OBJECTIVE To examine the health insurance experience and out-of-pocket health care costs of families with a child with IDDM.

RESEARCH DESIGN AND METHODS A case-control study of 197 families with a child with IDDM and 142 control families with no diabetic children was conducted. IDDM-affected families were identified from the Allegheny County IDDM Registry. Brothers and sisters of the parents in the IDDM-affected families were asked to participate as control subjects. Health insurance coverage and the money that families spent on health care services and supplies not reimbursed by insurance (out-of-pocket costs) were assessed by questionnaire.

RESULTS No difference was found between the IDDM-affected and control families in the percentages with or without insurance. Families with low household incomes ($10,000–$19,999) were at the greatest risk for having no insurance. While coverage provided by private plans was similar between the IDDM-affected and control families, many families had no reimbursement for insulin (10%), syringes (10%), or blood testing strips (30%). Out-of-pocket expenses were 56% higher in the IDDM-affected families than in the control families. Seventeen percent of the IDDM-affected families had expenses over 10% of their household income. This particularly affected families with low household incomes. Pre-existing illness clauses and insurance denial affected only a small proportion of the case families.

CONCLUSIONS These data illustrate that most families with a child with IDDM have health insurance, yet still incur larger out-of-pocket health care costs than do families without the presence of diabetes. IDDM-affected families likely face a number of economic decisions regarding health insurance and the use of health care.