Natasha Newsome Drennan demands answers on Skyclarys delay
Natasha Newsome Drennan addressed Leinster House to demand urgent action after families living with Friedrich's ataxia endured nearly 700 days waiting for HSE reimbursement for the breakthrough drug Skyclarz. She criticised what she called administrative neglect by the HSE, highlighted delayed specialist clinics and pressed for immediate interim access and accountability from the Taoiseach.
Natasha Newsome Drennan detailed how paperwork for Skyclarys reimbursement was submitted ahead of the HSE deadline but was not opened until after the cut-off, excluding families from consideration. She described this as administrative neglect and questioned whether the HSE can simply ignore submitted evidence while patients deteriorate.
Drennan recounted meeting young adults with Friedreich's ataxia at Leinster House and spoke of families' anguish as conditions worsen. She raised the impact of delayed cardiac checks and clinic appointments - specialist visits recommended annually have been stretched to 18 months and pushed from August to October, increasing clinical risk for patients.
She demanded clarity on the next HSE drug-group meeting, asked whether affected families will be included, and urged the Taoiseach to correct a public record that she says added to the families' distress. Drennan called for immediate resources for combined ataxia clinics and for interim access to Skyclarys while reimbursement is resolved.
The speech frames the issue as both a health-service failing and a political responsibility, pressing for rapid administrative fixes and transparent answers. Drennan emphasised the human cost for parents and patients and argued that continued delay is unacceptable.
Drennan pressed ministers for dates and commitments in the chamber and asked whether alternative, interim access arrangements could be explored if full reimbursement cannot be introduced quickly. She concluded by reiterating that families deserve action now.
Administrative failure
Natasha Newsome Drennan detailed how paperwork for Skyclarys reimbursement was submitted ahead of the HSE deadline but was not opened until after the cut-off, excluding families from consideration. She described this as administrative neglect and questioned whether the HSE can simply ignore submitted evidence while patients deteriorate.
Clinical consequences
Drennan recounted meeting young adults with Friedreich's ataxia at Leinster House and spoke of families' anguish as conditions worsen. She raised the impact of delayed cardiac checks and clinic appointments - specialist visits recommended annually have been stretched to 18 months and pushed from August to October, increasing clinical risk for patients.
Calls for accountability
She demanded clarity on the next HSE drug-group meeting, asked whether affected families will be included, and urged the Taoiseach to correct a public record that she says added to the families' distress. Drennan called for immediate resources for combined ataxia clinics and for interim access to Skyclarys while reimbursement is resolved.
Political context and consequences
The speech frames the issue as both a health-service failing and a political responsibility, pressing for rapid administrative fixes and transparent answers. Drennan emphasised the human cost for parents and patients and argued that continued delay is unacceptable.
Next steps
Drennan pressed ministers for dates and commitments in the chamber and asked whether alternative, interim access arrangements could be explored if full reimbursement cannot be introduced quickly. She concluded by reiterating that families deserve action now.
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Transcript
Minister, I strongly welcome this debate on rare diseases. Only last week I had the privilege of welcoming young adults living with Friedrich's atraxia to Leinster House. Tragically, they are waiting, watching their conditions deteriorate rapidly, not due to the lack of medical progress but due to what I can only call as administrative neglect by the HSE. Skyclarz is a breakthrough drug for those over 16 with FA. It is widely used across European public health systems, yet it remains out of reach here. These families have now endured nearly 700 days of anguish waiting for the HSE to decide on the reimbursement. The paperwork was submitted ahead of the deadline for the last meeting. The families have proof, but what was the HSE's response? That while it was submitted on time, it wasn't opened until after the deadline and there was therefore excluded. Minister, what kind of underhand carry-on is this? Can the HSE simply shut their eyes and pretend they saw nothing? And then we had the Taoiseach stand up here last week and give a different date, adding insult to injury for families already at breaking point. There is no accountability on that side of the house. I've spoken to Emily's family throughout this week. They are devastated. Once again, they have been kicked in the teeth and kicked to the back of the queue. As a mother of four young lads, I find it crippling to see what these parents endure, watching their children's health decline while the HSE drags its feet. No parent should have to fight this hard for their child's treatment. Then, just this week, they got more bad news. The specialist clinic recommended annual visits, but due to resource shortages, they only see the patients every 18 months. This has now been pushed from August to October. Friedrich's ataxia places immense strain on the heart. Emily's cardiac check-up is now delayed far beyond clinical recommendations. That is simply not acceptable. We need adequate resources for these combined ataxia clinics immediately, and we need the Taoiseach to correct the Dole record for what he said last week and acknowledge the profound hurt he has caused those with FA and their families. They deserve better, they deserve action, and they deserve it now. When is the next HSE drug meeting group and will they be included on it? What they really want is, if Skycars can't be basically introduced fast enough, can there be an interim access that they can get it until it is, you know, what if it's true Europe or if there is another way anyway? Because every minute, as you know, it's debilitating for them.