The Azores Write the Rules for Machado-Joseph Support, a Year After the Ombudsman Said the Gap Was Blocking Access
Thursday's Conselho do Governo approved regulation covering mobility and comfort equipment, a home carer and a companion subsidy. The archipelago has the world's highest prevalence of the disease, concentrated on Flores and Sao Miguel.
The Azores government has finally written the rules for supporting people living with Machado-Joseph disease, more than two and a half years after the regional law creating those supports was published and a year after the Ombudsman told the islands to get on with it.
The regional executive (PSD, CDS-PP and PPM) approved the regulation at its Conselho do Governo, which met on Thursday in Ponta Delgada on Sao Miguel. It gives effect to Decreto Legislativo Regional 39/2023/A of 23 November, which had promised the supports without setting out how anyone was meant to obtain them.
Why the Azores
Machado-Joseph disease, also known as spinocerebellar ataxia type 3, is an inherited, progressive neurological condition that gradually erodes balance, coordination, speech and swallowing. It is autosomal dominant, meaning a child of an affected parent has a one in two chance of inheriting it, and it typically emerges in adulthood.
The Azores carry the highest known prevalence of it anywhere in the world, concentrated on Flores and Sao Miguel. The condition was first described in the 1970s in families of Azorean descent living in the United States, and it is named after two of them. For a region of roughly a quarter of a million people, that makes it a public health question rather than a rare-disease footnote.
What the regulation actually provides
Three things become operational. The first is support equipment: aids for mobility, hygiene and comfort, the practical apparatus of living with progressive loss of coordination. The second is the cuidador ao domicilio, a home carer. The third is the subvencao ao acompanhante, a subsidy for a companion.
The home carer arrives cautiously. The government says implementation will begin on an experimental basis through a pilot project, to test whether the response fits what patients and families need and to refine how the various bodies involved coordinate. The stated aim across all three measures is to strengthen autonomy and choice, provide closer and more personalised support, and let people remain in their family and community setting for as long as possible rather than moving into institutional care.
The Provedora de Justica, Portugal's Ombudsman, recommended urgent regulation in 2025, warning that the gap between the law and its implementation was blocking access to both the supports and the specialised resources attached to them. It is the sort of finding the office has been making regularly this year, and one the regional government has now acted on.
The rest of Thursday's council
The same meeting approved several other measures. It amended the resolution governing exceptional and temporary agricultural supports, introduced to cushion producers against Middle East conflict effects on input costs, food prices and the Azorean cost of living. It created the Serviço Regional de Estatistica dos Acores as a public institute under a special regime, giving the archipelago its own statistical body. It authorised spending of €2,036,600.72 on prepared meals for the Sao Miguel health unit. And it revised a cooperation contract with the Santa Casa da Misericordia de Santo Antonio da Lagoa worth up to €6,391,020, financing construction of an inclusion and capacity-building centre and a residential home at Santa Cruz.
What this means for you
- If you or a relative in the Azores has a diagnosis: the equipment and companion subsidy routes now have a legal procedure behind them. The home carer is a pilot, so availability will be limited at first.
- If you are a carer: the subvencao ao acompanhante is the piece aimed at you, and it is the one that recognises unpaid family care as something the region will part-fund.
- If you live on the mainland: this is regional legislation and applies only in the Azores. Mainland patients rely on the national SNS pathways and the general dependency supplements.
- If you follow Azorean policy: the new regional statistics institute is quietly significant. The archipelago has long depended on national INE data that rarely disaggregates far enough to be useful at island level.
