Skyclarys approved: HSE to fund Friedreich’s ataxia drug for Irish patients

Decision confirmed ending long-running campaign

This comes after the HSE approved funding for Skyclarys, the drug used to treat Friedreich’s ataxia.

The decision was confirmed on Tuesday, ending a long-running campaign by Irish patients and their families.

The move reverses the direction set only weeks ago, when the HSE Drugs Group recommended against funding the treatment.

The senior management team said it “took account of a substantially improved financial offer made in recent days by the company Biogen to the HSE arising from intensive discussions."

They added that Biogen “has moved substantially from its previous position” and that the result was a “very different commercial offering to that which the HSE Drugs Group considered."

A HSE spokesperson said that, had the same terms been put in front of it, the senior management team would have reached the same conclusion as the Drugs Group and would not have proposed reimbursement.

It is not the only HSE funding decision this summer to have been forced into the open by a public campaign.

What the HSE said about Skyclarys

"On balance the SMT decided to approve reimbursement for Skyclarys based on the new commercial offering," said the HSE in a statement.

Skyclarys has been shown to help alleviate the effects of the neuromuscular disease, according to the HSE, although it also flagged the treatment’s limited efficacy.

The Journal reported that the approval followed intensive talks with Biogen in recent days, while RTÉ News confirmed the reimbursement decision earlier on Tuesday.