Global disparities in HTLV-1 research and response: A unique focus on Caribbean and Polynesian/Japanese and Caribbean populations
Location
Philadelphia, PA
Start Date
17-4-2026 1:30 PM
End Date
17-4-2026 2:30 PM
Description
Human T-cell leukemia virus type 1 (HTLV-1) is a neglected retrovirus with ability to cause a non-Hodgkin lymphoma namely adult T-cell leukemia/lymphoma (ATLL), and the debilitating neuroinflammatory disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). Despite an estimated global prevalence of 5-10 million, systematic surveillance remains absent in most regions, particularly for historically underserved population in the United States, where infection remains largely unrecognized. This epidemiology report examines disparities in HTLV-1 research, diagnosis, and care by comparing endemic Polynesian and Caribbean populations and their diasporas in the United States. Caribbean nations such as Jamaica, Haiti, and Trinidad & Tobago report seroprevalence rates from 1-6%, yet surveillance has declined since the early 2000s. Similarly, Japan’s historical endemicity in Kyushu and Okinawa has prompted national antenatal screening programs in Japan that have reduced transmission, while the United States lacks comparable frameworks. Pacific Islander populations, including Native Hawaiians, Samoans, and Tongans, also face elevated but poorly characterized infection rates compounded by limited healthcare access and data aggregation that obscures disparities. Across these groups, vertical and sexual transmission remain primary routes, reinforced by structural inequities, stigma, and low clinician awareness. The absence of national surveillance and culturally tailored interventions in the U.S. perpetuates underdiagnosis and delayed care. Drawing from Japan’s screening policies, and Brazil’s community-based rapid testing programs, this report proposes integrating low-cost diagnostics, community-led outreach, and equitable clinical trial participation to improve detection and outcomes. HTLV-1 thus represents not only an infectious disease gap but a marker of enduring global and domestic health inequities.
Embargo Period
5-25-2026
Global disparities in HTLV-1 research and response: A unique focus on Caribbean and Polynesian/Japanese and Caribbean populations
Philadelphia, PA
Human T-cell leukemia virus type 1 (HTLV-1) is a neglected retrovirus with ability to cause a non-Hodgkin lymphoma namely adult T-cell leukemia/lymphoma (ATLL), and the debilitating neuroinflammatory disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). Despite an estimated global prevalence of 5-10 million, systematic surveillance remains absent in most regions, particularly for historically underserved population in the United States, where infection remains largely unrecognized. This epidemiology report examines disparities in HTLV-1 research, diagnosis, and care by comparing endemic Polynesian and Caribbean populations and their diasporas in the United States. Caribbean nations such as Jamaica, Haiti, and Trinidad & Tobago report seroprevalence rates from 1-6%, yet surveillance has declined since the early 2000s. Similarly, Japan’s historical endemicity in Kyushu and Okinawa has prompted national antenatal screening programs in Japan that have reduced transmission, while the United States lacks comparable frameworks. Pacific Islander populations, including Native Hawaiians, Samoans, and Tongans, also face elevated but poorly characterized infection rates compounded by limited healthcare access and data aggregation that obscures disparities. Across these groups, vertical and sexual transmission remain primary routes, reinforced by structural inequities, stigma, and low clinician awareness. The absence of national surveillance and culturally tailored interventions in the U.S. perpetuates underdiagnosis and delayed care. Drawing from Japan’s screening policies, and Brazil’s community-based rapid testing programs, this report proposes integrating low-cost diagnostics, community-led outreach, and equitable clinical trial participation to improve detection and outcomes. HTLV-1 thus represents not only an infectious disease gap but a marker of enduring global and domestic health inequities.
Comments
Presented by Shari Sawney.