HEALTH Minister Simon Harris must expedite the negotiations for the life-saving drug, Spinraza, so that Co Mayo children, Grace O’Malley from Hollymount and Cillian Mearns from Cloghans, can have a chance at some quality of life. That is according to Mayo Dáil Deputy Lisa Chambers (Fianna Fáil) who has dubbed the continued wait for a decision as ‘torture’ for the families involved.
Both children suffer from the muscle-deteriorating disease, Spinal Muscular Atrophy Type II and are part of a nationwide campaign for the HSE to approve the drug, which is available in 21 other countries throughout Europe.
Speaking last week, Ms Chambers said: “Parents of Grace O’Malley and Cillian Mearns have to continue their excruciating wait for a decision on a life changing drug for their children, we had expected a decision on February 14 but it never came, the wait and the not knowing is torture for these families and we urgently need a decision from the HSE.”
“We understand negotiations are still ongoing and it was really disappointing to learn that Biogen, the company which manufactures Spinraza, has not actually lowered its price as had been widely rumoured. The cost is exceptionally high for the medication at €600,000 per child per annum and the HSE have refused to pay this amount.”
Urging Biogen to decrease the price of the drugs, she said: “Biogen, who pride themselves on being an ethical company, need to genuinely engage in the negotiations and bring their price down to a more reasonable level; and the HSE also need to genuinely engage and be willing to pay more than what they are offering because this is a drug we know works and is for children.
“If as a country we cannot look after the most vulnerable in our society, sick children, then we really need to take a look at what kind of a health service we have,” Ms Chambers added.
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