and reduce unnecessary visits or redundant diagnostic tests or if they manage pain and other symptoms better, thereby reducing the use of emergency rooms. Disease management can contribute to greater patient satisfaction if coordination of care and provider communication improve.

Several versions of a patient's Bill of Rights were considered during the 105th Congress, but no federal legislation was passed (Medical Payment Advisory Commission, 1998). A range of protections that are particularly relevant to people with cancer in managed care plans were considered, including guaranteed access to health care specialists, continuity of care if a health provider is dropped in the middle of treatment, reimbursement for care while participating in clinical trials, and access to a meaningful internal and external appeals process for consumers to resolve their differences with their health plans and health care providers.

Self-Funded Health Insurance Plans

Nearly one-half of insured workers in 1995 were employed by organizations that self-fund their health insurance plans (Jensen, 1997). Many states have mandated the coverage of certain health benefits and consumer protections, but self-funded plans are regulated under the federal Employee Retirement Income Security Act of 1974 (ERISA) and are not subject to these mandates. Several state laws affect cancer care (Box 2.4). Rhode Island, Georgia, and Maryland, for example, require insurers to pay for new investigational cancer therapies provided as part of a qualified clinical trial, and at least 17 states prohibit insurers from excluding coverage for the off-label use of prescription drugs to treat cancer (e.g., use of a drug approved by the U.S. Food and Drug Administration [FDA] for one type cancer or other condition to treat another type of cancer for which the drug has not yet been FDA approved) (NCI, 1998b). States can affect the care provided under ERISA plans by mandating what providers licensed in the state must do (e.g., requiring physicians to give patients with breast cancer information about treatment options) (Murphy et al., 1997).

Key Findings

A single national system or program to ensure access to comprehensive, coordinated care for cancer does not exist. This situation is not unique to cancer, and in fact, pluralism, dynamism, and diversity are hallmarks of the U.S. health care industry (President's Advisory Commission, 1998). The ad hoc and fragmented nature of the existing "system," however, is especially problematic for individuals with cancer because of the complex nature of cancer care.

The trajectory of cancer care services—from early detection to treatment, follow-up, and palliative care can span decades, occur in a variety of settings, involve numerous providers from different medical disciplines, and incorporate an ever-changing set of treatment modalities. The course of care through this trajectory varies widely by type of cancer (of which there are more than 100) and stage of disease. In addition to being highly complex, cancer is one of the most expensive conditions to treat, consuming about one out of every twenty health care dollars spent in the United States.

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