Serious Illness and Private Health Coverage: A Unique Problem Calling for Unique Solutions

See, for example, Weissman J. Epstein A. , Falling Through the Safety Net: Insurance and Status and Access to Care (Baltimore: Johns Hopkins University Press, 1994); Kinney E. Steinmetz S. , “Notes from the Insurance Underground: How the Chronically Ill Cope,” Journal of Health Politics, Policy and Law, 19 (1994): 633–42; Beauregard K. , Agency for Health Care Policy and Research, Persons Denied Private Health Insurance Due to Poor Health. National Medical Expenditure Survey Data Summary 4 (Rockville: Department of Health and Human Services, 1991); and Brown L. , “The Medically Uninsured: Problems, Policies, and Politics,” Journal of Health Politics, Policy and Law, 15 (1990): 413–26.

Winterbottom C. Liska W. Obermaier M. , State-Level Databook on Health Care Access and Financing (Washington, D.C.: Urban Institute Press, 2nd ed., 1995): At 12.

See id. at 18.

Short P. Lair T. , “Health Insurance and Health Status: Implications for Financing Health Care Reform,” Inquiry, 31 (1994–95): 425–37. See also Franks P. , “Health Insurance and Subjective Health Status: Data from the 1987 National Medical Expenditure Survey,” American Journal of Public Health, 83 (1993): 1295–99.

Blumberg L. Liska D. , The Uninsured in the United States: A Status Report (Washington, D.C.: Urban Institute Press, 1996); Bovbjerg R. Griffin C. Carroll C. , “U.S. Health Care Coverage and Costs: Historical Development and Choices for the 1990's,” Journal of Law, Medicine & Ethics, 21 (1993): 141–62; Light D. , “Life, Death, and the Insurance Companies,” N. Engl. J. Med., 330 (1994): 498–500; Light D. , “The Practice and Ethics of Risk-Rated Health Insurance,” JAMA, 267 (1992): 2503–08; and Zellers W. McLaughlin C. Frick K. , “Small-Business Health Insurance: Only the Healthy Need Apply,” Health Affairs, 11, no. 1 (1992): 174–80.

Employee Retirement Income Security Act of 1974, Pub. L. No. 93-406, 88 Stat. 829 (codified as amended at 29 U.S.C. §§ 1101-461). See Jensen G. Gabel J. , “The Erosion of Purchased Health Insurance,” Inquiry, 25 (1988): 328–43.

Alpha Center, “1996 State Legislative Sessions: Insurance Market Restructuring Leads State Agendas,” State Initiatives in Health Care Reform, 16, Mar./Apr. (1996): 1–4; and General Accounting Office, Health Insurance Regulation: Variation in Recent State Small Employer Insurance Reforms (Washington, D.C.: U.S. Government Printing Office, 1995).

Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat. 1936 (to be codified at 42 U.S.C. § 210).

Consolidated Budget Reconciliation Act of 1985, Pub. L. No. 99-272, 100 Stat. 82 (codified as amended at 29 U.S.C. § 162).

Communicating for Agriculture, Comprehensive Health Insurance for High Risk Individual: A State-by-State Analysis (Bloomington: Communicating for Agriculture, 9th ed., 1995).

Pub. L. No. 104-191, § 341, 110 Stat. 1936, 2070 (1996).

Kaiser Family Foundation, The Medicare Program: Information Sheet (Washington, D.C.: Kaiser Family Foundation, June 1995): At 2.

Rowland D. , “Special Report: A Profile of the Uninsured in America,” Health Affairs, 13, no. 2 (1994): 283–87.

Short P. Banthin J. , “New Estimates of the Underinsured Younger than 65 Years,” JAMA, 274 (1995): 1302–06.

See Winterbottom Liska Obermaier , supra note 2, at 1305.

Bovbjerg R. Kollar C. , “State Health Insurance Pools: Current Performance, Future Prospects,” Inquiry, 23 (1986): 111–21.

Ginsburg P. Fasciano N. , The Community Snapshots Project: Capturing Health System Change (Washington, D.C.: Center for Studying Health System Change, 1996).

