Objective: To determine the prevalence, expenditures, and utilization of enrollees with MS relative to all enrollees in privately insured, Medicare, and Medicaid populations. Methods: The authors used insurer administrative billing data to identify persons with MS, their insured medical expenditures and utilization, and benchmark general insured population expenditures and utilization. Three samples of insurer billing data were analyzed: nationally representative samples for the privately insured (1994 through 1995) and Medicare (1996 though 1997) populations, and Medicaid data for disabled (1991 through 1996) populations from six states. Results: Using 2 years of diagnoses on claims, the prevalence of MS in the privately insured population was 24 per 10,000, 36 per 10,000 in the Medicare population, and 71 per 10,000 in the Medicaid disabled population. Annual insured expenditures were $7,677 per privately insured enrollee with MS vs $2,394 for all privately insured enrollees, $13,048 per Medicare beneficiary with MS compared with $6,006 for all Medicare beneficiaries, and $7,352 per Medicaid disabled recipient with MS vs $4,088 per disabled recipient without MS. Home health expenditures were very high for Medicare beneficiaries with MS and nursing facility expenditures were very high for Medicaid disabled recipients with MS. A small proportion of enrollees with MS accounted for most expenditures. Conclusions: Insured enrollees with MS are two to three times more expensive than average insured enrollees. If the premiums that employers or governments pay health insurers and the capitation amounts that insurers pay health care providers do not account for these higher costs, a disincentive is created for the enrollment and care of persons with MS.

Comprehensive data on the costs of multiple sclerosis is sparse. We conducted a survey of 606 persons with MS who were members of the National Multiple Sclerosis Society to obtain data on their cost of personal health services, other services, equipment, and earnings. Compensation of such cost in the form of health insurance, income support, and other subsidies was measured. Survey data and data from several secondary sources was used to measure costs incurred by comparable persons without MS. Based on the 1994 data, the annual cost of MS was estimated at over $34,000 per person, translating into a conservative estimate of national annual cost of $6.8 billion, and a total lifetime cost per case of $2.2 million. Major components of cost were earnings loss and informal care. Virtually all persons with MS had health insurance, mostly Medicare/Medicaid. Health insurance covered 51 per cent of costs for services, excluding informal care. On average, compensation for earnings loss was 27 per cent. MS is very costly to the individual, health care system, and society. Much of the cost (57 per cent) is in the form of burdens other than personal health care, including earnings loss, equipment and alternations, and formal and informal care. These costs often are not calculated.