Cover Story: Disease Effects and Needs of Minority Populations with MS
By Susan Wells Courtney
Reviewed by Jack Burks, MD
With contributions from
Lilyana Amezcua, MD, MS
Jacqueline Bernard, MD, FAAN
Laura Hancock, PhD
Research has shown that MS is a heterogeneous disease, meaning that the factors involved are diverse. Studies have also shown that genetic predisposition, gender, and environment all come into play with the development and progression of the disease. However, as researchers work to better understand the disease course and identify effective treatment targets, an important detail has become clear: MS is not the same for everyone diagnosed with the condition.
MS Varies among People of Different Ethnic Backgrounds
Until recent years, published studies did not focus on the differences between Caucasians and ethnic minorities in the diagnosis, symptoms, treatment, and progression of MS. As a matter of fact, as researchers review published results of clinical trials, they find that minorities are significantly underrepresented, and this means that the findings as they relate to minorities are often difficult if not impossible to confirm.
For this reason, researchers have turned to information provided through surveys, data collection, MS centers, and MS specialists in an effort to confirm various differences that may exist between the ethnic groups. These findings help the medical community to understand more about an individual’s disease diagnosis and progression, how this individual might respond to certain treatments, along with developing an evidence-based treatment plan.
Much of the research presented in this article relates to individuals who are Caucasian American, African American, and Hispanic American, as most of the literature focuses on these groups. Many other factors are involved, including age, gender, and ancestral background. Certain genetic traits are seen in those with European versus non-European background and Asian versus non-Asian background. Additionally, if someone has immigrated to the United States, he or she may have a different disease course compared to someone of the same ethnic background who either immigrated to the United States at a different age, or who was born here. These are all details that will be discussed later in the article.
How MS Differs between MS Subpopulations
Generally speaking, some minority groups tend to be younger at the onset of their symptoms. They may have a greater likelihood of opticospinal MS, which affects the optic nerves and spinal cord more than the nerves of the brain. Non-Caucasians are also more likely to have transverse myelitis, which causes inflammation in one location across both sides of the spinal cord. This can cause a variety of physical symptoms, and similar to relapsing forms of MS, function may return when the inflammation subsides. However, some of its symptoms may not fully subside.
Depending upon one’s ethnic background, MS may also be more aggressive – resulting in earlier disabilities – and respond poorly to certain disease-modifying therapies. Through future studies with minorities, researchers may learn more about disease progression in these minorities, and which disease-modifying therapies may be the most effective for each subgroup of the MS population.
In the past, Caucasian Americans were thought to have the greatest incidence of MS. However, in two recent studies – one a retrospective cohort study of 496 newly diagnosed individuals, and another contemporary study of 2,691 Gulf War-era military veterans with MS – African Americans had a higher incidence of MS compared to Caucasian Americans, Hispanic Americans, and Asian Americans. Other studies have shown that minority populations, including African Americans and Hispanic Americans, have a higher incidence of MS in the United States, versus those with the same ethnicity but living in their ancestral countries of origin.
Compared to Caucasian Americans, African Americans have a greater likelihood to develop opticospinal MS, transverse myelitis, and a more aggressive disease course, as noted previously. However, African Americans may be older at disease onset, although not all studies come to the same conclusion in terms of age at onset.
Additionally, when compared to Caucasian Americans, African Americans may experience more frequent relapses, poorer post-relapse recoveries, a shorter time progressing from relapsing-remitting MS (RRMS) to secondary-progressive MS (SPMS), and more severe impairment of mobility. T2 and T1 lesion volumes are higher (indicating more disease activity) as shown on magnetic resonance imaging, and other signs of disease activity may also be higher (such as other MRI and cerebrospinal-fluid findings).
Compared to Caucasian Americans, some African Americans may experience greater retinal damage, affecting their vision. This is particularly true for individuals who have or had acute optic neuritis (AON), which may suggest a more aggressive disease course with an increase in inflammation.
While African Americans are believed to experience a more aggressive disease course and not respond as well to certain disease-modifying therapies, readers should note that more studies are needed to confirm these findings, and many of the earlier studies were not designed specifically to identify these outcomes. Additionally, other controllable factors, including access to care and seeing an MS specialist, may result in better outcomes.
