SMA Ireland welcomes an important development in access to treatment for adults living with spinal muscular atrophy. We have been advised that reimbursement for Evrysdi, also known as risdiplam, will be extended to a defined group of adults from 1 October 2026. Following this development, we have been engaging with clinicians to clarify the practical steps for adults who wish to be considered.
After a long campaign, this is a significant moment. Our focus now is on helping people understand where to go, what information to provide and what may be needed before treatment can begin.
What does this development mean?
The adult group described in the published announcement is people aged 18 years and older with a clinical diagnosis of SMA Type 2 or Type 3, or with one to four SMN2 copies, who have not previously received a disease-modifying therapy for SMA.
This is not automatic access for every adult with SMA. Individual assessment and reimbursement approval are still required. Under the HSE process, an approved consultant must submit an application on each patient’s behalf. SMA Ireland cannot determine eligibility or approve treatment.
People already receiving Evrysdi through early access, or who have previously received another SMA treatment, should seek individual advice rather than assume that the new arrangements apply automatically.
Your first step: contact the Beaumont Neuromuscular Service
The Consultant Neurologists at Beaumont Hospital, advise that both existing and new patients who wish to be considered for treatment can contact the Beaumont Neuromuscular Service.
Please email:
To: shilaschandrakantujagare@beaumont.ie
Cc: neuromuscularcns@beaumont.ie
Suggested subject: Adult SMA – request to be considered for Evrysdi pathway.
In your email, explain that you are an adult living with SMA and would like guidance on being considered under the Evrysdi pathway.
What information should you include?
Please include:
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Your personal and contact details: full name, date of birth, phone number and home address.
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Your GP’s details: name and practice.
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Your current consultant and hospital, where applicable.
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Your SMA type, if known.
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Your genetic information: whether you have a report confirming SMA and whether your SMN2 copy number is known.
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Your treatment history: whether you are untreated, receiving Evrysdi through early access, or have previously received any SMA treatment.
Where information is unknown or unavailable, say so. You can make an initial enquiry without first resolving every gap in your records.
What happens if you do not have a genetic report?
Some people may already have up-to-date genetic confirmation, including their SMN2 copy number. Others may have an older report, an incomplete report or no readily available copy.
Beaumont has advised that repeat genetic testing can be arranged through the neuromuscular clinic where genetic confirmation is missing, outdated or incomplete.
Not knowing your SMN2 copy number does not mean you need to arrange testing independently before contacting the service. Explain what you know and ask the clinical team whether existing records can be used or further testing is needed.
Why is a specialist physiotherapy assessment needed?
Beaumont has advised that baseline and follow-up functional assessments will be required. These assessments must be completed by physiotherapists trained in SMA outcome measures, with continuity for assessments over time.
A baseline assessment records your starting level of function so that later assessments can be compared with it. The clinical team will determine the appropriate measures for you.
These are not interchangeable with a routine physiotherapy appointment. Beaumont Hospital has advised that private physiotherapy would not be appropriate for this pathway because of the specialist training and ongoing assessment requirements.
What should you do if you are already receiving Evrysdi through early access?
Make your current treatment status clear in your email, and include the name of your treating neurologist.
Because the announced adult group is defined by previous treatment status, an automatic transfer from early access to HSE reimbursement should not be assumed. The guidance received so far does not set out a confirmed transition process for early-access patients.
Ask your treating neurologist and the Beaumont team how the arrangements apply to you, whether any application or additional assessments are needed, and how continuity of treatment would be managed should your funding arrangements change.
Questions about your existing treatment should continue to be discussed with the team responsible for your care.
What if you attend another hospital, or have not seen a neurologist recently?
Include your current consultant and hospital in your enquiry. Where you are not currently linked with a neurology service, explain this and provide your GP’s details. Beaumont’s advice welcomes enquiries from both existing and new patients.
Ask whether a formal referral is required from your GP or existing neurologist, and how any appointments, testing and assessments should be coordinated. Making contact is the first step towards clarifying the appropriate route for your circumstances.
Will treatment begin immediately?
A reimbursement date is not a guaranteed treatment start date for an individual patient. Clinical assessment, supporting information and an individual reimbursement application remain part of the process.
Beaumont has also advised that its trained physiotherapy capacity is currently limited. This may affect how quickly the required assessments can be completed. We recognise that further waiting can be difficult, particularly after such a long campaign for adult access.
Our priority is to help ensure that people know how to begin the process and that avoidable administrative barriers do not stand in their way.
How SMA Ireland can help
SMA Ireland’s role is to provide information, help people understand the next steps and advocate for access. Decisions about clinical suitability and reimbursement remain with the treating clinicians and the HSE.
For support with understanding how to proceed, contact info@smaireland.com separately.
Please do not copy SMA Ireland on emails containing personal medical information unless you specifically wish to request our support. Please also avoid posting medical records or personal details in website comments or on social media.
We thank the adults with SMA who shared their experiences, Muscular Dystrophy Ireland, the clinicians and everyone whose advocacy helped bring adult access to this point.
This development is a reason for hope. The next task is to turn that progress into a clear, workable route to assessment and treatment for those who are eligible.
For adults wishing to be considered, the practical next step is to contact the Beaumont Neuromuscular Service using the details above.
This article provides information about accessing the pathway. It does not determine individual eligibility or replace advice from your treating clinical team.
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