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Woman Granted Permission to Challenge HSE Delay on Rare Disease Drug
🇮🇪 Ireland /Health & Science

Woman Granted Permission to Challenge HSE Delay on Rare Disease Drug

From RTÉ News · () English

Translated from English, summarized and contextualized by DistantNews.

At a glance

News Named sources In the courts
  • A 28-year-old woman with a rare neurological disease has received High Court permission to challenge the HSE's delay in providing access to a new drug.
  • Emily Felix is seeking reimbursement for Skyclarys, the first treatment for Friedreich's Ataxia, a condition affecting about 200 people in Ireland.
  • Her solicitors argue the HSE's delay is unreasonable given the disease's progressive nature and that the agency prioritized price bargaining over a timely decision.

A 28-year-old woman suffering from a rare neurological degenerative disease has been granted permission by the High Court to challenge the Health Service Executive's (HSE) alleged unreasonable delay in providing her access to a crucial new drug. Emily Felix is seeking a judicial review of the HSE's decisions regarding her access to Skyclarys, the first available treatment for Friedreich's Ataxia.

every month and every year

— Emily FelixDescribing the progression of her Friedreich's Ataxia in February.

Friedreich's Ataxia affects approximately 200 individuals in Ireland. Ms. Felix, a trainee solicitor from County Kilkenny, has been experiencing deteriorating mobility and neurological function, including speech impairment. She is using a voice-bank to preserve her voice's sound. Her solicitors contend that Skyclarys "offers a treatment which could stop the progression of the condition."

offers a treatment which could stop the progression of the condition

— Emily Felix's solicitorsArguing for the importance of Skyclarys.

According to Ms. Felix's legal team, the HSE has failed to make a decision on approving the drug within a reasonable timeframe, with the application under review since August 1, 2024. They deem this delay "unreasonable" due to the "progressive and irreversible" nature of the disease. The court is being asked to order the HSE to make a lawful and reasoned decision and to quash a July decision denying Ms. Felix access through the Treatment Abroad Scheme.

unreasonable

— Emily Felix's solicitorsDescribing the HSE's delay in deciding on drug approval.

Ms. Felix's solicitors claim the HSE has prioritized "price bargaining" and has not provided a final decision, a definitive timeline, or any interim arrangements. They argue that the lack of a decision infringes upon her constitutional rights, including the right to life. Mr. Justice Cian Ferriter acknowledged the "difficult position" and urgency of Ms. Felix's case, granting leave for the matter to be mentioned on September 10.

difficult position

— Mr. Justice Cian FerriterAcknowledging Emily Felix's situation.
DistantNews Editorial

Originally published by RTÉ News in English. Translated, summarized, and contextualized by our editorial team with added local perspective. Read our editorial standards.

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