Saturday 17 August 2019

HSE to fund Spinraza drug to treat rare muscle wasting disease

SMA sufferer Lauren Whelan (centre), from Loreto College, Crumlin, is surrounded by Spinraza activists at a protest outside the Dáil in 2018
Photo: Garrett White/Collins Photo Agency
SMA sufferer Lauren Whelan (centre), from Loreto College, Crumlin, is surrounded by Spinraza activists at a protest outside the Dáil in 2018 Photo: Garrett White/Collins Photo Agency
Eilish O'Regan

Eilish O'Regan

THE HSE is to offer to fund the drug Spinraza, the only treatment available for patients, mostly children, with the rare muscle-wasting disease spinal muscular atrophy (SMA), it emerged today.

The move which will be met with relief by parents and patients marks the end of a long campaign for access to the drug.

Health Minister Simon Harris announced the drug will be funded by the HSE and paid tribute to the campaigners.

“I know how long the journey has been for families and I am very glad they will now have access to the drug,” he added.

Health Minister Simon Harris. Photo: Aoife Moore/PA
Health Minister Simon Harris. Photo: Aoife Moore/PA

Spinraza, which is administered by spinal injection every four months, is currently the only approved treatment available for patients the rare muscle-wasting disease spinal muscular atrophy.

The often fatal condition affects fewer than 100 people in Ireland, among them 26 children.

The HSE said recently it would look again at the possibility of approving the drug after Biogen dropped its asking price.

Originally when the request for availability was turned down, the HSE said the drug would cost about €600,000 in the first year to treat each of the Irish children suffering with the disease and €380,000 a year.

Thereafter there would need to be an estimated cost in excess of €20 million over a five-year period.

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