AN estimated 400 people attended a meeting in Kealkill on Tuesday in support of local woman Emma O’Shea in her fight for Skyclarys to be funded by the HSE.

Emma (26) and 200 others are campaigning for the life-changing drug which could significantly slow the progression of her Friedreich’s Ataxia (FA) to be made available.

A decision by the HSE last week not to fund the treatment prompted a huge backlash with many Fianna Fáil TDs who are not in a ministerial position putting their objection in writing.

Independent Ireland leader Michael Collins TD held a meeting with Emma in Schull last week and attended Tuesday’s gathering with was held at Kealkill NS where Emma went to school.

He said: ‘Thank you to the people of Kealkill who turned out to support Emma in her fight for Skyclarys. Next stop is Thursday in Buswells for an important meeting in Dublin.’

A final decision on Skyclarys is due on August 25th and thousands of campaigners are expected to travel to Dublin for Thursday’s protest.

Emma made a direct appeal to the Taoiseach, the Tánaiste and the Minister for Health Jennifer Carroll McNeill to intervene.

‘You are the only people who can help us,’ she said. ‘We need this drug, it has been proven scientifically to work. I and the 200 others with Friedreich’s Ataxia are asking for you to intervene, we are losing time.’

In a recent interview with this newspaper Emma told how her older brother Timmy sadly died of Friedreich’s Ataxia in 2016 at the age of 29.

The genetic disease affects mobility, speech, coordination and heart health. In 2024 Skyclarys was approved for all 27 EU member states by the European Medicines Agency. To date just 12 countries have reimbursed the drug.

Michael Collins, who has been steadfast in his support for the campaign, has called on the Government to ‘cut the bull***’. He demanded an immediate intervention to overturn last week’s decision, warning that those living with Friedreich’s Ataxia cannot afford further delays.

He said the decision by the HSE to refuse funding for the treatment must be challenged and that the Oireachtas Health Committee should be reconvened urgently to examine the decision.

Deputy Collins said: ‘Cut the bull****. This is life and death. There is no more time for political games, committees being set up and responsibility being passed from one person to another.

‘Patients like Emma are living with a devastating condition and every day matters. This isn’t something that can be put off for four weeks or four months. The impact is happening right now.

‘Emma has been absolutely clear that Skyclarys will not cure her. But it could help slow the progression of this terrible disease and give her and other patients more time and a better quality of life.’

Deputy Collins wrote to chair of the Oireachtas Health Committee Pádraig Rice asking him to reconvene the committee, but has not received a response. He said the Government must demonstrate that the health system puts patients ahead of bureaucracy and financial considerations.

‘There is an opportunity on August 25th to put this right,’ he said. ‘I am calling on every TD and senator who has an interest in the welfare of these patients to support the reconvening of the committee and demand answers.

‘For Emma and for so many others, this isn’t politics. This is their life.’