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Journal of Clinical Oncology, Vol 23, No 36 (December 20), 2005: pp. 9187-9197 © 2005 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.01.7418
Health Insurance Coverage in Survivors of Childhood Cancer: The Childhood Cancer Survivor StudyFrom the Massachusetts General Hospital/Harvard Medical School; Dana-Farber Cancer Institute/Harvard School of Public Health, Boston, MA; Fred Hutchinson Cancer Research Center, Seattle, WA; University of California-San Francisco, San Francisco, CA; Department of Pediatrics, University of Minnesota, Minneapolis, MN Address reprint requests to Elyse R. Park, PhD, Massachusetts General Hospital/Harvard Medical School, 50 Staniford St, 9th floor, Boston, MA 02114; e-mail: epark{at}partners.org
PURPOSE: To examine the prevalence and predictors of health insurance coverage and the difficulties obtaining coverage in a large cohort of childhood cancer survivors. PATIENTS AND METHODS: This study included 12,358 5-year survivors of childhood cancer and 3,553 sibling controls participating in the Childhood Cancer Survivor Study. Data were collected by surveys distributed in 1994 (baseline) and 2000 (follow-up). RESULTS: At baseline, 83.9% of adult survivors, compared with 88.3% of siblings, had health insurance coverage (P < .01); 6 years later, small but significant survivor-sibling differences remained (88% v 91%; P < .01). Twenty-nine percent of survivors reported having had difficulties obtaining coverage, compared with only 3% of siblings (P < .01). In multivariate analysis of survivors 18 years of age or older, factors associated with being uninsured included younger age at diagnosis (diagnosis age of 0 to 4 years; odds ratio [OR] = 1.7; 95% CI, 1.3 to 2.2), male sex (OR = 1.3; 95% CI, 1.2 to 1.5), age at baseline survey (age 22 to 24 years; OR = 1.6; 95% CI, 1.2 to 2.1), lower level of attained education (less than high school, OR = 2.6, 95% CI, 2.1 to 3.3; high school graduate, OR = 2.1, 95% CI, 1.8 to 2.5), income less than $20,000 (OR = 5.6, 95% CI, 4.5 to 7.1), marital status (widowed/divorced/separated; OR = 1.3; 95% CI, 1.1 to 1.6), smoking status (current smoker, OR = 2.0, 95% CI, 1.7 to 2.3; former smoker, OR = 1.4, 95% CI, 1.2 to 1.8), and treatment that included cranial radiation (OR = 1.3, 95% CI, 1.0 to 1.6). CONCLUSION: Compared with siblings, adult survivors of childhood cancer had significantly lower rates of health insurance coverage and more difficulties obtaining coverage. Since lack of coverage likely has serious health and financial implications for this at-risk population, any disparity in availability and quality of coverage is of great concern.
Adult survivors of childhood cancer are increasing in number due to successes in cancer therapy in recent decades. The overall 5-year survival rate for patients diagnosed with cancer before age 20 years is now 78%; 10-year survival is at 70%.1 Because these individuals are at risk of long-term complications of therapy, including second primary cancers,2-5 they need close medical surveillance throughout life.6 Thus, health insurance is an important issue for childhood cancer survivors. Unfortunately, the literature suggests that they have difficulties in both acquiring and keeping health insurance.7-14 Earlier reports have found that 5% to 21% of survivors are uninsured and that 2% to 25% of survivors have been denied health insurance,7-9,12 and a number of studies have demonstrated survivor-sibling differences in coverage.9,14 Most existing studies date from the late 1980s and early 1990s and do not reflect recent changes in legislation (such as the Americans with Disabilities Act [ADA] of 1990) and in the structure of health care reimbursement. Two more recent single-institution studies of leukemia survivors found that 14% to 25% were uninsured, suggesting that insurability has changed little in this population. Unfortunately, the small sample sizes of published studies have resulted in limited power to explore predictive relationships. The Childhood Cancer Survivor Study (CCSS), a multisite retrospective cohort study, provided an opportunity to examine the prevalence of health insurance coverage and difficulties obtaining coverage within a large cohort of childhood cancer survivors and their siblings, who served as controls. The objectives of the current study are to: (1) compare the prevalence of health insurance coverage and difficulties in obtaining insurance among childhood cancer survivors and siblings; (2) compare quality and sources of coverage for survivors and siblings; (3) assess survivors' cancer history, sociodemographic factors, and smoking status as predictors of coverage and difficulties obtaining coverage; and (4) assess changes over time in health insurance coverage status and in sources of coverage.
