Friedreich's Ataxia: Public Consult May Define Access to Treatment via SUS

A public consultation opened by the National Commission for the Incorporation of Technologies in the Unified Health System (Conitec) is mobilizing patients, families and health professionals throughout Brazil. It is the Public Consultation No. 101/2026, which evaluates the incorporation of omaveloxone for the treatment of Friedreich's Ataxia in patients aged 16 years or older, through the SUS. Contributions can be made until October 20, through the website (https://brasilparticipativo.presidencia.gov.br/processes/consultas-publicas-conitec/f/5686/).

The proposal under analysis may change the reality of hundreds of families living with the rare, degenerative and progressive disease. And for those who live this routine, every day of waiting weighs.

What is Friedreich's ataxia?

It is a rare genetic disease that affects the nervous system and motor coordination. Manifestations include progressive loss of walking ability, fatigue, metabolic changes, and cardiomyopathy. The disease compromises the activities of daily life and can evolve into fibrosis, arrhythmias and heart failure — pointed out by recent scientific publication as an important cause of mortality in these patients.

Desabafo

The report of the Portal Boca no Trombone spoke with Fernanda Cenci Queiroz, mother of Gabriel Queiroz Pereira, 17, who are residents of Assis (SP). Fernanda Cenci said that she is living the countdown to the public consultation and, at the same time, the anguish of seeing the treatment of her son through the courts almost over.

Fernanda is president of the Brazilian Institute of Ataxias. Created in February this year, it aims to welcome families who live the ataxia and strengthen the community in the construction of public policies that are non-existent for those who live this condition. She explained that her child has symptoms of loss of motor coordination and imbalance since the age of 5.

In an emotional account, she says she got the drug three months ago, but it should have been over by last week. It just didn't end because she reduced the dose.

"Today I gave him two pills, he has to take three, and there were only two more in the pot. That's the time you talk like that, I'm gonna cut it down to one to get meds for two more days? Will the medicine come tomorrow? It was supposed to be Tuesday and it didn’t come,” he said.

Fernanda reports the difficulty within the system: the deposit took 30 days to be released and the judge still has a deadline to authorize the transfer. In the meantime, your child is left without treatment. "My son is going to be left without a treatment for a serious illness, and it's all legal, it's all within the law. That’s already weight to hell with,” he says.

For Fernanda, who is among the few who have been able to access the drug, the situation shows the urgency of incorporation into the SUS. In Estados Unidos, the remedy has been around for about 4 years. “Four years for a person with Friedreich’s ataxia is a lifetime. Four years ago my son was still walking. We live in a countdown. Anyone who has ever experienced a public consultation knows that every contribution is worth gold. It's 20 days of consultation, I've lived 15 and I'm spending the last five and it weighs as hell. So my appeal: if you are before October 20th, please participate. Hundreds of people with Friedreich’s Ataxia need this technology to live,” he said.

Consultation

Fernanda recalled that in September there was the first meeting of Conitec, which denied incorporation at that time. "They want to listen to the population and then, at the second meeting, re-evaluate the incorporation or not."

How to participate

Participation is open to the whole society, not just patients and family members. To contribute, you must be logged in to the site http://gov.br

The Conitec analysis is available in the Technical Report and the Report for the Society. After login, the session expires in 30 minutes. In case of message of "system in maintenance", update the page with F5 or send print to [email protected] with copy to [email protected].

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