In terms of sub-optimal treatment response, studies suggest that African Americans do not respond as well to some of the approved disease-modifying therapies for MS. However, studies are being conducted to see which medications are the most effective for this ethnic group, so that physicians may make evidence-based treatment recommendations for their patients.
Another potential factor is Vitamin D levels, which influence certain genes involved with MS and have also been implicated in the development and progression of the disease. In a study conducted to evaluate the association between Vitamin D and disease severity in African Americans, researchers compared individuals with and without MS; both groups consisted of African Americans. While the study found that the African Americans with MS had lower levels of Vitamin D, and a larger percentage of the group was deficient in Vitamin D, no association was made between this level and disease severity.
Hispanic Americans often are diagnosed at an earlier age than Caucasian Americans. They are more likely to present with opticospinal MS, optic neuritis (inflammation along the optic nerve), and/or transverse myelitis. Hispanic Americans have a much lower risk of MS compared to Caucasian Americans and African Americans. Researchers believe that this fact, combined with the tendencies to present with the conditions noted above, may be related to their genetic ancestral variations.
While female MS patients (of any ethnic background) who have had MS for a longer period of time and have walking issues are more prone to migraine headaches, Hispanic Americans are more likely to suffer from chronic migraines. The authors of that study note the importance of a thorough evaluation and headache treatment by their doctor to ensure the best care for this challenging symptom, which has been shown to impact daily life.
If not born in the United States, the timing of one’s migration is a significant determinant of mobility problems in the future. Hispanic Americans who migrated to the United States after the age of 15 and who are diagnosed with MS, have an increased risk of developing mobility limitations. If diagnosed at an early age, particularly if under 18 with pediatric MS, and if born in the United States, such individuals are less likely to experience severe mobility issues in the future.
Similar to African Americans, Hispanic Americans are more likely to have a Vitamin D insufficiency. Also, Vitamin D levels in Hispanic Americans were not affected by season nor associated with more severe disability. Researchers believe that factors affecting Vitamin D levels as well as their recommended doses may be different for the various ethnic groups.
Lilyana Amezcua, MD, MS is the assistant professor of clinical neurology at the University of Southern California (USC) MS Comprehensive Care Center in Los Angeles. She is a neurologist who is fellowship-trained in MS and is studying issues affecting Hispanic Americans with MS.
Over the past eight years, Dr. Amezcua’s research has focused on the Hispanic/Latino population. She has started the first MS registry for Hispanics in the United States at USC. She has been collecting details on patient cases – looking at clinical characteristics, blood samples, and imaging (MRI scans) – and is starting to see if the disease is different among individuals with this ethnicity versus the white (Caucasian) population.
From an epidemiological standpoint, Dr. Amezcua explains that clinical differences seen in different patient populations make a lot of sense according to the regions where these populations originally lived. Geography and racial/ethnic differences impact who gets MS and could also impact disease course. When comparing different groups, they must be from the same geographic region. Hispanics have diversity. As most people know, Hispanics may be from Cuba, Mexico, Puerto Rico, South or Central America, etc., and different factors are involved depending on where they have lived or are currently living. MS is a complex disease and multiple genetic and environmental factors are involved.
Dr. Amezcua points out, “Hispanics thus far present with initial symptoms at an earlier age, approximately three to five years earlier on average. While 80 to 85 percent of Caucasians are initially diagnosed with RRMS, this percentage is significantly higher in Hispanics, with up to 90 percent initially diagnosed with RRMS; however, this may be expected when receiving a diagnosis at a younger age. Approximately 10-15 percent of Caucasian Americans are diagnosed with primary-progressive MS (PPMS), so Hispanics by comparison are less-often diagnosed with this form of the disease.
“We also see a lot more spinal cord involvement in Hispanics; while such studies with this population are sparse, we understand this from clinical observation. Greater spinal-cord involvement correlates to increased disability, more significantly affecting ambulation, but more studies are needed. We do not yet know if the conversion rate from RRMS to SPMS is the same between Caucasians and Hispanics, but hope to have those types of longitudinal studies in the near future.
“In our research, we have two questions that we are seeking to answer. First, through a better understanding of common genetic variables, we want to learn if genetics play a role in reducing the risk of MS. And second, we want to know if the behavior of the disease after diagnosis is more severe, and if the disease course is more aggressive. We need to look at variables such as genetics, environment, social and cultural factors, to determine how they may influence the risk of MS and disease course after diagnosis.”
