The HSE Drugs Group will meet later today to give further consideration on whether to cover the drug Skyclarys, which can slow the progression of Friedreich’s Ataxia.
Around 200 people are living with the rare neurological disease here and have been campaigning for the drug to be made available by the HSE.
It is the first treatment for Friedreich’s Ataxia.
The HSE Drugs Group had initially recommended that Skyclarys not be covered, but today it will consider a report from the Rare Diseases Technology Review Group which supports the introduction of Skyclarys.
The final decision on the issue will be made when today’s HSE Drugs Group recommendation goes to a meeting of the HSE Senior Management Team on 25 August.
In making its decision on whether a drug should be available on the public system, the HSE Drugs Group considers reviews by the National Centre for Pharmaeconomics, patient group submissions and the outcome of commercial negotiations with relevant drug companies.
Last December, the National Centre for Pharmacoecnomics recommended against the HSE providing the drug as it was not seen as cost-effective.
At the current price, it would cost around €280,000 per patient per year, with a five-year budget impact of around €130m.
Watch: RTÉ’s Health Correspondent Fergal Bowers has the latest from the Dept of Health
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Rare diseases is a key health policy area during Ireland’s Presidency of the EU and so the topic is likely to attract particular attention.
Campaigners recently met with Minister for Health Jennifer Carroll MacNeill and have been lobbying politicians.
The drug is made by Biogen which has said it continues to engage with the HSE.
Skyclarys has been approved by the European Medicines Agency and the FDA in the US.
Earlier this month, the High Court gave Emily Felix, one woman with Friedreich’s Ataxia, permission to challenge what she said is the HSE delay on granting her access to the drug.