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Woman says time running out for her as HSE delays decision on Friedreich’s ataxia drug
🇮🇪 Ireland /Health & Science

Woman says time running out for her as HSE delays decision on Friedreich’s ataxia drug

From Irish Times · () English

Summarized and contextualized by DistantNews.

At a glance

News Sources not specified In the courts
  • A woman with Friedreich's ataxia (FA) is suing the Health Service Executive (HSE) in Ireland over delays in funding a drug that could slow her condition's progression.
  • Emily Felix learned through social media that the HSE had delayed its decision on omaveloxolone (Skyclarys), which was approved in the US and Europe.
  • The National Centre for Pharmacoeconomics previously assessed the drug as not cost-effective, estimating an annual cost of €280,000 per patient.

Emily Felix, a 28-year-old diagnosed with the progressive neuromuscular condition Friedreich's ataxia (FA), is taking legal action against Ireland's Health Service Executive (HSE). Felix, one of fewer than 200 people in Ireland with FA, learned via social media that the HSE had postponed a decision on funding omaveloxolone, branded as Skyclarys, a drug that could significantly slow the disease's progression.

It’s probably the worst part of it. It’s so insulting. We’re finding out this information at the same time the rest of the public is finding it out.

— Emily FelixEmily Felix described her distress at learning about the HSE's decision delay regarding the drug funding through social media rather than official channels.

Omaveloxolone received approval in the United States in February 2023 and in Europe a year later. While not a cure, Felix's family states the drug can reduce FA's progression by up to 55 percent. Despite its European approval, the drug remains inaccessible in Ireland due to cost concerns.

Last December, the National Centre for Pharmacoeconomics (NCPE) issued an assessment deeming Skyclarys not cost-effective for reimbursement by the HSE, estimating an annual cost of approximately €280,000 per patient. Subsequently, on July 14th, the HSE Drugs Group did not recommend the drug for reimbursement and referred the application to the Rare Diseases Technology Review Committee (RDTRC) for further input.

There’s going to be no one speaking about this for two months. There’s no pressure at all. We can’t do anything . . . it’s disgraceful.

— Emily FelixFelix expressed frustration over the timing of the delay, coinciding with the Dáil recess, which she believes will stall any potential progress for two months.

Felix is seeking a High Court order to compel the HSE and the Minister for Health to finalize their decision on the drug's approval, reimbursement, and funding. She and approximately 100 supporters, including family and friends, attended Leinster House on July 14th to witness the HSE Drugs Group's decision, only to discover the delay through social media. Felix described the experience as "insulting" and expressed despair over the lack of official communication and the two-month Dáil recess, which she believes will halt any progress on the issue.

we needed that to be a yes

— Emily FelixFelix conveyed the group's strong desire for a positive decision on the drug funding when they gathered at Leinster House.
DistantNews Editorial

Originally published by Irish Times. Summarized and contextualized by our editorial team with added local perspective. Read our editorial standards.

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