These factors and others may come into play in different ways at one or more of the steps along the path from cancer detection and treatment to care at the end of life, and all can potentially contribute to differences in outcomes. In this chapter, the role of financial barriers in the context of cancer care is reviewed, in particular, problems related to health insurance coverage and out-of-pocket costs. Then the literature exploring the sources of the mortality differentials among sociodemographic groups is summarized by the following phases of care (For a more in-depth review of this literature and a conceptual framework regarding issues of access to cancer care, see the NCPB commissioned paper by Mandelblatt and colleagues [Mandelblatt et al., 1998, available on line at: www.nas.edu/cancerbd], upon which this review is based):
Individuals with cancer are very likely to be insured, because the large majority is over age 65 and covered by Medicare. Nevertheless, of the 1.3 million new cases of cancer diagnosed in 1997, an estimated 86,000 individuals, or 7 percent, would be expected to be uninsured (estimate based on age-specific cancer incidence rates and the age distribution of the uninsured). Nationally, 16 percent of the population was uninsured in 1997 (U.S. Bureau of the Census, 1998). In addition, many individuals with health insurance experience lapses in coverage (an estimated 12 million in 1992).
The diagnosis of cancer can, in itself, lead to a loss of health insurance coverage or to higher insurance premiums. In 1992, 7 percent of cancer survivors who were insured prior to their diagnosis reported that their health insurance changed following their cancer diagnosis (e.g., 5 percent said that their insurance costs increased) (Hewitt, 1998). Congress tried to remedy this problem in 1996, enacting the Health Insurance Portability and Accountability Act (Kennedy-Kassebaum Act) to improve the portability and continuity of health insurance coverage in private insurance markets and among employer-sponsored group health plans. The act limits the ability of insurers to deny or discontinue coverage because of preexisting conditions such as cancer. The increased cost of premiums for portable insurance products and difficulties in implementing the law, however, have limited the value of these new protections for consumers (U.S. General Accounting Office, 1997).
If individuals are uninsured, medical expenses related to cancer may force them to "spend down" to become eligible for Medicaid—that is, to deplete their assets until they meet eligibility criteria. Alternatively, individuals who are disabled by cancer for a period of two years may become eligible for Medicaid coverage through the Supplemental Security Income (SSI) program. Some hospitals are obligated to provide some charity care to the uninsured (i.e., under the Hill-