Multiple Sclerosis in Latin America: Progress and Challenges
In 1923, a Brazilian fifth-year medical student named Aluizio Marques, while vacationing in the coastal city of Recife, came across a “classic Charcot’s case of spasmodic paralysis, intention tremor and scanning speech.” This case served as his thesis dissertation and represented the first case of multiple sclerosis (MS) reported from Latin America. Years later, Marques eventually became a respected professor of neurology. For decades, MS was considered a rare disease in the tropics adhering to the traditional notion that this disorder primordially affected white populations of northern European origin. This belief was accentuated by a report from Alter and Olivares, who stated in 1970 that the prevalence in Mexico was approximately 1.7/100,000 – “one of the lowest in the world.” For nearly twenty-five years thereafter, this finding was theoretically generalized to the rest of the Latin American (LA) region.
In the 1990s, however, updated reports from Mexico and studies from Cuba, Argentina, Brazil and Guatemala indicated increasing numbers of neurological cases identified as MS. With the rise of MS cases in the LA region, the need for an organization supporting MS research, conducting epidemiologic studies, and promoting access to MS therapies was increasingly recognized, and as a result, the Latin American Committee for Treatment and Research in MS (LACTRIMS) was founded in 1999. The creation charter was formed by twenty-one countries, which included Mexico, the Spanish-speaking Caribbean nation islands, and the Central and South American countries. The advent of regionally organized neurology programs about MS stimulated interest in this disease that was once traditionally considered rare and uncommon in the LA region.
Latin American populations are considerably heterogenous. Mestizos constitute the largest ethnic representation, followed by whites, people of African ancestry and Native American groups. Mestizos and Afro-Latinos are the result of genetic admixtures taken place for five centuries among Europeans, the original American peoples, and groups of African ancestry. LA patients with MS belonging to these mixed populations of relatively recent advent in the world often carry the same MS genetic marker, HLA-DRB1*1501, of most white Europeans affected by the disease. Interestingly, a common observation seen across many LA-based epidemiological studies was the minimal prevalence of MS in non-mixed, indigenous Native Americans, of whom represent a significant proportion of the population in some countries.
Yet, it appears that the disease frequency across LA countries has increased in substantially in the past twenty-five years. Geographically, the prevalence of MS across Latin America shows substantial zonal variations, with the lowest seen in Nicaragua and the highest are seen in Buenos Aires and San Pedro Garza Garcia. Diverse epidemiological techniques have been utilized in national prevalence estimations, though lacking in uniform methodologies across studies, and the overall observation appears to be that the disease frequency has increased in the last twenty-five years in LA countries. The incremental identification of MS in this region is most likely due to multiple factors, including modernization of neurological education, improved diagnostic capacities, and increased societal participation.
A multi-stakeholder consensus on research priorities developed by LACTRIMS to improve patients’ care showed particular concerns about healthcare access, costs of the disease, physical and cognitive evaluation and rehabilitation, quality of life, symptom management, prognostic factors, the need for MS care units, and patient’s management during public health emergencies like the COVID-19 pandemic. All these issues are projected to be addressed by study groups supported by LACTRIMS and local medical associations. In addition, to support future generations of neurologists and trainees, LACTRIMS provides MS Clinical Fellowships to Latin American neurologists in three academically and internationally recognized centers located in Mexico City, Buenos Aires, and Porto Alegre. Continuing medical education programs addressing diverse components of MS care, from diagnosis to management as well as informational seminars to patients’ groups, are constantly being offered supported and organized by local MS associations.
As an emergent disease in Latin American countries, MS constitutes an immense socioeconomic burden upon national healthcare systems. Strategies to face this growing reality will need to be developed through a coordinated effort involving healthcare professionals, public health officials, policymakers, and patients themselves. Yet, despite the challenges facing MS care in Latin America, significant progress continues to ensue, demonstrating the unfaltering spirit of the association and support among the caregivers and care recipients.
Victor M. Rivera, MD, FAAN, is a Distinguished Emeritus Professor of Neurology at Baylor College of Medicine and Emeritus/Honorary Neurologist at Houston Methodist Hospital in Houston, Texas, USA. He is a Senior Member and Fellow of the American Academy of Neurology, Founder of the Mexican Academy of Neurology and the Latin American Committee for Treatment and Research in MS
(LACTRIMS). Dr. Rivera also serves as an advisor of the Central American and Caribbean Forum for MS (FOCEM). He is the Founder and inaugural Director of the Maxine Mesinger Multiple Sclerosis Comprehensive Care Center Clinic at Baylor College of Medicine in Houston, Texas. Dr. Rivera has been recognized with unprecedented Lifetime Achievement Awards by both the Consortium of MS Centers (CMSC) and the National MS Society (US), and awarded the ‘2022 Giants in MS’ recognition from the CMSC, Global Impact Category.