Brian Stanley urges access to SMA treatments for adults
Brian Stanley spoke about access to life-changing treatments for people with Spinal Muscular Atrophy (SMA), calling for the removal of an age-based restriction that prevents some adults from receiving approved medicines. He highlighted HSE decisions, comparative practice in other countries, and requested a ministerial directive to extend treatment access.
Brian Stanley opened by summarising a recent presentation on Spinal Muscular Atrophy in the AV room, emphasising the priority of securing access to life-changing treatments and medicines for people with SMA. He described SMA as caused by the loss of motor neuron nerve cells and noted the condition can be life-limiting, affecting swallowing, breathing and walking.
He noted that the HSE approved three treatments several years ago but applied an age limit that excluded people who were over 18 at the time of approval. Those who were under the cut-off received treatment and have continued to receive it as they age, while others over the age limit remain excluded.
Brian Stanley observed that other EU countries and England do not apply the same age restriction, pointing to a disparity in access. He raised the point that only a small number of adults in the State would require treatment under a change in policy, citing an estimate of about 20 adults.
He said that extending access would require a ministerial directive from the minister responsible, noting the change could be achieved with a relatively small amount of money. He pressed for direct engagement on the case and for ministerial action to address the exclusion.
A government representative responded that the HSE manages the process for authorising and reimbursing drugs and considers European positions, effectiveness and wider reach when making decisions. The ministerial representative said they would look at the specific case in particular and suggested following up directly with the deputy to discuss the circumstances further.
Presentation and priority
Brian Stanley opened by summarising a recent presentation on Spinal Muscular Atrophy in the AV room, emphasising the priority of securing access to life-changing treatments and medicines for people with SMA. He described SMA as caused by the loss of motor neuron nerve cells and noted the condition can be life-limiting, affecting swallowing, breathing and walking.
HSE approvals and age limit
He noted that the HSE approved three treatments several years ago but applied an age limit that excluded people who were over 18 at the time of approval. Those who were under the cut-off received treatment and have continued to receive it as they age, while others over the age limit remain excluded.
International comparisons
Brian Stanley observed that other EU countries and England do not apply the same age restriction, pointing to a disparity in access. He raised the point that only a small number of adults in the State would require treatment under a change in policy, citing an estimate of about 20 adults.
Request for ministerial directive
He said that extending access would require a ministerial directive from the minister responsible, noting the change could be achieved with a relatively small amount of money. He pressed for direct engagement on the case and for ministerial action to address the exclusion.
Government response and next steps
A government representative responded that the HSE manages the process for authorising and reimbursing drugs and considers European positions, effectiveness and wider reach when making decisions. The ministerial representative said they would look at the specific case in particular and suggested following up directly with the deputy to discuss the circumstances further.
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Transcript
Thanks, John Corley. Yesterday we had a presentation from Spinal Muscular Atrophy, SMA, in the AV room, and a well-attended presentation, and their priority is to secure access to life-changing treatments and medicines for people with Spinal Muscular Atrophy issues, and this caused, we were told, due to loss of motor neuron nerve cells, so it's a really important issue. SMA can have life-limiting effects, it causes difficulty for swallowing, breathing, walking, etc., and some of these people are confined to wheelchairs. The HSE did approve three treatments a number of years ago, but they imposed an age limit. Those who were over 18 at the time were excluded, but if you were 15 or 16 or 14 at the time or whatever, you got the treatment, and if you're over, you're obviously going over 18 now, you could be 20 or 22 or 23, you still continue getting it. Thank you, Deputy. Other EU countries don't have that restriction, and England doesn't. There are only about 20 adults that are needed in the state, T-Shok. You're way over time now, Deputy. A small amount of money. It requires a ministerial directive from Minister Carl MacNeill, who's sitting beside you, and maybe she's arrested. Thank you, Deputy. I was aware of the briefing, and I was sorry that I wasn't able to drop along yesterday on an otherwise busy day. As you're aware, the process for processing, authorising, and reimbursing drugs is one that is managed by the HSE, and it looks at all of the different factors involved, including the European position, including the effectiveness and the broader reach of the drug at a given time. I will look at that case in particular. I know the circumstances that you're raising, and perhaps we could speak about it again more directly. Thank you, Deputy. Thank you.