Cork dad may move to Latvia to get life-saving drug for surviving son

He already lost one son to Friedrich's ataxia — now Craig Coady says HSE drug group's Skyclarys deferral could force him to move to Latvia to get the drug for his other son

Craig Coady speaking on the Deirdre O’Shaughnessy Podcast. His son Rory died with Friedrich's ataxia, and Craig fears for the health of his other son, Paudie, who has the same condition. Picture Chani Anderson

A Cork father has said he may have to move his son to Latvia if the HSE does not approve the Skyclarys drug for Friedreich’s ataxia.

Craig Coady told the Irish Examiner that another delay to the drug’s authorisation could lead to further deterioration in his 16-year-old son Paudie’s condition, and he is now making alternative plans in case the drug approval is declined.

The HSE drugs group decided on Tuesday to defer its decision on Skyclarys for another three to four weeks, pending further research.

Friedreich’s ataxia is a rare genetic disorder that causes progressive damage to the nervous system and can lead to heart complications.

Mr Coady, who already lost his other son, 13-year-old Rory, to Friedreich’s ataxia last September, said that following a meeting with Taoiseach Micheál Martin in Cork in recent weeks, he had been “hopeful” that a positive decision would be made on the drug, but he is now much more pessimistic.

In the Dáil, Mr Martin said he understands that the drug approval is a “matter of urgency”.

Craig Coady lost his younger son Rory to Friedreich’s ataxia, and now fears for the health of Rory's older brother Paudie. Picture supplied by the Coady family

However, Mr Coady questioned why it has taken so long to get to this stage and why a decision has been deferred as the matter is urgent.

“[The Taoiseach] told me he would do everything he could to do to get this drug over the line,” he said.

“Is it a civil servant running this country? The buck stops with him at the end of the day.

If he really, really wanted this drug over the line, that drug would have been over the line on Tuesday.

“It is the Government that gives the HSE money.

“There is a lot of money wasted on silly things in this country. This is my son. I already lost a son. It is human beings, and it doesn’t wait.”

Paudie's condition deteriorating

Mr Coady said Paudie’s condition is continuing to deteriorate. His walking has slowed considerably and his chewing abilities have declined too.

He said he has been “patient enough”, is growing increasingly frustrated, and is “now planning plan B” to ensure Paudie can get Skyclarys.

“I have lost faith in this country,” he added.

“Plan B is Latvia. That would entail moving to Latvia. I have to. 

"If it’s going to be a no, which I feel it is going to be a no in a month’s time, I need to be ready to go.

“I have one foot after [Tuesday] into Plan B. I have been very patient.”

'Deferral could mean delay of months' 

In the Dáil, Sinn Féin’s health spokesman David Cullinane said deferring the decision could mean it would be “months” before the decision is actually made.

“It could mean losing the ability to walk, to speak clearly, swallow safely, or live independently,” he said.

The Taoiseach said he understood this was a “matter of urgency for those with the condition of Friedreich's Ataxia”.

He suggested that Biogen, the drug company behind Skyclarys, was “slow” in responding to the HSE.

Mr Martin said he understood that communication with patients needed to be improved, and there are “scientists and people with expert knowledge who meet to assess drugs”.

“They are not politicians. We have to protect that process too in the context of their assessment of the efficacy of drugs and so forth with regard to conditions,” he said.

“It is a serious and urgent situation for the families. Our hearts go out to them. It is a disease that progresses and has severe impacts on those with the condition.

“It has now been referred to the Rare Diseases Technology Review Committee, and the minister is taking steps to get that established as quickly as possible to assess this.”

• Louise Burne, Political Correspondent