Dr Dalia Rotstein: Physicians Must Be Aware MS Affects People of All Backgrounds

Dalia Rotstein, MD, MPH, assistant professor of medicine at the University of Toronto, chaired a session at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2024 annual meeting titled, “MS Across populations and Access to Care” addressing barriers to equitable research and care delivery, as well as the relationship between one’s genetics and social determinants of health in multiple sclerosis (MS).

Multiple Sclerosis Concept Map | image credit: AlexBlogood - stock.adobe.com

At this year’s event, Rotstein sat for an interview with The American Journal of Managed Care^® (AJMC®) to explore these topics in more detail. Here, she discussed the role of open science in mitigating barriers in MS, her previous work in the field, and a debate on the interplay between genetics and racially/ethically expressed MS characteristics to drive home the point that MS impacts a wide variety of patients.

This transcript has been lightly edited for clarity and length.

AJMC: How can open science and technology help to eliminate these respective barriers?

Rotstein: Open science is another very sort of promising area, especially for ensuring equitable access to data to different researchers across the world. So I enjoyed that that was highlighted during the session. And I think as scientists, especially as open science increases, we also need to think about how we can break down barriers and facilitate sharing across different communities. But we also need to appreciate that the quality of the research will depend on the data that's there. So, for example, we know that there is less recruitment of racially and ethnically diverse individuals into clinical research, and also less retention. So, in order for the results to emerge from those data platforms, we also need to think about the participants who are going into those platforms, and how we can ensure that there is diverse representation.

AJMC: In May 2023, you helped to write an article that appeared in JAMA Neurology on MS prevalence by race and ethnicity; it acknowledged that MS does not just affect people of White European ancestry. How can these findings help to eliminate MS research and care delivery inequities?

Rotstein: For a very long time in neurology education, people were taught that MS was a disease of Northern Europeans and their descendants. And when I was going through medical school as well, that's what I was taught. So, I think the first step is to improve awareness that MS today is a disease of many different communities that affects people of all different backgrounds. And that was true in the past as well.

As we look at prevalence studies, what we've seen is that the environment is really the key determinant of risk for MS. So even when people migrate from areas where the MS risk or prevalence is lower, over a number of years they take on the risk—or at least have an increased risk—in the new environment. And then we see in second generation immigrants that they have even higher risks compared with similar people who have lived generations in that country. So, I think the first step is education. We need to make sure in the medical schools, and also in our neurology residency programs, we're teaching that MS is a disease of people of all different backgrounds. And as physicians, we always need to consider MS no matter what the person's racial background is.

AJMC: During Session 2, there was a debate on the topic of whether racial and ethnic disease phenotype differences are driven by genetics. Do you believe these differences are driven by genetics? Why or why not?

Rotstein: It’s a complicated question. I mean, I think we know there are genetic risk factors, but I don't think that genetics is the principal component. I think it's a minor component. And really, social determinants of health are much more important when we think about differences in disease phenotypes across communities. I thought that was very nicely highlighted in the debate.

Both speakers mentioned that race is a social construct. So, when we're looking at genetics, we can talk about ancestry. And there is some correlation between ethnic groups and ancestry, but they're by no means identical concepts. And I think we know, when we look at Black and Hispanic communities in the United States having an earlier age of onset of MS and faster disability accumulation, that there are many social differences that contribute to that. So, access to care and insurance is an important determinant. We also know that things like income and education affect access to neurologic care. So, there are many potentially reversible factors that we can address so we can achieve, in the future, more equitable goals across people living with MS of all different backgrounds.