This sample was drawn from a stratified random sample of households in St. Joseph County, Indiana (the greater South Bend Metropolitan Area), obtained for another study conducted by the Indiana State Department of Health (DOH). See Murphy M. , Final Report: Consumer Survey of Chronic Disease Prevention Project, St. Joseph County, Indiana (Nov. 1993). Two methods were used to obtain the DOH study sample: (1) a county-wide, random-digit dialing of households, and (2) a house-to-house survey of households in thirteen census tracts with high proportions of minorities and low-income people. Each nonelderly adult resident (age 19 to 64) in the DOH study was asked to join our study. Of the 1,225 random contacts, 329 were too old (age 65+) for our study. Of the remaining 896 individuals, 508 (56.7 percent) agreed to participate. DOH interviewers forwarded the names, addresses, and telephone numbers to the authors. We conducted a subsequent telephone survey to collect data. We attempted to contact all consenting DOH study contacts. Not all consenting contacts could be reached again. Many had moved, changed telephone numbers, or were otherwise unreachable after multiple attempts. After many follow-up calls, 242 respondents participated successfully in our study.

To measure morbidity, we identified twenty-three separate categories of serious conditions that could affect all major organ systems. (These included heart disease, diseases of the nervous system, lung diseases, diseases of the glandular system, kidney diseases, liver diseases, intestinal diseases, skeletal diseases, muscle diseases, diseases of the immune system, drug or alcohol addiction, serious mental illness, treatment for high cholesterol, and cancer.) Respondents were asked to self-report whether they had any of these conditions. For analysis, data were grouped into the following categories: (1) no conditions, (2) one or two morbid conditions, and (3) more than two morbid conditions. In the South Bend Sample, respondents with one or more morbid conditions were placed in the Seriously Ill Subsample. All respondents in the Breast Cancer Sample had at least one morbid condition—cancer.

The Breast Cancer Sample was drawn from the tumor registries of the seven hospitals that treat over 90 percent of the women with breast cancer in Marion County, Indiana, the greater Indianapolis Metropolitan Area. The Breast Cancer Sample is comprised of women with breast cancer who: (1) resided in Marion County; (2) had been diagnosed or treated in the study hospitals; (3) were diagnosed and/or treated for Breast Cancer between January 1987 and December 1990; and (4) were between nineteen and sixty-four years of age at the time of the survey. Because of confidentiality concerns, the tumor registries contacted patients and forwarded names of willing study participants to the investigators. Tumor registries contacted 821 patients whom the hospitals recorded as having breast cancer in the relevant time period. Many letters requesting participation in the study were returned to the hospitals as undeliverable. Many other contacted respondents did not meet the study's age or residency criteria or, in a few cases, did not even have breast cancer. Because of the unreliable way in which hospitals handled returned mail for this study, inaccuracies in the demographic data in the tumor registries, and hospitals' confidentiality concerns regarding nonparticipating patients, we could not conduct an analysis of the nonrespondents. Of the 208 women who agreed to participate in the study, 34 (16.5 percent) had died, moved, were too ill, or were otherwise unreachable for a telephone interview. In all, there were 174 women in the Breast Cancer Sample.

Cooper P. Monheit A. , “Does Employment-Related Health Insurance Inhibit Job Mobility,” Inquiry, 30 (1993): 400–16.

Blumberg Liska , supra note 5; and Rowland , supra note 13.

Institute for Health and Aging, Chronic Care in America: A 21st Century Challenge (San Francisco: University of California, Aug. 1996).

Goyder J. , The Silent Majority: Nonrespondents on Sample Surveys (Boulder: Westview Press, 1987); and Graven R. , “An Overview of Nonresponse Issues in Telephone Survey,” in Groves R. , eds., Telephone Survey Methodology (New York: John Wiley, 1988).

Frey J. , Survey Research by Telephone (Newbury Park: Sage, 2nd ed., 1989).

