MS Patients in US Can Lack Key Insurance Coverage, Survey Warns

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Most people with multiple sclerosis (MS) in the U.S. have health insurance, but many lack important other types of insurance, such as life insurance, short-term disability insurance, and long-term care insurance, according to an online survey of patients.

Its findings suggest that MS patients who are likely to be more vulnerable to gaps in coverage — namely, those with progressive disease, as well as those who are not employed, or generally in poor health — are particularly likely to lack these insurance types.

“These results will help inform health care providers about the importance of these types of insurance and highlight the need for patient advocates and wellness organizations to target educational interventions about these insurance types,” the researchers wrote.

Results were in the study “Assessing Access to Five Types of Insurance by People with Multiple Sclerosis Using a Cross-sectional Online Survey,” published in the International Journal of MS CareThis research was partly funded by the National MS Society.

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Most people are aware of the need for health insurance, but there are other types of insurance that are also important may be less well-known. These typically cover areas that health insurance doesn’t, like long-term personal care.

In the U.S., most people access health and other types of insurance through employment, the study noted, so that losing a job can put a person at risk of becoming uninsured. This is especially a concern for a disabling disease like MS, where the disease itself may make “gainful employment” difficult or impossible. Having a chronic and disabling condition such as MS can also make it difficult to get new insurance.

Federal programs like Social Security Disability Insurance (SSDI), which provides coverage to disabled individuals who have worked and payed Social Security taxes, may help to close gaps in coverage. However, not all are aware of these programs or taking full advantage of them, and those who are “may not be aware of waiting periods or limitations on benefits,” the researchers wrote.

For these reasons, it is important to understand how people with MS are insured, and to identify gaps in coverage that might put people at risk.

A team led by scientists at Cleveland Clinic conducted an online survey among MS patients in the U.S. to better understand their insurance status.

In total, 2,507 people responded to the survey. Respondents’ mean age was 53.5 years; most were female (82.9%), white (91.2%), married (69.5%), had relapsing-remitting MS (66.6%), and a disease duration of at least 16 years (52.1%). Nearly half were not employed or retired due to disability (46.5%), while about a third were employed full-time (32%). Most respondents described themselves as being in good health (42.0%).

Nearly all (96.3%) had health insurance: 38.6% were insured through public sources, and 75.3% through private sources (some individuals had both public and private). About two-thirds of the respondents (65%) had obtained their current health insurance after being diagnosed with MS.

Because so few respondents did not have health insurance, the researchers were unable to perform analyses to look for factors associated with a higher likelihood of being uninsured.

Over half (58.5%) of the respondents also had life insurance. Most had purchased life insurance privately (62.7%); nonetheless, statistical analyses showed that individuals who were employed or married were significantly more likely to have life insurance. Life insurance was also more common among younger respondents and non-Hispanics.

Compared to health and life insurances, far fewer respondents had short-term disability insurance (18.1%). This type of insurance, meant to protect against income loss over a specified time period, was especially uncommon among people with progressive types of MS.

“Those who lacked short-term disability income were in worse overall health, and with more aggressive disease, suggesting the importance of having protections from short- and long-term absences from work,” the researchers wrote. “This poses a potential hazard to individuals with MS because there is a mandatory 5-month wait period before SSDI eligibility begins.”

For those who did have short-term disability insurance, the vast majority got it through an employer (94.5%). Consistently, statistical analyses showed that people who are employed were significantly more likely to have short-term disability insurance. Married individuals were also more likely to have this insurance type, regardless of employment status.

The least common type of insurance was long-term care insurance, held by 9.7% of respondents. Statistical analyses showed that this insurance type — which covers care costs generally not covered by other insurance — was most common among people who were employed, age 60 or older, and who reported themselves to be in good overall health.

Notably, about three-quarters (74.3%) of the respondents met the criteria to be eligible for SSDI. Of these patients, however, less than half (49.5%) were receiving those benefits.

Broadly, the researchers concluded that MS patients who lacked short-term disability and long-term care insurance “were more likely to have progressive disease and to report being in fair to poor health and not employed full time.

“As a result, individuals who could be considered to be at the greatest risk for intermittent lost wages in early adulthood and are most likely to need subsequent personal care assistance are at the greatest risk for not having coverage,” the researchers wrote.

Healthcare providers “can direct patients to nonprofit agencies that provide education about insurance and emphasize that others with MS have obtained these insurance types after their diagnosis,” they added.

The National MS Society provides useful information about insurance.

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