Friedreich’s ataxia patients worried if they will get drug treatment in 'timely fashion'

Craig Coady with his sons Paudie and Rory. Rory died from Friedreich's ataxia last year. Craig said 'people are getting anxious' about the timeline for their treatment.

A clear timeline for when a new drug for Friedreich’s ataxia will reach patients is urgently needed with one Cork father fearing it could take many months.

It emerged this week the HSE expects to have reimbursement arrangements in place by October 1 for Skyclarys. However, the 200 patients affected do not know when it will reach them.

Craig Coady lost his son Rory to the disease last year with his anniversary Mass held on Friday. He campaigned to have Skyclarys made available to sufferers, including his other son Paudie.

“People are getting anxious,” he said on Friday. “They have very little information.” 

There is only one specialist Friedreich’s ataxia centre located at Tallaght University Hospital. Mr Coady said it is impractical to expect this centre to see all 200 patients in a short time.

Each patient will need bloods and other tests before taking the drug with strict protocols in place.

“Speaking to patients with Friedreich’s ataxia this week, they say patients who have appointments to see a neurologist are in a good place and hopefully will get the drug as soon as possible,” he said.

“But there’s a lot of people who don’t have appointments and it’s a big worry for them whether they will get the drug in a timely fashion.” 

His son Paudie has an appointment next month, but he does not know if this is a regular check-up or the start of Skyclarys tests.

“Nobody is sure will the drug come to Cork,” he said.

“We need more information. At the moment there is only one FA centre. Are they going to roll Skyclarys out to Cork or other hospitals or will it be just Tallaght hospital?” 

He says he understands  that Tallaght has the most patients and "it could take over two years for all patients to get the drug". 

However, he said this is only an estimate with other people predicting everyone could get it by December this year. The Ataxia Foundation Ireland has welcomed the HSE’s plans.

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“The HSE has confirmed that the medicine will be prescribed under the supervision of specialists experienced in treating Friedreich’s ataxia, with prescriptions processed through the HSE High Tech Hub,” a spokeswoman said.

She also called for “clear communications” for patients, their families and neurologists as well as more clarity on how neurologists and local services will work on this. 

The foundation also thanked supporters who helped patients reach this stage, including politicians. A public campaign this summer saw pharmaceutical company Biogen reduce its price in negotiations with the HSE over value for money.