Listen Back: Local FA patient calls for ’more transparency’ with Skyclarys roll out | NorthernSound

The HSE is being urged to put a plan in place to roll out access to Skyclarys for people living with Friedreich’s Ataxia.

The HSE is being urged to put a plan in place to roll out access to Skyclarys for people living with Friedreich's Ataxia.

There are approximately 200 people in Ireland suffering from the rare hereditary disease, for which there is no cure.

Friedreich’s Ataxia, a rare inherited degenerative neurological condition affecting mobility, co-ordination, speech, vision, hearing and heart health.

The HSE has agreed to fund the drug from October 1st but despite this, patients say they still have no clear information on when they can expect their treatment to begin.

22-year-old Aoife Gavan from Castleshane in Co Monaghan was diagnosed with Friedreich's Ataxia at the age of just 13.

Co Monaghan Senator Robbie Gallagher believes "lessons must be learnt" at Government level following the HSE's decision to fund Skyclarys for Friedreich's ataxia patients.

Senator Robbie Gallagher said the long process taken to reach this decision was a "painful journey" for campaigners.

The Fianna Fail rep believes the Government must reflect back on how things could have been done better.

With Skyclarys already available in 11 other EU countries, Senator Gallagher says going forward, negotiations should be done at EU level with drug companies on behalf of all member states.

He believes this would put all countries in a much better position:

Skyclarys was approved last month after a lengthy campaign by patients like Aoife.

While the Skyclarys drug is not a cure for FA, it will significantly improve Aoife’s quality of life and slow down symptoms.

While time is of the essence, Aoife shared her frustration that her health has significantly declined since the start of this campaign with her symptoms progressing every day.

The local student said it was "unacceptable" that campaigners like herself had to fight as much as they did.

She said "shame on the Government for making sick people fight that hard for access to basic medication."