Review: Racial Disparities Impact Black, Hispanic MS Patients in US
Black and Hispanic/Latinx people with multiple sclerosis (MS) in the U.S. tend to have more severe disease, but less access to specialty care, greater diagnostic delays, and poorer outcomes, a review found.
Moreover, Blacks are at higher risk than whites of both developing MS and dying from it.
These inequities are directly linked to systemic racism in the U.S., and specifically to social determinants of health, dubbed SDOH, according to the findings of a review led by researchers at the University of Southern California.
The impact of racial disparities on MS was the focus of their recent paper, published in JAMA Neurology, titled “Health Disparities, Inequities, and Social Determinants of Health in Multiple Sclerosis and Related Disorders in the US.”
“For Blacks and Latinos with MS or other autoimmune diseases, access to neurological specialists is rare and diagnostic tools are limited,” Lilyana Amezcua, MD, an associate professor of clinical neurology at USC’s Keck School of Medicine and a study co-author, said in a press release.
“Our study shows that, before we look at biological factors as the cause of the disparities we see in health outcomes, we should first assess the role of SDOH and how we might modify them to make a difference,” Amezcua said.
Amezcua and the team, from the U.S. and Mexico, conducted a review of the scientific literature on racial and ethnic disparities in MS and other autoimmune diseases that affect the nervous system, like neuromyelitis optica spectrum disorder (NMOSD).
The scientists were especially interested in how these social determinants of health — which broadly refer to non-biological, societal phenomena that impact health — are associated with race/ethnicity in MS. Specifically, SDOH includes factors such as where people live, their access to education or healthcare services, and economic stability or lack thereof.
A notable finding of the review was that, generally, there was little published literature for the researchers to analyze. In fact, the team limited their review to Black and Hispanic/Latinx individuals, because there was so little data on other racial/ethnic minority groups, such as Asian Americans.
“Normally, one would expect there to have been much more data available for a survey like this, but racial and ethnic populations, particularly with regard to MS, are quite underrepresented,” Amezcua said.
“In prior studies, only about one percent of literature reflects these minority populations. In clinical trials, less than 10 percent include African Americans or Latinos,” Amezcua added.
This paucity of data highlights a need for the scientific and medical communities to actively engage with people in communities that have historically been underrepresented in research and impacted by racial disparities, the investigators said.
Despite the low number of Black MS patients in research, available data indicate that MS is more common in Blacks than whites, while Hispanic/Latinx individuals are less likely than whites to develop MS. The data also indicate that MS tends to be more severe in minority patients, with higher rates of disability and death compared with white patients.
Substantial differences in SDOH may account for these differences, according to the researchers. For example, Black and Hispanic/Latinx patients tended to have less access to specialty healthcare. Diagnostic delays also were common among minority patients — likely, in part, because they have less access to the kind of specialty care that would be needed to make a diagnosis, according to the researchers.
Since starting treatment early tends to lead to better outcomes, that delay in diagnosis may be one of the reasons that minority patients tend to have more severe disease, the researchers said. Simply put, without an early diagnosis, it’s impossible to start treatment early.
These findings highlight that social factors — and not biological ones, like genetic variations common in different ethnic groups — are likely the major drivers of racial and ethnic disparities in MS, the team concluded.
Working to combat these inequities “includes efforts to increase representation of [minority] populations in clinical research and the training of health care professionals in assessing SDOH in clinical care,” the researchers wrote.
“Addressing disadvantaged populations requires we engage communities and health care leaders in designing system-level health care interventions and culturally appropriate programs,” they wrote.
As examples, the team noted that many hospitals and healthcare facilities are incorporating systems to record patients’ SDOH — for example, asking about access to food, ability to pay for basic needs, and any concerns about violence when taking patient histories.
“It is our responsibility to prioritize care of the socially disadvantaged because without attention to these modifiable disparities and health care inequities, outcomes in vulnerable populations will continue to suffer,” the team concluded.
More needs to be done, however, to combat racism and also increase the representation of minorities in clinical trials, according to Lourdes Baezconde-Garbanati, associate dean for community initiatives at the Keck School of Medicine and a study co-author.
“Going forward, we as researchers need to do a better job of including SDOH in our research models, not only to consider how they affect disease in underrepresented populations, but also to create interventions that go beyond one disease,” Baezconde-Garbanati said.