Study Population CCSS is a multi-institutional study of individuals diagnosed between 1970 and 1986, before age 21 years, with leukemia, CNS malignancies, Hodgkin's disease, non-Hodgkin's lymphoma, kidney tumor, neuroblastoma, soft tissue sarcoma, or bone cancer who survived at least 5 years. Details of subject recruitment and data collection procedures have been reported elsewhere.15,16 In brief, eligible survivors were identified through medical records and clinic lists at 26 centers in the United States and Canada. Eligible subjects were contacted by their treating center and mailed an age-specific baseline survey to be completed by those who were 18 years or older at enrollment and by parents of those younger than 18 years. The baseline survey was distributed from 1994 to 1998. Of 20,602 eligible 5-year survivors, 3,035 were lost to follow-up, 3,197 did not participate, and 14,370 (81%) completed a baseline survey. A random sample of participating survivors (n = 4,782) was selected and asked to contact their sibling closest in age to inform them about the study and ask them to participate. Of these, 3,846 sibling controls (80%) completed a baseline survey, 33 were lost to follow-up, and 609 chose not to participate. After excluding Canadian residents (who have government-provided universal health care) and the deceased, baseline survey data included 12,358 survivors (86%) and 3,553 sibling controls (92%) who responded to the questions regarding health insurance coverage. A follow-up survey was distributed to all living participants from 2000 to 2002. Three insurance questions from the baseline were again asked. At the time of this analysis, follow-up data from 10,324 survivors and 2,518 siblings were available; longitudinal analysis included data from 9,593 survivors and 2,329 sibling controls who were not Canadian and who responded to whether or not they had health insurance coverage.
Measures
Analyses
A high proportion of survivors and siblings reported having health insurance. Among those younger than 18 years at baseline, 93.3% of survivors and 94.2% of siblings reported having coverage, while 83.9% of survivors and 88.3% of siblings 18 years and older had insurance.
Cancer-Related Characteristics Associated With Insurance Coverage Status Among Survivors
Among survivors 18 years and older at baseline, original diagnosis of leukemia or non-Hodgkin's lymphoma, younger age at diagnosis of the original cancer, exposure to chemotherapy, or radiation therapy involving the head or chest were associated with a significantly lower likelihood of being insured. Survivors older than 18 years whose original cancer had recurred or who developed a second neoplasm were significantly more likely to have insurance than those who had not experienced these events.
Sociodemographic Characteristics Associated With Insurance Coverage Status Among Survivors and Siblings
Difficulties Obtaining Insurance Coverage Figure 1 illustrates striking differences between survivors and siblings in reported difficulties obtaining health insurance. Overall, 29% of survivors and 3% of siblings reported difficulties in obtaining coverage; significant differences are evident across age groups. Both survivors and siblings who were uninsured were more likely to report difficulties obtaining coverage compared with those who were insured (P < .01; data not shown).
Quality of Insurance Coverage for Survivors and Siblings Survivors in both age groups were significantly more likely than siblings to report exclusions/restrictions on their policies. Of survivors under age 18, 4.9% reported exclusions, and 16.1% did not know if their policies contained exclusions, compared with 0.7% and 3.6%, respectively, of siblings (P < .01). Similarly, 4.4% of adult survivors reported exclusions, and 22.5% did not know, compared with 1.0% and 8.0%, respectively, of siblings (P < .01). Among survivors, 2% reported extra premium charges because of their health history, compared with 0.2% of siblings (P < .001).
Sources of Insurance Coverage Among Survivors and Siblings
Predictors of Survivors Being Uninsured or Having Difficulties Obtaining Insurance Among survivors younger than 18 years, factors associated with an increased likelihood of being uninsured (Table 4) included annual household income under $60,000 and, somewhat surprisingly, lack of recurrence of the original cancer. Factors associated with an increased likelihood of these individuals reporting difficulties obtaining insurance included recurrence of their original cancer, diagnosis of a subsequent premalignant or benign tumor, white non-Hispanic race, and annual household income less than $40,000.
