Examining Health Equity Among Different Racial and Ethnic Subpopulations With Multiple Sclerosis

Multiple sclerosis (MS) is a chronic disease that involves demyelination of plaque throughout the white and gray matter of the central nervous system. The early stages of MS are usually marked by a relapsing-remitting course of neurological deficits, which progress toward continuous, permanent dysfunction and disability. (1) Of those with a diagnosis of MS, 74% are women. (2)

Multiple sclerosis also takes a toll on quality of life, as patients often experience an inability to participate in activities of daily living, cognitive impairment, and depression. (3) Approximately 62% of those with MS also have comorbidities, the most common including anxiety, hypertension, migraine, smoking or history of smoking and obesity, according to results from a 2019 study. (4)

In addition to the clinical impact of disability and comorbidities, MS has also been shown to affect patients’ ability to maintain their professional lives, with approximately 50% of patients losing their jobs 5 years after receiving a diagnosis. (5) Unemployment related to MS is higher than that of any other reason for disability, and loss in productivity contributes to up to 44% of MS costs in the United States and Europe. (6) Additionally, employees with MS, when compared to healthy employees, work a higher number of unpaid hours and experience more interpersonal and performance challenges, such as verbal criticism, harassment, declining relationships and poor performance reviews.

The cost burden of MS is also significant. Following congestive heart failure, MS is the second most costly chronic condition, with total all-cause, per-patient direct and indirect health care costs reaching up to $54,244 per year.7 For those who have a severe disability associated with MS, costs can exceed $100,000 per year. (8) The high cost of MS care is also one factor that can lead patients to join Medicare before age 65 years or decrease their financial assets to become eligible for Medicaid for health care coverage. (9)

The clinical and economic burden of disease among patient with MS, while substantial across the broad spectrum of patients, may disproportionally affect patients of color. Black and Hispanic Americans particularly have been found to experience heightened challenges with an MS, with differences ranging from prevalence and disease course to treatment access and outcomes. (10) This article explores common disparities and how they influence the burden of MS in racial and ethnic minority populations.

Differences in Prevalence and Disease Course

The prevalence of MS in the United States varies by race and ethnicity. A retrospective, observational cohort study reviewed more than 1 million patients in a Northern California health care system to quantify MS prevalence. Of these patients, 3,286 had MS. Results demonstrated that among the cohort, the age-adjusted period prevalence of MS was highest among non-Hispanic Black patients, with 521.3 people with MS per 100,000 people. White patients had the second-highest age-adjusted period prevalence (384.6 per 100,000), Hispanic patients had the third highest (183.7 per 100,000) and Asian patients had the lowest (63.9 per 100,000). Regarding gender differences, Black women had the highest age-adjusted period prevalence of all groups (677.0 per 100,000). (11)

In addition to experiencing a higher prevalence of MS, Black individuals often receive a diagnosis at a younger age than do White individuals. (9) They can experience a disproportionately greater number and severity of MS manifestations, such as relapses; poor recovery; visual impairments; and challenges with walking, balancing and coordinating. (12) Their disease typically progresses rapidly, with earlier onset and, ultimately, greater level of disability. (9,12) According to results from a retrospective review of 1,300 patients with MS, Black patients (n = 40) presented with a higher expended disability status scale (EDSS) score at time of diagnosis than did White patients (n = 31 [mean, 2.9 ± 0.2 vs 1.8 ± 0.2; difference between means, 1.1 ± 0.3; P = .0002]). By the 4-to-6-year follow-up, the EDSS score for Black patients (n = 60) grew to nearly double that of White patients (n = 45 [mean, 5.7 ± 1.5 vs 2.9 ± 0.3; difference between means, 2.8 ± 1.7; P = .0008]). With each 1-unit increase of the EDSS score, there was a 1.3 times greater likelihood that the patient was Black rather than White. Black patients also used unilateral assistance devices more often than White patients (hazard ratio [HR], 2.2; 95% confidence interval [CI], 1.5-3.5) as well as the use of wheelchairs (HR, 2.5; 95% CI, 1.3-4.5). (13) Although receiving early successful treatment may help delay the advancement of MS-related disability, (14) the more-aggressive progression of MS experienced by Black patients does not appear to be related to a delayed diagnosis of MS or treatment. (13)

Although MS prevalence is lower for Hispanic patients than Black and White patients, Hispanic patients tend to be younger at the time of diagnosis, particularly if they were born in the United States. (15) Results from a retrospective study showed the percentage of Hispanic patients with relapsing-remitting MS (vs other disease subtypes) was much higher than that of Black or White patients. Both Hispanic and Black patients had a shorter mean disease duration than White patients. The Patient-Derived Multiple Sclerosis Severity Score (P-MSSS), adjusted for age and gender, was significantly higher for Hispanic patients (3.9 ± 2.6) and Black patients (4.5 ± 3.0) than it was for White patients (3.4 ± 2.6; P < .0001 for each comparison). Race remained a significant predictor for P-MSSS when also adjusting for insurance coverage. (16)

