Public hearing in the Senate on the incorporation of medicines for rare diseases by the SUS (Nov 2024)
- Márcio
- Nov 15, 2024
- 1 min read
On November 12, 2024, a public hearing was held by the Permanent Subcommittee on the Rights of Persons with Rare Diseases (CASRaras) in the Senate. The panel was chaired by Senator Damares Alves.
The debate is on access for people with rare diseases to medications, medical devices, and technologies through the Unified Health System (SUS). The committee's purpose is to monitor and improve public policies targeting people with rare diseases. Civil society can participate by submitting comments and questions through the Ombudsman's Office (0800 061 2211) and the e-Citizenship Portal.
ABAHE (Brazilian Association of Hereditary and Acquired Ataxias) sent representatives to the event, as did several other patient associations. ABAHE is currently monitoring the ANVISA approval process for SkyClarys, a drug for Friedreich's ataxia (FA), to be marketed in Brazil. Once approved, a new effort will begin: requesting CONITEC (National Health System) to incorporate the drug into the SUS (Brazilian Unified Health System), so that it is accessible to Brazilian FA patients.
At the event, businessman Antoine Daher, president of Casa Hunter and president of Febrararas (Brazilian Federation of Rare Disease Associations) criticized the Ministry of Health and CONITEC, and demanded a National Confrontation Plan, the Secretariat for Special Attention to Rare Diseases, and an adequate budget to enable the implementation of public policies for rare disease patients.
Link to the event on YouTube (Senate TV Channel)
