Drug company Biogen has called on the HSE to look again at the proposed pricing for the only available treatment for the rare but fatal muscle-wasting disease spinal muscular atrophy (SMA).That’s according to today’s Irish Times.

It comes after the HSE informed patients and the company at the end of last week it would not sanction use of the drug on grounds of price.

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”.

Two Mayo families were devastated with this news as 9 year old Grace O’Malley of Roundfort and 6 year old Cillian Mearns of Kilmaine both suffer from SMA.

The drug, Spinraza, is approved in 25 countries around Europe and Ireland becomes just the third country to reject the drug on price grounds. Estonia and the UK are the other two, although the NHS in Scotland has agreed to fund the drug for patients there.

The HSE said in a statement that a report from its drugs group noted “the limitations of the current evidence on clinical effectiveness, and the high price being charged by the pharmaceutical company.”

While it was “anxious to provide all possible support to this very vulnerable group of patients and those who care for them... reimbursement could not be approved at the price currently being charged”.

Biogen said that in terms of efficacy, the effectiveness of the drug had been supported by a randomised clinical trial with strong results.

The news comes as a blow to families that have actively lobbied for the drug’s funding since it was approved by the European Medicines Agency in May 2017.

SMA Ireland, which lobbies on behalf of patients with the disease, said in a Facebook post that the HSE had “denied access for Irish people with SMA to the only available treatment for their condition”.

It said the drug-approval process had reached an unjust conclusion, one “that amounts to a death sentence” for the patients affected.

SMA Ireland is planning a protest at Dáil Éireann on Thursday.

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