Treatment Disparities

Disparities exist across the health care system regarding the treatment of MS among racial and ethnic minority populations. Notably, racial and ethnic minority subpopulations are consistently underrepresented in clinical trials, which makes it difficult to ascertain variations in the efficacy of treatment. According to results from a 2014 PubMed review of nearly 60,000 articles on MS, Black and Hispanic patients are represented in less than 1% of published literature. (10)

Black, Latino and White patients do not receive the same services for MS, according to results from a 2010 retrospective study funded by the National MS Society. The study reviewed data from the registry of the North American Research Committee on Multiple Sclerosis (NARCOMS) Project on Blacks patients with MS (n = 1313), Latino patients with MS (n = 715) and White patients with MS (n = 26,967). Latino patients were less likely to use rehabilitative, supportive, and alternative therapies compared with Black and White patients; 33.8% of Latino patients never received occupational therapy versus 21.1% of Black and 24.1% of White patients. In fact, more Latino patients had never had a home health aide (40%) compared with Black (28%) or White (30%) patients. Black patients were much less likely to receive an evaluation and treatment at an MS clinic than White and Latino patients (36.8% vs 49.2% and 47.0%, respectively). In addition, more Black patients (56.1%) had never received care from a neurologist specializing in MS than Latinos patients (47.2%). (17) Seeing a neurologist is associated with an increased likelihood of a patient using a DMT. (18)

Access Challenges

The barriers to MS care experienced by racial and ethnic populations can be attributed in part to low health literacy, limited education, low income and a lack of insurance coverage. (10) Results from the NARCOM study described earlier demonstrated that 29.3% of Black patients earned less than $15,000 annually, versus 19.5% of Latino patients and 14.3% of White patients. An income between $50,000 to $75,000 annually was earned by 16.0% of Black patients versus 23.2% of Latino and 27.7% of White patients. (17)

Regarding insurance coverage, fewer Black patients with MS had private insurance coverage than Latino and White patients (57.6% vs 65.8% and 72.3%, respectively). Medicaid covered 10.8% of Black patients versus 7.4% of Latino patients versus 3.7% of White patients. (17) A retrospective analysis conducted in 2012 claims data for patients with MS covered by commercial insurance (n = 18,269) and Medicaid insurance (n = 1715) revealed noteworthy health care discrepancies between the 2 groups. Overall, per-patient annual costs for MS care were similar; however, the Medicaid group had up to 5 times higher inpatient and emergency department (ED)–related costs—and a higher number of visits. During 2012, 21.5% of Medicaid patients and 6.7% of commercial patients visited the ED 1 or more times, and 6.9% of Medicaid patients and 1.6% of commercial patients had 1 or more inpatient admissions. (19)

The Medicaid group exhibited higher rates of MS-related complications than did the commercial group, such as gait abnormalities (17.3% vs 10.4%); burning, numbness or tingling (21.9% vs 17.9%); dizziness/vertigo (14.6% vs 9.2%); and urinary incontinence (16.0% vs 5.8%; P < .001 for all). The Medicaid group also had a higher rate with nearly all comorbidities, such as hypertension (35.7% vs 30.2%), diabetes (16.6% vs 9.6%) and asthma (15.9% vs 6.0%; P < .001 for all). (19)

Results from the analysis showed that the Medicaid group experienced lower pharmacy-related costs, which could be attributed to DMT use: 32.5% of Medicaid patients used DMTs versus 52.1% of commercial patients. (19) The authors noted that insufficient care coordination and patient education regarding correct use of DMTs could contribute to the higher rate of hospitalizations and MS-related complications experienced by the Medicaid group. (19)

In addition to a lack of care coordination and patient education regarding DMTs, racial and ethnic minority groups may experience coverage barriers in accessing the DMTs they need for optimal outcomes. Coverage criteria varies by insurance provider; therefore, patients receiving drug coverage from different providers may experience different levels of access and coverage for DMTs.20 High copays and lack of coverage for certain therapies limit treatment options for most patients. (21)

In a consensus paper updated in 2019, the MS Coalition stated that giving patients access to all FDA-approved DMTs was imperative for optimal management of MS. A broad range of therapy options are important for adults with early and active disease — the latter being more likely to be experienced by Black or Hispanic patients. In addition, because Black patients may experience lower efficacy with certain DMTs, therapy options should not be restricted for this population. (14)

Conclusions

Multiple sclerosis can profoundly affect the lives of those who receive the diagnosis, and racial and ethnic minorities appear to experience unique challenges regarding disease characteristics and access to care. Among these groups, the disease course may be more active (14) and the MS manifestations more severe. (12) For Black patients, certain DMTs may be less effective. (22) Sometimes experiencing barriers to care related to health literacy, income or health insurance coverage, (10) these groups may benefit from increased management across the care continuum that ensures access to patient education, financial and other support resources, and treatment tailored to their unique disease course.

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