Kilkenny TD blasts HSE for revealing price of ‘wonder’ drug during negotiations

KILKENNY TD Bobby Aylward has hit out at health authorities for publicly revealing the cost of a new ‘wonder’ drug that would allow children born with severe muscle weakness to walk again.

Last week the Health Services Executive (HSE) informed patients and the drug company Biogen that it would not sanction the use of the drug Spinraza, the only available treatment for spinal muscular atrophy (SMA), because it was too expensive.

The decision was met with dismay from parents of children who suffer from SMA in Kilkenny and around the country. The parents of one affected Kilkenny youngster, Isaac Brennan, were among those who were told by the HSE that it is not in a position to fund Spiranza.

SMA Ireland, which lobbies on behalf of patients with the disease, is planning to protest outside Leinster House this afternoon and present a petition signed by over 90,000 people calling for the Government to provide Spinraza.

The HSE said it would cost about €600,000 in the first year to treat each of the 25 Irish children suffering with the disease and €380,000 a year thereafter “with an estimated budget impact in excess of €20 million over a five-year period”.

Deputy Aylward, who has publicly backed calls for the drug to be made available to Irish parents, criticised the HSE for commenting publicly on the cost of the drug while negotiations are ongoing.

He told KilkennyNow.ie: “It is highly irresponsible of the HSE to publicly comment on the pricing of this drug at such a sensitive point of the negotiations.

“It is also deeply disrespectful to the families of the affected children concerned, who are desperately hoping for good news in the coming weeks.”

Spinraza has been approved in 25 countries around Europe. Ireland is just the third country to reject the drug on price grounds.