This Wednesday (03), the Social Affairs Committee (CAS) held a hearing to discuss the challenges of rare diseases and new emerging technologies for their treatment. The debate was held at the request of senators Dr. Hiran (PP-RR) and Damares Alves (Republicanos-DF).

Neuromyelitis optica is an autoimmune disease that affects the central nervous system, which can cause loss of vision, spasms, dizziness and difficulty moving.

Dr. Hiran said the debates are important to improve legislative texts to truly provide more access to everyone. The public hearing was attended by experts and representatives of entities such as the Brazilian Association of Neuromyelitis Optica. The president of ABNMO, Cleide de Lima Pires, reported a lack of care structure for people who have the disease.

The president of Crônicos do Dia a Dia Association, Gustavo San Martin, mentioned that a request for an appeal was recently filed to the Ministry of Health evaluate the decision not to incorporate a new drug to NMO.

San Martin also emphasized the Bill 4361/2021, sponsored by representative Silvia Cristina (PP-RO). He argued that this bill could be replicated in the Senate and processed urgently to establish the obligation for Conitec to hold public hearings in cases of unfavorable recommendations for the incorporation of new technologies.