Patient Perspectives on Insurance Changes and Therapy Decisions in Narcoms

Background: Making treatment decisions for MS involves several factors, including insurance coverage and financial situation. Important changes to insurance coverage in the last few years may have required some patients to change their disease modifying therapies (DMTs) for financial rather than clinical reasons.

Objectives: To describe the insurance status of NARCOMS participants and how insurance and financial situation affects DMT choices.  

Methods: The NARCOMS Fall 2014 Update survey included questions about health insurance and DMT choices related to insurance: current health insurance (Yes/No), health insurance for the prior 6 months (Yes/No), comparison of current health insurance to 12 months prior (better, worse, unchanged), and how insurance/financial situation has influenced treatment of MS. Results shown represent only those registry participants who completed the survey online (data entry for paper forms is still ongoing).

Results: Of the 5,106 participants who completed the update online, 4507 (96.9%) completed the health insurance questions, 78.8% were female with mean (SD) age of 56.7 (9.6) years and 62.1% had RRMS. Nearly all (99.5%) participants had health insurance.  98.6% had insurance for the prior 6 months, with 68.6% reporting insurance coverage had not changed in the prior year, while 23.0% reported worse coverage compared to 12 months ago. Coverage did not differ by gender or MS type, but more females reported their insurance coverage to be worse compared to 12 months ago (23.9 vs 19.7%, p=0.013). More respondents with progressive MS reported no change in coverage compared to RRMS (73.3 vs 66.8%, p=0.0003). When asked about influence of insurance or financial situation on DMT choice 30.0% reported not taking DMT by choice or physician recommendation, 15.9% took their DMT of choice with full coverage, 46.6% with a co-pay, 19.1% with free/discounted drug program, 3.6% were able to switch DMTs with insurance approval, 1.3% would like to switch but could not due to lack of insurance approval/coverage, while 2.4% had to stop/change/skip DMTs due to higher co-pays, and 1.6% did not take DMTs because they did not have insurance or insurance denied the DMT.

Conclusions: Most participants did not perceive major impacts to their insurance or financial situation with regards to DMT choice. However, many rely on assistance for DMT coverage or are not able to take a DMT as directed or at all due to their current insurance or financial situation.