• Whatever the make-up of Mayo County Council following tomorrow's local elections, all elected councillors should make a united call on Government to approve a life-changing drug for children suffering from SMA - Spinal Muscular Atrophy.

    That's according to Paul Lawless, Aontú local election candidate in the Claremorris electoral area.

    Mr Lawless wants to see all local authority members putting pressure on Government to approve Spinraza for children across the country suffering from SMA -including two children in south Mayo......

  • 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.

  • The HSE has today approved the drug Spinraza for children with SMA -Spinal Muscular Atrophy.

    Following a long campaign to have the drug approved, the HSE has given the green light this afternoon.

    Two children from the south Mayo region - Grace O'Malley and Cillian Mearns - are among those suffering with SMA, and the decision to grant funding for the life-changing drug has  received cross-party welcome by local politicians.



  • With just days to go to the Budget, the families of children with SMA - Spinal Muscular Atrophy - are making a final plea to Government to sanction the drug Spinraza, which they believe will halt the progression of the rare genetic condition.

     SMA affects 25 families nationally, including two families in Co Mayo.

    It's estimated it would cost in the region of €3 million per year to provide the drug for these 25 children, but to date, the Government has not sanctioned its approval.

    Health Minister Simon Harris is waiting for a recommendation from the HSE, but the families involved say a decision is needed now, as the childrens' conditions are getting progressively worse.



  • A Mayo Fianna Fail TD has expressed her disappointment that despite the approval of the Spinraza drug last June for children with SMA only three of the 25 waiting have received access to this drug.

    Lisa Chambers said when she questioned the Health Minister why there was a delay in rolling out this drug, he responded by saying he wasn’t aware at the time of the announcement that a specialised team would be required.

    Deputy Chambers she doesn’t buy this, as for rare drugs and rare diseases you will always need a specialised team to administer the drug.

    There will be a more detailed Dail debate on this matter today and the Castlebar based deputy says she will be raising a number of questions with Minister Simon Harris.

  • A Mayo Senator says it's very disappointing that the Government has not yet decided whether to provide the Spinraza drug for children suffering from SMA - Spinal Muscular Atrophy.

    A decision was expected today, but that has now been deferred, according to Sinn Fein Senator Rose Conway-Walsh, who says it's bitterly disappointing for the families of two children in south Mayo with this condition.

    The families of Grace O'Malley in Hollymount and Cillian Mearns from Cloghans are left waiting for a decision on this life-changing drug, which is available in 21 other countries in Europe, and Senator Conway-Walsh is urging people to highlight this campaign on the doorsteps ahead of next week's local and European elections....

  • It's beyond belief that children suffering from SMA - Spinal Muscular Atrophy - are still awaiting treatment, four months after the drug Spinraza was approved in Ireland.

    That's according to Mayo Sinn Fein Senator Rose Conway-Walsh, who says the families of two Mayo children  -Grace O'Malley from Hollymount and Cillian Mearns from Shrule - are still waiting for the treatment to be administered, while the HSE is saying it doesn't have to hospital beds or staff needed.

    There was widespread welcome last June when Spinraza was approved by the HSE, but Senator Conway-Walsh says it's now imperative that the Minister for Health announces a start date for its administration to the children involved.

    She's raising the matter during the Commencement Notices in the Seanad this morning, and is hoping Minister Simon Harris will come into the House to give an update on this issue....

  • Today's decision by the NHS in England to approve the drug Spinraza for patients with SMA - Spinal Muscular Atrophy - will put further pressure on the Irish Government to approve the drug here.

    That's according to Mayo Fianna Fail TD Lisa Chambers.

    The NHS has reached agreement with the drug manufacturers Biogen to fund the treatment.

    In Ireland, a decision was expected yesterday in relation to Spinraza, but Mayo Sinn Fein Senator Rose Conway-Walsh told Midwest News that the decision has been delayed yet again, and said this was unfair on the two Mayo families affected.

    Deputy Lisa Chambers told Midwest News that the Irish Government is dragging its feet on this decision, but said today's news from England will put further pressure on the HSE and Health Minister Simon Harris to approve the drug here.

    Senator Conway-Walsh is also raising the matter in the Seanad again today and says the Irish Government must act quickly so children can access this life-changing treatment.