Among survivors older than 18 years, numerous factors predicted being uninsured (Table 5). Survivors who had been diagnosed with cancer earlier than age 15 years, male survivors, those with educational attainment less than college, those not married, those who had ever smoked, individuals with annual household incomes less than $60,000, those who did not develop a second malignancy or had a cancer recurrence, and those who received cranial radiation as part of their therapy, were significantly less likely to have health insurance coverage. CNS tumor survivors were significantly more likely to be insured than leukemia survivors (reference group). Factors significantly predictive of reported difficulties obtaining insurance included age greater than 15 years at original diagnosis, diagnosis of leukemia, occurrence of a second malignancy, and recurrence of original cancer. Individuals aged 18 to 21 years at baseline, males, college graduates, and those who reported annual household incomes greater than $60,000 were significantly less likely to report difficulties.
Multivariate Comparison of Uninsured Adult Survivors and Siblings Employed male survivors were 1.3 times more likely to be uninsured compared with employed male siblings (Table 6). Unemployed females were 2.8 times more likely to be uninsured compared with unemployed siblings. Among married individuals, employed males and unemployed females were significantly less likely to be insured than their sibling counterparts (Table 6).
Follow-Up Survey Data from the follow-up survey were used to determine changes in insurance coverage over time. At follow-up, the percentages of survivors (88%) and siblings (91%) who had health insurance coverage increased slightly but remained significantly different (P < .001). More survivors (19.2%) than siblings (10.2%) did not know if their plan contained any exclusions (P < .001; data not shown). Sources of coverage at follow-up showed similar patterns to those at baseline for all age groups. Compared with siblings, the proportion of survivors who reported being covered through employment or a parent's or spouse's policy was significantly smaller while the proportion who reported being covered through Medicaid or public assistance was significantly greater.
The CCSS is the largest and most extensively characterized cohort established to date for the study of late effects of childhood cancer and treatment. The majority of individuals in this cohort have now reached adulthood, making it is possible to investigate issues, like insurance coverage, important to adults. In the United States, access to affordable health care is often contingent on reasonably priced health insurance. Long-term medical problems are well documented for childhood cancer survivors, and lack of insurance coverage may impede appropriate medical surveillance. A previous CCSS report found that survivors were significantly more likely than siblings to report adverse general health (11%) and mental health (17%), limitations on activities (13%), and functional impairments (12%).20 Adverse long-term health outcomes were common, with 44% of survivors reporting impairments in at least one of these areas. Impaired health status was most prevalent among females, those with lower educational attainment, and those with low household incomes. These factors have also been associated with having difficulties in obtaining health insurance coverage. Multivariate analyses demonstrated that lack of insurance was an independent predictor of adverse outcomes in the areas of general health, mental health, and pain. Other CCSS analyses have found lack of coverage to be associated with lower incidence of ongoing medical care including any general medical contact, general physical examination, or cancer-related medical visits,21 decreased utilization of dental services,22 and lower rates of cancer screening including clinical breast exam and pap test.23 In 1990, the ADA was passed, prohibiting employment and insurance discrimination against individuals with disabilities. Prior its enactment, evidence indicated that childhood cancer survivors experienced discrimination in both these areas.24 It could be expected that rates of health insurance coverage among survivors would be higher after enactment of the ADA than before, and that disparities in insurance coverage between survivors and their siblings would be low. While CCSS data cannot be used to address the potential impact of the ADA since it does not span the pre- and post-1990 time period, our findings do document that a sizable proportion of survivors lack insurance, and that many continue to experience difficulties obtaining coverage. In previous studies, health insurance coverage among survivors ranged from 75% to 95%. Our findings that adult survivors and siblings differed significantly with respect to health care coverage and to difficulties obtaining health insurance