[REVISION HISTORY]

Lito Sousa medical treatment for Creutzfeldt-Jakob disease

Updated 3 times since CLSTR started tracking revisions of this situation.

What changed

2026-09-06 15:24 UTC → 2026-09-06 20:27 UTC · added ~~removed~~

Lito Sousa, a prominent Brazilian aviation influencer, is battling Creutzfeldt-Jakob disease (CJD), a rare and fatal neurodegenerative condition. Despite the aggressive nature of the disease, Sousa has reportedly maintained a high level of lucidity. To combat the disease, Sousa and his wife, Mila Seidl, sought access to experimental treatments. This effort involved coordination between the Brazilian Ministry of Health, the Ministry of Foreign Affairs, and international institutions to facilitate potential participation in clinical trials. The request was facilitated by Hospital Israelita Albert Einstein. Following these efforts, Brazil’s National Health Surveillance Agency (Anvisa) authorized the importation and use of an experimental medication under compassionate use regulations. Mila Seidl confirmed via social media that the authorization followed established legal regulations rather than being a special exception. The process required specific documentation from pharmaceutical companies and medical examinations. The medication, which required coordination with the U.S. Food and Drug Administration (FDA), was expected to arrive in Brazil within seven to nine days from Friday, September 4, 2026. Specifically, Anvisa authorized the import of ALN-6457, an experimental drug developed by Regeneron Pharmaceuticals. The medication is currently in a pre-clinical stage and has not yet undergone formal human studies for this specific condition. Seidl noted that the family intends to share their experience to assist other families facing rare diseases, highlighting that current procedures for accessing such treatments can be difficult to navigate due to a lack of clear information.

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