With regard to Asian Americans, MSAA’s Chief Medical Consultant Dr. Jack Burks explains, “Three terms are used to describe the different variations of MS in Asians. These include Caucasian/Western-type RRMS, opticospinal MS, and neuromyelitis optica or NMO, which was formerly known as ‘Devic’s disease.’ The primary message here is that Asians do get MS and the prevalence may be increasing.
“Many Asian individuals with MS reside in the United States, United Kingdom, and other Western countries. While MS in Asians is still less common than MS in Caucasians, MS in Asians (opticospinal and NMO) is more likely to affect the vision and spinal cord, although cerebral lesions in the brain are seen on MRI.
“MS in Asians may be more severe, more rapidly progressive, and may not respond to traditional MS medications as well as RRMS in Caucasians. We do not have enough experience with current disease-modifying therapies within the Asian population, since clinical trials have not been designed to study the effects on Asians with MS. We hope that more studies will be conducted in the future to provide greater insight into the disease course and treatment response for Asian individuals with MS.”
Barriers Faced by Minorities with MS
A number of issues interfere with minorities being able to receive proper treatment as well as participate in clinical trials. For instance, nearly one-third of individuals with MS who are part of a minority have never gone to an MS specialist. Those who do see an MS specialist, such as a neurologist who specializes in MS, or an MS center with a staff of professionals who specialize in MS, are significantly more likely to be satisfied with their access to high-quality care. Additionally, these individuals are significantly more likely to participate in a clinical trial. They also have family members who are involved and help with obtaining information for the patient.
Education is another barrier faced by many minority members with MS, who may not know where to access information, or who need help in understanding the information. Additionally, some minority members with MS do not speak English and need materials written in another language. These same individuals may also have trouble communicating with their doctor or healthcare team, possibly having difficulty expressing their thoughts and understanding the doctor’s responses.
Socioeconomic status and government versus private insurance are predictors of barriers as well. Individuals with more children and who are not on treatment also experience greater barriers to receiving appropriate care. Other barriers to accessing and utilizing specific care include a lack of insurance, lower income, lower educational levels, language (mentioned earlier), and computer literacy.
Other cultural areas that interfere with receiving appropriate care and participating in clinical trials include religious beliefs and distrust in the medical community. First, with religious beliefs, some individuals are opposed to different types of care, such as taking medications, undergoing medical procedures, and receiving blood transfusions. And second, distrust is another big issue among minorities, where patients fear that they may be used as a “guinea pig” with an experimental treatment.
Also of interest is how members of this population differ in their perceptions of the disease. Dr. Amezcua explains that a high proportion of Hispanics with MS who were not on any type of disease-modifying therapy were found to believe that their MS was a result of some type of cultural idiom. For instance, some believed they had developed MS because of a terrible experience as a child, while others attributed the disease to the stress of immigration. Of this group not on any type of treatment, many had MS for more than 10 years, but few understood the biological aspects of the disease.
Solving Problems Faced by Minorities
To precisely identify how the disease affects people of different ethnic backgrounds, and to accurately assess the effectiveness of the treatments, well-designed studies with large numbers of minority patients need to be conducted. As new information becomes available, advocacy organizations and medical professionals need to raise awareness.
Education needs to be customized for the audience, providing simple access to educational events, webinars, easy-to-read publications, and online information. If appropriate, some of the information will need to appear in another language to assist those who speak English as a second language. Family members should be encouraged to accompany the patient during doctor visits and assist with communicating with the physician and other members of the healthcare team.
Programs need to be created to promote the components of a healthy lifestyle, along with other patient-education topics, such as medication adherence and symptom management. The medical community will also need to find ways to promote trust within the subgroup of patients.
To help fulfill the needs of minorities with MS, MSAA serves on various advisory boards designed to identify and assist underserved populations. MSAA also conducts educational programs dedicated to certain subpopulations of the MS community and plans to continue these types of programs in the future.
Dr. Amezcua states, “Researchers are working very hard to learn more about the different subpopulations in MS. While we have had a lack of diversity with our data in the past, current and future studies aimed at capturing genetic information will be of great help in identifying genetic markers.
“This type of research, along with longitudinal studies that will provide more information on how the disease behaves over time within the different ethnic groups, will be instrumental in forming a better understanding of MS. This is an exciting time for researchers and the MS community, as we get closer to discovering both a cause and a cure for MS.”
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