Pablo Czerkas, J.L. Mann High School, Greenville, South Carolina, United States
Multiple sclerosis (MS) is an autoimmune illness in which the immune system destroys the myelin sheath, an insulating cover that surrounds nerve fibers. This mechanism helps send nerve signals quickly, but once it begins to break down, a myriad of symptoms can occur, such as numbness and fatigue. Figure 1 emphasizes the different signs and symptoms of MS. If the disease progresses, severe disability and poor cognitive function can occur. There is currently no cure for MS, but there are treatments that can slow down the progression of the disease ("Multiple Sclerosis," 2022).
It is common knowledge within the MS community to think that White populations of Northern descent are more likely to have the disease, but new studies are now pointing to the contrary. According to Okai et al. (2022), African American populations have, in some studies, been linked to having a greater incidence of MS than non-Hispanic White populations, as a retrospective study between 2008 and 2010 found that the incidence rate of African-Americans was 3.3% greater than that of non-Hispanic White populations. On top of that, African Americans were found to have worse clinical outcomes due to faster disease progression and onset. However, if this racial group is more likely to suffer from the symptoms and risks of the disease, why are they so underrepresented in drug trials, medical literature, and research about MS? Healthcare barriers, systematic biases, and racism are all conflicting factors that prevent minorities, especially African Americans, from accurate representation in MS literature.
Figure 1: Signs and Symptoms of MS (“Hegasy Multiple Sclerosis,” 2018).
A PubMed review study in 2014 cross-referenced over 60,000 published articles about MS but found that only 113 focused on African Americans and only 23 focused on Hispanic populations (Khan et al., 2015). This highlights the significant lack of research and knowledge available regarding MS in minority communities. However, new studies have shed light on the unique impact of MS on ethnic populations. For example, the new research underscores the idiosyncratic disease onset of multiple sclerosis, as a study has found that African American populations are more likely to have it when older, while Hispanic Americans are more likely to have it when younger (Khan et al., 2015). Secondly, African Americans, along with Hispanics, are prone to having more disabling symptoms (Okai et al., 2022). This notion is exemplified by a recent study on how the Black and Latino communities suffer far more symptoms at increasing levels (Kister et al., 2021). African and Hispanic Americans had a higher symptom burden in all twelve symptom domains, such as pain, depression, and cognition. Although these studies highlight the significance of how MS affects these groups, particularly African Americans, there is still a lack of representative data that is both high-quality and useful (Okai et al., 2022). Figure 2 highlights several reasons for the barriers African Americans face in participating in and being represented in clinical research, including systematic biases, limited access to resources, and a lack of culturally competent care.
Figure 2: Social Determinants that reflect the inequalities in MS care and outcomes. (Okai et al., 2022). Each cause has an assigned color; for example, “health literacy” is found to be yellow.
The scarcity of data on these more affected groups is concerning, creating an apprehensive atmosphere for those seeking answers as to why they have MS and why they suffer differently than others. Fortunately, there has been a proposal done by the National African Americans with Multiple Sclerosis Registry (NAAMSR) that looks for ways to increase research into the correlation between MS and African Americans (Okai et al., 2022). Figure 3 summarizes the proposal, which includes educating MS-affected African Americans about opportunities to participate in clinical research, increasing investigatory research, and expanding overall knowledge about the correlation of Black Americans with MS.
Figure 3: The NAAMSR proposal model contains the primary objectives, registry design, and primary measures to increase MS research about African American populations (Okai et al., 2022). DMT= disease-modifying therapies; AAwMS=African Americans with Multiple Sclerosis.
Aside from this proposal to increase the availability of beneficial research between MS and minorities, how do doctors effectively treat the condition for these groups? According to a literature review conducted by Michael Roberts et al. (2020), although there is little good-quality research into MS and minorities, there is still some valuable information that is useful. For one, higher-efficacy medications such as alemtuzumab are proven to be very effective in Black populations, but these medications are often inaccessible at the start because Medicaid and insurance companies often do not cover them. As for Asian populations, fingolimod, teriflunomide, and dimethyl fumarate were found to be effective. Regarding Hispanic populations, the study proposes interferons, dimethyl fumarate, and fingolimod. The article also pushes the idea that, although these treatments are beneficial, there may be an increased risk of disability, making it crucial for healthcare providers to counsel patients about the risks and benefits (Roberts et al., 2020).
Although progress has been made to enhance diversity in MS research, current data indicate that poor inclusivity persists, significantly impacting minorities who strive for a more symptom-free life. Despite some studies suggesting that minorities are more susceptible to developing debilitating symptoms, there remains inadequate research investigating the underlying causes of these differences. The dearth of inclusivity in MS research is a grave concern, and urgent action is required to ensure equitable access to effective treatments for all those affected by this disease.