Fianna Fáil Deputy John McGuinness has warned that direct political intervention will be needed to break the deadlock over state funding for a life-altering Friedreich’s ataxia medication.
Despite an intense public campaign by patients and families, the HSE initially refused to cover the drug’s costs and the decision has now escalated to senior HSE management ahead of an August 25 deadline.
Families and supporters are holding a demonstration in Dublin today (Sunday) from 12pm.
Deputy McGuinness says he has personal experience of the condition and the medication is life altering.
“Well, the reimbursement that we’re talking about, and you have to know what Friedreich’s ataxia is all about. My own nephew, David MacInerney, suffers from it. And I have to say, his life has been completely devastated by that disease, and he’s looking for the drug to be approved so that it can at least extend, you know, his time at each stage of the effect of the disease itself.” said John.
