Ombudsperson recommends regulation of support for Machado-Joseph patients in the Azores

The Ombudsperson has addressed a recommendation to the President of the Regional Government of the Azores, calling for the urgent regulation of Regional Legislative Decree 39/2023/A, of 23 November, which establishes support measures for people diagnosed with Machado-Joseph disease. The initiative is the result of analysing complaints submitted by those affected, who denounce the lack of regulation as an obstacle to effective access to the support provided.

Since the regional decree has been in force for over a year, its effectiveness has been compromised by the lack of regulation, which has immediate practical implications, particularly in terms of access to healthcare, obtaining social support and the availability of specialised resources. This situation also contributes to perpetuating inequalities and worsening the difficulties faced by those affected.

Machado-Joseph disease is a rare neurodegenerative condition with a particularly high prevalence in the Autonomous Region of the Azores. Characterised by progressive motor disability and the lack of a definitive cure to date, this condition has a severe impact on the quality of life of patients and their families.

The Ombudsperson emphasises that the lack of regulation represents an unfair and harmful omission, which goes against the principles of supporting the most vulnerable. She therefore reiterates the need for a swift and effective response from the competent authorities.

You can read the full Recommendation here [in Portuguese only].