Editor’s note: The Multiple Sclerosis News Today news team is providing in-depth and unparalleled coverage of the virtual ACTRIMS Forum 2021, Feb. 25–27. Go here to see all the latest stories from the conference.
Despite the overall low frequency of cases, multiple sclerosis (MS) in Latin America poses substantial socioeconomic challenges throughout the region, with difficulties in getting medical care, obstacles in obtaining a correct and timely diagnosis, a lack of insurance to cover medical and treatment costs, and little access to safe and effective medicines.
However, researchers and advocates note that efforts to improve MS education, management, and access to quality therapies throughout Latin America are underway.
“Initiatives to integrate the neurological community with MS organizations and stakeholders to improve education on the disease, its management, and access to quality therapy appears to be a region-wide unified effort,” Victor Rivera, MD, a professor of neurology at Baylor College of Medicine, in Texas, said during a presentation at the virtual Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2021.
Rivera‘s research has assessed MS frequencies throughout Latin America and the region’s local health policies, available neurological care, and the ongoing education efforts involving the neurodegenerative disease.
He presented his findings at ACTRIMS, held virtually from Feb. 25 to 27, in a talk called “The Reality of Latin American Epidemiology.”
The neurologist started his talk by noting that “the U.S. is the only country in the world that utilizes the term ‘Hispanic,’ ‘Hispanic/Latino.'” According to Rivera, the term Hispanic “is not a correct term, it is not inclusive” and it “has had a pervasive utilization in the media, government agencies, and the general public.” He thus prefers the use of the term Latin Americans.
Historically, data on MS cases in Latin America has been largely absent. Although studies on the topic have steadily grown since the foundation of LACTRIMS — the ACTRIMS Latin American counterpart — in 1999, the disorder’s socioeconomic and political impacts remain unknown.
Prevalence data is available from 15 countries and national incidence studies have been done for four countries, specifically Panama, Uruguay, Chile, and Argentina. The overall data shows that MS rates vary widely from country to country and, within geographically larger countries, by zone.
MS prevalence in most Latin American countries ranges between 0-5 per 100,000 people to 5.5-20 per 100,000, according to the MS International Federation and the World Health Organization (WHO).
Two urban areas — Buenos Aires, in Argentina, and a suburb of the northern Mexican city of Monterrey — recorded frequencies of 30 or more MS cases per 100,000 people.
Puerto Rico showed the region’s highest lifetime prevalence, at 77.7 cases per 100,000. But, as Rivera explained, that is “most likely because they have a foundational registry that captures practically every case where they mentioned the island.”
A study analyzing six Central American countries and the Caribbean nations of Cuba, Puerto Rico, and the Dominican Republic found a disability index — assessed via the expanded disability status scale — of over 3.5 (56%) among study participants, potentially indicating additional socioeconomic burdens among those communities.
Moreover, the number of neurologists across Latin America appeared relatively low, at approximately one per 100,000 people, below the 2.5 recommended by the WHO.
The good news, according to Rivera, is that MS patient advocacy and research groups are continuing to grow in the region.
Eight CTRIMS national associations — all functioning as LACTRIMS chapters — have cropped up, for example. Furthermore, FOCEM, known in English as the Central American and Caribbean Forum on MS, has recently emerged as an international MS study group.
These organizations, Rivera explained, help to educate both the public and government officials on the realities of MS and the needs of those living with the disease. This, he said, has contributed to the officials’ motivation to obtain disease-modifying therapies (DMTs) for patients in their regions.
“According to the MS International Federation, 76% of DMTs in the world are funded by taxation through social security or mandated by an official health insurance,” Rivera said. “However, this is not a reality in at least 90 countries, and the lack of access in 46% of countries is due to affordability and in low-to-middle income countries, it increases to 86%.”
In addition to less access to DMTs, many Latin American MS patients experience delayed diagnoses and limited access to medical care.
The Latin American Network of MS Associations reported in 2018, for instance, that in a survey of 1,469 MS patients, 37% went undiagnosed for six months after their first symptoms. Another 37% experienced delays of more than two years in obtaining a diagnosis.
Although physicians ordered diagnostic MRI scans for nearly all of these patients (99%), a lack of insurance prevented 40% from getting one. Even after diagnosis, this survey found that 30% of respondents ran into problems getting their prescribed medications due to a lack of availability at pharmacies; 16% had no access due to lack of coverage.
In addition to working to improve these statistics, Latin MS organizations play key roles in preventing the indiscriminate approval of medicines that lack proper safety and efficacy evidence, as might occur if health agencies are uninformed about MS.
“The best example,” Rivera said, “is the Guatemalan Association of Multiple Sclerosis, [which] was able to prevent the licensing of unapproved biosimilar products without efficacy and data safety for MS in the country.”
Overall, Rivera’s analysis showed that MS has a medium-to-low prevalence in Latin America and “appears to be influenced by unique genetic admixtures, geographic and environmental factors,” he said.
Despite its relatively low prevalence on a region-wide scale, there is evidence that MS affects the regional health systems, posing “substantial socioeconomic challenges to a region where the economy is still in development,” Rivera said, adding that the situation is “now significantly worsened by the COVID-19 pandemic.”
Efforts are underway across the region, however, to bring stakeholders such as MS organizations and the broader neurological community together. The goal, he said, is to improve MS education, management, and access to quality care.
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