Specifically, a more “active interview” was used for the two questions about experiences with health insurance and reasons for not having coverage. See Hollstein J. Gabrium J. , The Active Interview (Thousand Oaks: Sage, 1995).

We analyzed whether respondents were insured with a dichotomous dependent variable (uninsured [0] or insured [1]) using logistic regression. The independent variables used in all regression analyses included: Age, gender, race, marital status, educational status, employment status, annual household income, number of dependents, comorbidity, and reported health status. Whether respondents delayed seeking or taking treatment (delayed care [1] or not delay care [0]) was analyzed in the same way, except with the additional independent variable of insurance coverage status.

We defined family income as “low income” (<$25,000), “moderate income” (between $25,000 and $50,000), and “high income” (>$50,000).

Reported by the bipartisan congressional commission (Pepper Commission) on comprehensive health care. See S. Rep. No. 101-113 (1990).

The results of the regression are available from the authors.

The results of the regression are available from the authors.

See, for example, Blumberg Liska , supra note 5; Monheit A. , “Underinsured Americans: A Review,” Annual Review of Public Health, 15 (1994): 461–85; Rowland , supra note 13; Beauregard , supra note 1; and S. Rep. No. 101-113.

See, for example, Short Banthin , supra note 14; Bashshur R. Smith D. Stiles R. , “Defining Underinsurance: A Conceptual Framework for Policy and Empirical Analysis,” Medical Care Review, 50 (1993): 200–18; Bodenheimer T. , “Underinsurance in America,” N. Engl. J. Med., 327 (1992): 274–78; S. Rep. No. 101-113; and Farley P. , “The Underinsured: Who are They?,” Milbank Quarterly, 63 (1985): 476–504.

Specifically, 39.4 percent of the insured Seriously Ill Subsample and 31.9 percent of the insured Breast Cancer Sample were underinsured for this reason.

The results of the regression are available from the authors.

See, for example, Blumberg Liska , supra note 5; Weissman Epstein , supra note 1; Ayanian J. , “The Relationship Between Health Insurance Coverage and Clinical Outcomes Among Women with Breast Cancer,” N. Engl. J. Med., 329 (1993): 326–31; Franks P. Clancy C. Gold M. , “Health Insurance and Mortality: Evidence from a National Cohort,” JAMA, 270 (1993): 737–41; and Office of Technology Assessment, Does Health Insurance Make a Difference? — Background Paper (Washington, D.C.: U.S. Government Printing Office, 1992).

See supra note 19.

See sources cited supra note 5.

See sources cited supra note 36.

See Bovbjerg R. , “Reform of Financing for Health Coverage: What Can Reinsurance Accomplish?,” Inquiry, 29 (1992): 158–75; and Pauly M. , “Risk Variation and Fallback Insurers in Universal Coverage Plans,” Inquiry, 29 (1992): 137–47.

See Blumberg Liska , supra note 5; Schroeder S. , The Medically Uninsured—Will They Always Be “With Us?,” N. Engl. J. Med., 334 (1995): 1130–33; and Bovbjerg Griffin Carroll , supra note 5.

See Bovbjerg Griffin Carroll , supra note 5 (citing Department of Commerce, Statistical Abstract of the United States (Washington, D.C.: U.S. Government Printing Office, 1990): At 8, tbl. 2).

See Short P. Monheit A. Beauregard K. , Uninsured Americans: A 1987 Profile (Washington, D.C.: National Center for Health Services Research and Health Care Technology Assessment, 1988): At 1.

See Blumberg Liska , supra note 5, at 2.

See id.; and Schroeder , supra note 41.

See Blumberg Liska , supra note 5, at 2.

Schwartz W. , “In the Pipeline: A Wave of Valuable Medical Technology,” Health Affairs, 13, no. 3 (1994): 70–79.

Freudenheim M. , “Health Care Costs Edging Up and a Bigger Surge is Feared,” New York Times, Jan. 21, 1997, at A1.

Fama T. Fox P. White L. , “Do HMOs Care for the Chronically Ill?,” Health Affairs, 14, no. 1 (1995): 234–43.