Insurance Awareness and Usage in the Narcoms Registry

Background: Individuals living with MS face uncertainty in many aspects of their lives including the myriad of financial concerns that is associated with this chronic disease. As access to personal insurance, including health, disability income, long-term care, and life insurance, is largely employer-based or purchased out of pocket from earnings, unemployment among people with MS can lead to significant distress regarding their health, financial security, and future. Inability to afford insurance leaves the burden of care to family and other informal caregivers.

Objectives: To describe the awareness and usage of health and additional non-health insurance types in the NARCOMS registry.

Methods: Online respondents to NARCOMS the Fall 2015 Update survey as of November 20, 2015, that answered if they had (Yes/No) health insurance (HI), and were aware (Yes/No) of short-term disability (STD), long-term disability (LTD), long-term care (LTC), and life insurance (LI).

Results: Of the 4929 participants who completed the Fall 2015 survey, 4792 (97.2%) provided some insurance information: 76.4% female, mean(SD) age of 56.2 (10.9) years, 61.8% currently married, and 90.5% Caucasian. Nearly all participants reporting having HI (99.2%), 88.5% for the entire prior 6 months, 63.1% with Private insurance, and 12.8% with supplemental insurance. The majority (94.1%) have heard of at least one of the types of additional insurance, with 86.6% having heard of STD, 92.1% LTD, 87.0% LTC, and 97.0% LI. Of those that have heard of the other insurance types, 15.8% currently have STD, 32.1% LTD, 11.4% LTC, and 60.9% LI; with 9.1% planning on getting STD, 20.4% LTD, 11.4% LTC, and 31.8% LI. 76.7% of all respondents have applied for LI and 20.1% of those have been denied; 48.2% applied for LTD, 21.6% have been denied; 41.4% applied for STD, 15.6% denied; 30.1% applied LTC, 49.8% denied. Of all respondents, 13.5% have

Conclusions: The majority of respondents have health insurance and are aware of additional types of insurance. While many have life insurance, only a small percentage currently have an additional type of insurance that would provide assistance in a short- or long-term situation due to disability. The Fall 2015 Update will continue data collection through December 2015.