Responses to parliamentary questions
Question from Deputy John Lahart - PQ 36471-26
Deputy Lahart asked about the price negotiations for Skyclarys. Read the HSE response.
From: Communications and Public Affairs
Published: May 2026
Updated: June 2026
Documents
Summary
To ask the Minister for Health the specific steps being taken to ensure the HSE considers the "time-critical" nature of Friederichs Ataxia during the current price negotiations for Skyclarys; the way in which the commitments in the National Rare Disease Strategy 2025-2030 and the 2026 IPHA Framework Agreement (which aims for a 180-day decision timeline) are being applied to this specific case, to prevent further delays in addressing the ‘unmet need’.
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