Friedreich’s ataxia is a progressive and degenerative disease for which there is no cure. Until recently there was no effective treatment either but now there is. It is called Skyclarys and it is available elsewhere in Europe but not here in Ireland. People with Friedreich’s ataxia have been waiting since 1 August 2024, 677 days, for the HSE to make this drug available. Why is Skyclarys not on the agenda for the HSE drugs group meeting that will happen tomorrow? Further delay is intolerable and cruel because there is no pause in this disease. Every day lost has consequences. Emily Felix told me that delay so far has cost her permanent damage - loss of swallow, loss of speech - and she is not prepared to suffer any more. I would like the Taoiseach to tell Emily Felix, Oisín Pollard, Jodie Donovan, Emily Kerrigan and Niamh Herbert, all in the Public Gallery, all waiting and waiting for this drug.

Sentiment score: -0.19

I would like the Taoiseach confirm for them that the HSE drugs group will deal with this matter-----

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-----and that these fine people will have access to the treatment they need.

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No, 21 May.

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On 21 May.

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I have documentation.

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The Taoiseach cannot mislead the House.

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They are here-----

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No.

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No.

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Why not?

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The Taoiseach needs to give them a date.

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They are in the Public Gallery.

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I am not playing games.

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They want an answer.

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