The fight to incorporate ataxia medication into the SUS

Our deepest gratitude to "Fredericas" Letícia Mota and Suellen Garcia, who overcame the fatigue inherent to the disease and managed to approve in the plenary session of the 5th National Conference of Persons with Disabilities the motion appealing to the authorities so that the first medication for Friedreich's Ataxia (Skyclarys) is incorporated into the SUS and distributed by the High Cost Pharmacy *after it is approved by Anvisa*.

The motion was approved and will be included in the final document to be forwarded to governments at all three levels as a suggested public policy for people with disabilities. We also thank the three mothers of "Fredericos" who attended the meeting as chaperones and were instrumental in collecting the 144 signatures of support required.

We also thank @Josiel.Barreto.oficial, from the Santo Antônio de Jesus Municipal Council for People with Disabilities and the Bahia State Council, and @Luciana.inclusao.sp, who gave us all the support and guidance to ensure the motion was approved. We cannot forget the mother of "Frederica" Lane Menezes, who discovered Josiel.

We are also grateful to all the silent and courageous mothers and patients who have helped us through this process. The fight is hard and long, and we still have much to achieve, but we move forward, "living and learning."

*If you have ataxia, register at abahe.org.br

Source: Amália Maranhão, Director of Abahe

[Post published on 07/14/2024 by Márcio Galvão]