Fianna Fáil letter challenges HSE stance on rare disease drug
The vast majority of members of the Fianna Fáil parliamentary party have signed a letter raising "serious concerns" about a HSE group recommendation to refuse funding for Skyclarys.
A letter signed by 48 Fianna Fáil T.D.s, senators and MEPs has challenged the Health Service Executive's (HSE) decision not to fund Skyclarys, a drug used to treat Friedreich's Ataxia. The letter, addressed to HSE leadership, criticizes the reimbursement system for new drugs as broken and unfit for purpose. The HSE's Drugs Group has recommended against reimbursing Skyclarys, citing cost concerns, despite a positive report from the National Centre for Pharmacoeconomics and the Rare Diseases Technology Review Committee.
Opposition parties Sinn Féin and Aontú have joined the Fianna Fáil backbenchers in calling for urgent action to fund the drug, which has been shown to slow disease progression by up to 50% in some patients.
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