were similar to those of previous studies.9,14,25 At follow-up, 88% of survivors, compared with 91% of siblings, were insured—a significant, if small, difference. Any deficit in coverage is not optimal in light of these survivors' ongoing needs for surveillance. Employment status can be closely related to health insurance coverage. A recent study of CCSS pediatric lower extremity bone tumor survivors demonstrated that, compared with siblings, amputees had significant deficits in employment.11 Other recent studies among survivors found employment status differences related to specific types of treatment13 and to specific cancer diagnoses.29 Employment discrimination has been reported by survivors.26 A study conducted in the 1960s and early 1970s found that 45% of adult survivors of childhood cancer had been denied employment because of their cancer history.27 Studies conducted in the 1980s reported employment-related discrimination (as measured by, eg, entry into the uniformed services),8,12,28 and survivor-sibling employment differences have been seen.9 We sought not only to determine the extent to which survivors were insured but also to characterize their coverage with respect to source(s) and limitations, compared with coverage obtained by their siblings. Jacobson Vann et al25 in the early 1990s explored health insurance coverage of 182 childhood cancer survivors and 101 siblings. They found that fewer survivors had employer-provided health insurance, and more were covered by their parents' plans, with survivors being more likely to be denied insurance and to have policies that excluded care for pre-existing medical conditions. Our study found that significantly fewer survivors than siblings were covered through their work or through a parent or spouse. We also found that, at both baseline and follow-up, significantly more survivors than siblings were insured through Medicaid or public assistance programs. To our knowledge, no previous studies have examined the issues of insurance policy restrictions or extra premiums charged to childhood cancer survivors, and no recent studies have examined exclusions for pre-existing conditions. In the CCSS cohort, we found that survivors were more likely than siblings to have such exclusions/restrictions and extra charges associated with their coverage. Of concern, many adult survivors did not know if their policy contained any exclusions/restrictions or charges. The information used in this analysis was obtained as part of a more extensive data collection process. Thus, items regarding insurance did not include a level of detail sufficient to address some issues. Participants were not asked whether they tried to obtain insurance coverage or when. We lack detailed employment data, which would have helped clarify our findings since some participants might work in small companies where insurance benefits are not offered, or they might be self-employed. Data were not available regarding characteristics of group policies that survivors and siblings may participate in, which could aid in assessing quality of coverage. In summary, we found significant differences between childhood cancer survivors and their siblings with respect to health insurance coverage status and coverage sources and identified factors associated with health insurance deficits among survivors. The picture that emerged of the "high-risk" individual is complex: cancer-related, sociodemographic, and health behavior factors all seem to impact insurance issues. The fact that many survivors did not know if their policies included extra charges/exclusions because of their health history demonstrates a need and an opportunity to increase survivors' knowledge about their insurance coverage. Health insurance is an important component in receiving timely access to medical care. Gaps in coverage, particularly among children, can have a substantial negative impact on access to care and to prescription medications.30 Health care providers, formulators of public policy, and survivors themselves will all benefit from an increased understanding of the ways in which health insurance-related issues affect childhood cancer survivors. Future research directions should include elucidating the types of coverage exclusions survivors commonly experience, determining the extent to which survivors' employment choices are limited because of insurance-related concerns, and exploring strategies for decreasing barriers to full coverage among this vulnerable and expanding population.
The Appendix is included in the full-text version of this article, available online at www.jco.org. It is not included in the PDF (via Adobe® Acrobat Reader®) version. CCSS Institutions and Investigators University of California-San Francisco, CA—Arthur Ablin, MD* University of Alabama, Birmingham, AL—Roger Berkow, MD*
International Epidemiology Institute, Rockville, MD—John Boice, ScD
