Notes from the insurance underground: how the chronically ill cope

This report from the field is an account of the experience of individuals with multiple sclerosis (MS) in Indiana in getting and keeping private health insurance. The report presents the findings of a telephone survey of individuals with MS in Indiana. While survey respondents were generally able to obtain health insurance through the Medicare program or employer-based private health insurance plans, many experienced formidable barriers to adequate and affordable health insurance, such as preexisting exclusions, cancellations, high premiums, and coinsurance. Respondents adopted a variety of strategies to keep private health insurance, including selectivity in submitting claims, which worked to reduce their health insurance coverage. Our findings raise two crucial questions: (1) to what extent are the chronically ill forced to take extraordinary measures to get and keep health insurance? and (2) to what extent do insurer practices in pricing insurance and determining coverage of benefits actually make health insurance even more inadequate and unaffordable for the chronically ill? These two questions are critical in understanding the full dimensions of the health insurance crisis in the United States today.