# Lito Sousa medical treatment for Creutzfeldt-Jakob disease

> Live situation record from CLSTR: https://clstr.news/situations/lito-sousa-medical-treatment-for-creutzfeldt-jakob-disease
> Updated: 2026-09-05T20:03:51.000Z. Sources: 48. Developments: 2.

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.

## Claims

- Anvisa authorized the import and use of an experimental medication for Lito Sousa. (corroborated by 3 sources)
- The medication is expected to arrive in Brazil between seven and nine days from last Friday (4). (corroborated by 3 sources)
- The authorization followed existing legal regulations for compassionate use of medication rather than a unique exception. (corroborated by 3 sources)
- Lito Sousa has been diagnosed with Creutzfeldt-Jakob Disease. (corroborated by 3 sources)
- The Brazilian Ministry of Health, Anvisa, and the US FDA recognized the urgency of the case. (corroborated by 3 sources)

## Timeline

### 2026-09-05: Anvisa authorizes experimental drug import for pilot Lito Sousa

Anvisa has authorized the compassionate use of the experimental drug ALN-6457 for pilot Lito Sousa to treat Creutzfeldt-Jakob disease, following established legal protocols.

30 sources. https://clstr.news/cluster/anvisa-authorizes-experimental-drug-import-for-pilot-lito-sousa

### 2026-08-29: Lito Sousa seeks experimental treatment for rare neurodegenerative disease

Aviation influencer Lito Sousa is seeking access to experimental drugs to combat Creutzfeldt-Jakob disease, a rare and fatal neurodegenerative condition, amid high levels of preserved cognitive function.

23 sources. https://clstr.news/cluster/lito-sousa-diagnosed-with-rare-creutzfeldt-jakob-disease-1

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Cite as: Lito Sousa medical treatment for Creutzfeldt-Jakob disease. CLSTR, https://clstr.news/situations/lito-sousa-medical-treatment-for-creutzfeldt-jakob-disease