University of Washington, Seattle, WA—Norman Breslow, PhD
UT-Southwestern Medical Center at Dallas, TX—Kevin Oeffinger, MD*
Dana-Farber Cancer Institute, Boston, MA—Lisa Diller, MD*, Holcombe Grier, MD Texas Children's Center, Houston, TX—Zoann Dreyer, MD*
Children's Hospital and Medical Center, Seattle, WA—Debra Friedman, MD, MPH*, Thomas Pendergrass, MD
Roswell Park Cancer Institute, Buffalo, NY—Daniel M. Green, MD* Hospital for Sick Children, Toronto, ON—Mark Greenberg, MB, ChB*
St. Louis Children's Hospital, MO—Robert Hayashi, MD*, Teresa Vietti, MD
St. Jude Children's Research Hospital, Memphis, TN—Melissa Hudson, MD* University of Michigan, Ann Arbor, MI—Raymond Hutchinson, MD*
Stanford University School of Medicine, Stanford, CA—Neyssa Marina, MD*, Michael P. Link, MD Emory University, Atlanta, GA—Lillian Meacham, MD*
Children's Hospital of Philadelphia, PA—Anna Meadows, MD*
Children's Hospital, Oklahoma City, OK—John Mulvihill, MD
Children's Hospital, Denver, CO—Brian Greffe*, Lorrie Odom, MD Children's Health Care-Minneapolis, MN—Maura O'Leary, MD*
Columbus Children's Hospital, OH—Amanda Termuhlen, MD*, Frederick Ruymann, MD
Children's National Medical Center, Washington, DC—Gregory Reaman, MD*, Roger Packer, MD
Children's Hospital of Pittsburgh, PA—A. Kim Ritchey, MD*, Julie Blatt, MD
University of Minnesota, Minneapolis, MN—Leslie L. Robison, PhD*
Cincinnati Children's Hospital Medical Center, Cincinnati, OH—Stella Davies, MD, PhD Children's Hospital Los Angeles, CA—Kathy Ruccione, RN, MPH*
Memorial Sloan-Kettering Cancer Center, New York, NY—Charles Sklar, MD*
National Cancer Institute, Bethesda, MD—Barry Anderson, MD
Mayo Clinic, Rochester, MN—W. Anthony Smithson, MD*, Gerald Gilchrist, MD
The University of Texas M.D. Anderson Cancer Center, Houston, TX—Louise Strong, MD*
Riley Hospital for Children, Indianapolis, IN—Terry A. Vik, MD*, Robert Weetman, MD
Fred Hutchinson Cancer Research Center, Seattle, WA—Wendy Leisenring, ScD*
University of California-Los Angeles, Los Angeles, CA—Lonnie Zeltzer, MD*
University of Alberta, Edmonton, Alberta, Canada—Yutaka Yasui, PhD *Institutional Principal Investigator
The authors indicated no potential conflicts of interest.
Supported by Grant U24 CA55727 from the National Cancer Institute, Bethesda, MD, and support provided to the University of Minnesota from the Children's Cancer Research Fund, Minneapolis, MN. Other investigators and institutions participating in the Childhood Cancer Survivors Study are listed in the Appendix (available online only). Authors' disclosures of potential conflicts of interest are found at the end of this article.
1. Ries LAG, Eisner MP, Kosary CL, et al (eds): SEER Cancer Statistics Review, 1975-2000. National Cancer Institute, Bethesda, MD. http://seer.cancer.gov/csr/1975_2000 2. Li FP, Mulvihill JJ: Preventive pediatric oncology: The childhood origins of adult cancer, in Pizzo PA, Poplack DG (eds): Principles and Practices of Pediatric Oncology. Philadelphia, PA, J.B. Lippincott Company, 1989, pp 1075-1080 3. Meadows AT: Curing cancer in children: Minimizing price, maximizing value. J Clin Oncol 13:1837-1839, 1995 4. Neglia JP, Friedman DL, Yasui Y, et al: Second malignant neoplasms in five-year survivors of childhood cancer: Childhood cancer survivor study. J Natl Cancer Inst 93:618-629, 2001 5. Robison LL, Bhatia S: Late-effects among survivors of leukaemia and lymphoma during childhood and adolescence. Br J Haematol 122:345-359, 2003[CrossRef][Medline] 6. 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Koocher F, O'Malley J: The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. New York, NY, McGraw-Hill, 1981 27. Feldman FL: Work and cancer health histories: Work expectations and experiences of youth with cancer histories (ages 13-23). Oakland, CA, California Division, American Cancer Society, 1980 28. Hays DM: Adult Survivors of Childhood Cancer: Employment and insurance issues in different age groups. Cancer 71:3306-3309, 1993[CrossRef][Medline] 29. Pastore G, Mosso ML, Magnani C, et al: Physical impairment and social life goals among adult long-term survivors of childhood cancer: A population-based study from the childhood cancer registry of Piedmont, Italy. Tumori 87:372-378, 2001[Medline] 30. Olson JM, Suk-fong ST, Newacheck PW: Children in the United States with discontinuous health insurance coverage. N Engl J Med 353:382-391, 2005 Submitted March 10, 2005; accepted September 22, 2005.
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
2 test, or Fisher's exact test when 
18 years). Of those younger than 18 years, the proportion insured differed according to cancer diagnosis. Survivors younger than 18 years whose original cancer had recurred were significantly more likely to be insured compared with those who had not had a recurrence; those who had received chemotherapy including an anthracycline were less likely to be insured than those who were not treated with anthracyclines. 
