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Survey Finds Gaps in Some Types of Insurance Coverage Among People with MS

August 25, 2021

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In a survey of more than 2,500 people with MS, nearly all had health insurance, but fewer had other types of coverage such as short-term disability, long-term care, or life insurance. Of those who qualified for Social Security Disability Insurance, only about half were receiving it. These results highlight the importance of becoming informed about coverage options, which can save families from financial losses. This research was partly funded by the National MS Society. The Society provides resources on insurance and financial issues to help individuals with MS navigate this process.
  • Access to affordable, high-quality healthcare is essential for people with MS to live their best lives, and health insurance coverage is essential for people to get the care and treatments they need. This study was undertaken to understand what types of health and other insurance coverage people with MS have, and to identify potential gaps.
  • A team at Cleveland Clinic and collaborators developed and executed an online survey and administered it to 2,507 people with MS, aged 18 to 65, with the help of the North American Research Committee on Multiple Sclerosis (NARCOMS), iConquerMS, and the Society. Questions covered demographic information, MS disease activity, insurance type, and when coverage was obtained relative to MS diagnosis.
  • Most respondents were female (82.9%), white (91.2%), and married (69.5%). Only about 4% were Black and about 4% were Hispanic/Latinx. Nearly 47% were not employed or had retired due to disability, and only 32% were employed full time. Most had had MS for 16 years or more (52.1%), and received care from private neurologists (55.4%). Although the study population lacked diversity, the results highlight gaps and opportunities for preventing financial losses for all of those living with MS.
  • Most respondents had health insurance (96.3%), with 75.3% through private sources (mainly employers) and 38.6% through public sources (most often Medicare); these numbers total more than 100% because people may have insurance through both public and private sources. Most respondents (65.0%) obtained their current health insurance policy after their MS diagnosis.
  • Fewer respondents had other types of coverage, with only 18% having short-term disability  and only about 10% having long-term care insurance. Those who did not have these types of insurance were more likely to have progressive disease, to report being in poor health, and to be underemployed or unemployed.
  • Most respondents (74.3%) met the requirements to be eligible for Social Security Disability Insurance, but of these, only about half were receiving those benefits.
This study highlights the importance of becoming informed about coverage options, particularly after an MS diagnosis. The National MS Society provides comprehensive information about insurance and financial information, including the following: If you have questions, MS Navigators can help you to navigate the complexities of insurance and access to coverage. Within MS Navigators, there is a team of benefits and employment specialists who have in-depth knowledge of these topics.
"Assessing Access to Five Types of Insurance by People with Multiple Sclerosis Using a Cross-sectional Online Survey" by Deborah M. Miller, PhD, Carol C. Musil, PhD (Cleveland Clinic) and colleagues is published in the International Journal of MS Care (published online August 18, 2021). Anyone can read this paper without a subscription.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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