North Longford woman urges HSE to fund life-changing drug for rare disease

North Longford woman Kiara Lynch recently met with local TD Micheál Carrigy to discuss her campaign calling on the HSE to fund life-changing medication to treat Friedreich’s ataxia (FA), a rare, progressive neurodegenerative disease.

The 42 year-old was diagnosed with the rare, progressive neurodegenerative disease 28 years ago and since then she has been battling ‘the relentless progression’ affecting all of her abilities.

Kiara, who has been using a manual wheelchair since she was 17, has ‘cardiac issues, lung issues, bladder issues, pressure sores, and constant pain in my neck and back’.

New drug treatment Skyclarys or omaveloxolone, the first treatment in the world for FA, was first approved for use in Europe in 2024 when Biogen Idec (Ireland) Limited, formally requested the HSE to fund the medication through the public health system.

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The HSE has the authority to approve Skyclarys, but it has not yet done so, and the application remains under active consideration.

There was a setback when the National Centre for Pharmacoeconomics (NCPE), which provides independent HSE assessments on whether new drugs should be provided to the public, referred to the ‘cost-effectiveness’ of Skyclarys at up to €300,000 per patient.

Kiara said her and sister Caitriona met Longford TD Micheál Carrigy at her home on Thursday, April 9.

“He discussed the issue of the availability of Skyclarys in Ireland and what we could do to raise awareness of the issue, and what he could do for us in terms of advocating for it on our behalf.”

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Deputy Carrigy described Kiara as being ‘inspirational’ and having a supportive family and he said he would highlight the call for 200 FA sufferers to benefit from access to the treatment.

“There is now a drug out there that would slow down the progress of her illness, and of others and I think they are entitled to that, and that’s where the State needs to step in to support Kiara and others, I think it should be a priority.

“Kiara has battled in difficult circumstances, always using her voice, to advocate not just for herself, but for others in a similar position.”

Deputy Carrigy said, ‘unfortunately you have to battle with the HSE to get these things funded’ and he referred to Longford woman Jillian McNulty’s long and successful campaign and the benefits after the drug Orkambi was approved for CF sufferers.

“We’ve had another advocate Brona Noonan and even the simple thing of getting the heel-prick test for SMA (spinal muscular atrophy) and now that is being brought in and it’s a battle all the time.

“I can’t make promises and I don’t make promises. But I will continue to highlight it and support it and make sure that it’s given the highest consideration,” he concluded.

Minister for Health said this week that negotiations between the HSE and and the marketing authorisation holder, Biogen (Idec) Ireland Limited are ‘ongoing’.

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