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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

SMA treatment access

Summary

Brian Stanley seeks access to life-changing spinal muscular atrophy treatments for people excluded by an age limit. The Health Minister says the HSE manages drug reimbursement and will examine the case.

Yesterday, we had a well-attended presentation from SMA Ireland in the audiovisual room. Its priority is to secure access to the life-changing treatments and medicines for people with spinal muscular atrophy issues. We were told this is caused due to a loss of motor neuron nerve cells. It is an important issue. SMA can have life-limiting effects. It can cause difficulty for swallowing, breathing, walking, etc., and some of these people are confined to wheelchairs. The HSE approved three treatments a number of years ago, but it imposed an age limit. Those who were aged over 18 at the time were excluded.

However, those aged 14, 15 or 16 at the time got the treatment. Some of them may be over 18 years of age now - they could be 20, 22 or 23 - and still be getting the treatment. Other EU countries do not have that restriction. England does not. Only approximately 20 adults in the State need this.

Comment on this
Verona Murphy An Ceann Comhairle Independent

The Deputy has gone way over time.

Comment on this

It involves a small amount of money and requires a ministerial directive from the Minister, Deputy Carroll MacNeill, who was sitting beside the Taoiseach. Maybe she will address the matter.

Comment on this

I was aware of the briefing and was sorry I was not able to attend yesterday on an otherwise busy day. As the Deputy is aware, the process for processing, authorising and reimbursing drugs is managed by the HSE, which considers all of the different factors involved, including the European position and the effectiveness and broader reach of a drug at a given time. I will examine the case raised by the Deputy. I know the circumstances he has mentioned and perhaps we can speak about the matter again more directly.

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