state and federal laws and policies that employers and insurance companies are required to follow and resources that are accessible to all cancer survivors. Although these laws and policies pertain to all individuals diagnosed with cancer, issues that survivors of childhood cancer face may differ from those experienced by adult cancer survivors; hence, they may not be covered.

Children with cancer are unique in that the therapies employed to treat them can have a profound effect on their physiologic functioning and neurocognitive ability. These effects of treatment can range from mild to severe.[5]

The impairments that some childhood cancer survivors experience may dramatically affect their ability to become vital participants in society. In particular, the neurocognitive effects can impair the survivor’s ability to achieve age-appropriate developmental milestones. This, in turn, creates a vicious cycle that results in a young adult survivor who cannot obtain full-time employment and is unable to afford insurance, and yet does not meet the criteria for governmental insurance coverage or other public assistance.

In some situations, parents and survivors must choose between the achievement of a developmental milestone, eg, securing employment (even if it is a minimum-wage position) vs the benefits of remaining unemployed so that the survivor will qualify for social services assistance. If they choose the former, this places them at risk of being unable to obtain adequate health care coverage. Without health care coverage, these survivors will be unable to receive the necessary follow-up care that could attenuate the physical, neurocognitive, and psychological effects of cancer treatment.

Summary

Cancer survivors and their families are empowered to combat discrimination when they become aware of the laws regarding discrimination, their civil rights, and the resources available to them. Thus, teaching health care providers about the laws and policies available to fight discrimination in the workplace is essential. So, too, is assisting survivors to appreciate their rights regarding insurance coverage.

This article underscores the importance of understanding the difficulties that survivors face after the diagnosis and treatment of cancer. Curing cancer is a hollow victory if survivors cannot achieve or maintain a productive position in society without fear of isolation and discrimination.

 

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Barbara Hoffman, JD


1. Ries LAG, Kosary CL, Hankey BF, et al (eds): Surveillance, Epidemiology and End Results (SEER) Cancer Statistics Review. NCI, NIH Pub No. 97-2789, Bethesda, Maryland, 1997.

2. Bleyer WA: The impact of childhood cancer on the United States and the world. Cancer J Clin 40(6):3555-367, 1990.

3. van Eys J: The truly cured child. Pediatrician 18:90-95, 1991.

4. van Eys J: Living beyond cure: Transcending survival. Am J Ped Hematol Oncol 9(1):114-118, 1987.

5. Schwartz CL, Hobbie WL, Constine LS, et al: Survivors of Childhood Cancer: Assessment and Management. Philadelphia, Mosby, pp 81-110, 1994.


 
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