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Lito Sousa receives experimental ALN-6457 treatment

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2026-09-15 18:17 UTC → 2026-09-17 00:02 UTC · added ~~removed~~

Lito Sousa ~~transitions to home palliative care~~ receives experimental ALN-6457 treatment

Lito Sousa, a 59-year-old aviation specialist and creator of the YouTube channel ‘Aviões e Músicas’, continues to battle Creutzfeldt-Jakob disease (CJD), a rare and fatal neurodegenerative condition caused by infectious prions. While previously hospitalized at Hospital Albert Einstein in São Paulo, Sousa was discharged on September 1 to receive palliative care at home. His wife, Mila Seidl, clarified that this transition is intended to manage symptoms rather than signify terminal status, noting that Sousa remains “cognitive, talkative, and capable of thought” despite significant physical deterioration, including the loss of independent mobility and vision. In a significant medical development, Anvisa has granted exceptional authorization for the importation of ALN-6457, an experimental medication developed by Regeneron Pharmaceuticals. Facilitated by Hospital Israelita Albert Einstein, Sousa is set to become the first person to test this substance for CJD under a compassionate use program. The drug is currently in the pre-clinical stage and has not yet undergone formal clinical trials for this specific prion disease in humans. The medication arrived in Brazil via an American Airlines flight from New York to Guarulhos International Airport. To preserve its therapeutic potential, an emergency operation involving the Brazilian Federal Revenue and Anvisa allowed for customs clearance within minutes of arrival, after which the drug was transported by helicopter to Hospital Israelita Albert Einstein. Following the administration of the treatment, Mila Seidl reported that Sousa’s condition remains stable. Medical teams will monitor his progress closely over the next six weeks to evaluate the drug's efficacy. Seidl also noted the importance of the visibility surrounding Sousa’s case in accelerating access to experimental medical research in Brazil.

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