Scientist Spearheads Global Initiative to Raise Awareness and Combat HTLV-1, a Lesser-Known Retrovirus Causing Deadly Cancer with No Current Cure or Vaccine
Philadelphia, September 4, 2025 – HTLV 2026, the international conference dedicated to advance discovery research on Human T-cell Leukemia Virus Type 1 (HTLV-1), today announced the launch of a global awareness campaign to combat the virus. The initiative is being championed by the conference Chairperson Dr. Pooja Jain who is a Professor at the Drexel University College of Medicine, Philadelphia, Pennsylvania, USA.
While HIV makes global headlines, its lesser-known “lost cousin” virus HTLV-1 affects about 20 million people worldwide, causing blood cancers with survival rates less than two years. It also triggers devastating neurological conditions, including a multiple sclerosis-like disease called HTLV-1-associated myelopathy (HAM/TSP). This campaign aims to create and accelerate awareness to combat this devastating yet largely unknown threat that remains without a vaccine and cure, mainly due to the lack of adequate dissemination of information and research funding.
HTLV-1 is transmitted by both horizontal and vertical routes, similar to HIV. “Breast milk is a major source of HTLV-1 transmission to infants, yet most mothers have never heard of it, and we need to change that”, says Dr. Jain. HTLV-1 causes adult T-cell leukemia/lymphoma (ATLL), one of the most aggressive forms of non-Hodgkin lymphoma, with a median survival of 6-24 months.
A systematic review found that “migratory flows are significant pathways for the spread, emergence, and re-emergence of infectious agents in different geographic areas,” suggesting that without proper interventions, HTLV-1 can continue to spread to new regions.
“HTLV affects millions of people globally yet remains largely unknown to the public and underrepresented in medical and research arenas,” adds Dr. Jain, who serves as Secretary of the International Retrovirology Association (IRVA, https://htlv.net/), and the Chair of the 22nd International Conference on Human Retrovirology (https://htlv2026.org) to be held in Philadelphia in 2026 from June 3-6. Dr. Jain quotes, “By bringing together patients, caregivers, and researchers from around the world – particularly those from regions where HTLV is endemic – we can foster collaboration, share critical knowledge, and accelerate progress toward prevention and treatment options.”
The campaign aims to:
- Disseminate knowledge and spread awareness while advocating for research funding, clinical trials, and new therapeutics.
- Educate the next generation of scientists and support participation of researchers from underserved regions at HTLV2026, the first major U.S. conference on this virus in 23 years.
Register for HTLV 2026 at https://htlv2026.org
Jaycy Naveen, CEO of MyImaginity, the digital partner, supporting Dr.Jain with the above campaign and fundraiser through the non-profit organization Center for Research & Collaboration, emphasized the importance of raising awareness: “Most people have never heard of HTLV. Through our digital solutions and campaigns at MyImaginity, we aim to raise awareness, mobilize communities, and drive donations to fuel the research and visibility this overlooked disease deserves. We’re also committed to engaging the next generation, empowering youth to explore AI-driven research and become catalysts for scientific equity and innovation.”
- The public is encouraged to donate to the cause by visiting: Fundraiser ‘Cure for Rare Cancer’
- To learn more about the campaign, visit CureForRareCancer
World HTLV Day is recognized annually on November 10th, providing an opportunity to spotlight the ongoing challenges faced by those affected by the virus.
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