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measure provider and individual knowledge, attitudes, and beliefs, as well as other potential barriers to access to care.
While access problems persist throughout cancer care, overcoming barriers to screening and early detection is a priority because after primary prevention, the greatest improvements in outcomes will be realized by identifying cancers early, when treatments are most effective. Moreover, initial planning is extremely important for many types of cancer, because failure on the first treatment severely limits subsequent treatment options due to the nature of cancer progression. Evidence suggests that much of the disparity in mortality by race could be reduced by improving access to primary care and cancer screening.
A number of public and private programs have enhanced access to care. The Centers for Disease Control and Prevention's National Breast and Cervical Cancer Early Detection Program provides screening for women unable to afford care. A few states have launched special programs to pay for cancer care for the poor and uninsured (e.g., the Maryland program for women with breast cancer). Many pharmaceutical companies have patient assistance programs to help defray the costs of expensive chemotherapy drugs. These programs and services cannot substitute for adequate insurance coverage for cancer treatment, but they can ease the financial burden for those eligible to receive them.
Although having health insurance coverage improves access, it does not guarantee good care. Several factors other than insurance status and cost can prevent people from "getting to the door" of a health care provider. These include fear of a diagnosis of cancer, distrust of health care providers, language, geography, and difficulties in getting through appointment systems. Incomplete understanding of cancer risk or certain beliefs, such as the belief that one is not at risk or that nothing can be done to change one's fate, may also prevent people from seeking care. Once "in the door," other barriers to access may surface when attempting to navigate the system: for example, getting from a primary care provider to a specialist. Within the system, providers may have difficulty communicating with patients or have insufficient staff to coordinate care and provide all the services patients need. The cancer care system is complex, and different barriers may impede access to care at different phases.
Individuals who have low educational attainment or are members of certain racial or ethnic minority groups face higher barriers to receiving cancer care and tend to have less favorable outcomes than other groups.* Limited access to primary care and cancer screening contributes to having cancer diagnosed at latter stages when prognosis is worse. Differences in treatment by race have been well documented; however, it appears that the effect may actually be more closely related to social class than to race.
Those of advanced age also appear to be vulnerable in the cancer care system. Older people are less likely than younger people to receive effective cancer treatments, despite evidence that the elderly can tolerate and benefit from them. Some undertreatment is explained by provider attitudes toward treating the elderly, who are perceived as less willing or able to tolerate aggressive treatment. Some undertreatment may also be due to patient preferences and unwillingness to experience the side effects of certain treatments.
Research in this area sponsored by the National Institutes of Health is addressed in the 1999 IOM report, The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic' Minorities and the Medically Underserved (IOM, 1999).