'I don't have 12 weeks!'

Dáil recess delays approval of funding for life-enhancing medicine

“I don’t have 12 weeks, none of us have 12 weeks with this condition... I don’t even know if I’ll be walking by the end of summer.”

Those were the words of Monaghan woman, Aoife Gavan (21) from Castleshane, who was among a group of fifty protesters outside Leinster House last Tuesday, July 14, campaigning for the HSE to reimburse people with a rare neurodegenerative disorder for a special medication to alleviate the debilitating condition.

They gathered outside the Dáil as a meeting involving the HSE Drugs Group took place to consider the issue. The campaigners’ hopes were dashed, however, as no expert in the condition, Friedreich’s Ataxia, was available to address the virtual meeting, which ended without any decision being taken and as the Dáil rose for the Summer recess.

The debate concerns Skyclarys, an oral medication that costs €300,000 per patient per year, as a treatment for the disorder in those aged 16 years and over.

“I was told five times yesterday ‘Oh, we’ll pick this up at the end of summer’,” said a frustrated Aoife whose mobility is already significantly impacted by the progress of the ataxia.

“In the last week, it’s become so unsafe. I’m unable to walk comfortably around my own house anymore without fear of falling. It’s so scary. I don’t even know if I’ll be walking by the end of summer,” she said.

Aoife is one of an estimated 200 people nationwide who suffer with the heredity condition that primarily affects the nervous system and can lead to severe movement and co-ordination issues.

A fortnight ago, this newspaper covered Ms Gavan’s struggle to get the government to fund the drug that is vital to her maintaining quality of life ahead of last week’s crucial meeting.

The group of around fifty protestors outside the Dáil included 10-15 Friedreich’s Ataxia sufferers. Aoife’s dad Nigel and younger brother Jamie also joined the group. Jamie has not been tested for the condition because, thankfully, he is not exhibiting symptoms.

After protesting for a few hours and stating their case to TDs including Sinn Féin leader Mary Lou McDonald and Aontú leader, Peadar Tóibín, the campaigners were invited inside.

“I thought we were going to be informed of the decision inside,” Aoife said.

However, one of the campaigners, Craig Cody from Cork, who lost his son Rory (13) to the condition in 2025, was contacted by one of his local TDs to say that the meeting had taken place and no decision had been reached.

“That was unbelievably frustrating. It wasn’t a ‘yes’, it wasn’t a ‘no’,” said Aoife who hit out at the meeting organisers for not ensuring a specialist, such as a neurologist, was available to answer questions.

“It’s just unacceptable,” she fumed.

Aoife went on to explain why she and others in her situation felt so frustrated: “Basically, the research has been done. We know this drug works. We know there’s benefits from it. We’re not asking for a miracle. We’re asking them just to make the decision to fund it for us.”

The Castleshane native couldn’t help but compare Friedreich’s Ataxia sufferers’ fight for the funding of Skyclarys to the campaign of Muscular Dystrophy patients, who had their drug Givinostat greenlit for HSE reimbursement last month and available to qualifying patients the next week.

“They deserve it, I’m not criticising them,” she said, before going on to comment: “Muscular Dystrophy is very similar to Friedrich’s in a lot of ways. I just think the treatment towards us is so unjust and unfair,” said Aoife.

Skyclarys is approved for use in this country, but its cost places it out of reach for patients if the HSE does not approve reimbursement: “It’s not affordable. No one is going to be able to afford it, so our government need to reimburse it. It’s €300,000 a year, every year and you have to take it for the rest of your life,” Aoife explained.

“I actually almost threw up when I heard,” she said of her reaction to news from the meeting.

What if the decision is ultimately a no?

“I think I’m going to have to... get out of this country to get the healthcare that I need,” says Aoife, who has a degree in Psychology and English and is hoping to do a masters.

“It’s just heartbreaking to think I’d be leaving my entire life here, all my friends and family that I love. I was talking to other people yesterday, they were considering it.”

An an EU citizen, Aoife’s research suggests she should be able to access Skyclarys in another European country, which reimburses patients for the life enhancing medication.

“With this condition time is off the essence. I cannot stress that enough. I just don’t understand what it’s going to take for them [the government and the HSE] to realise how serious this condition is. So many people have died in the space of the 713 days now, since Skyclarys was approved here,” stressed Aoife.

After a long day protesting in the heat in Dublin, Aoife said she and her fellow campaigners feel like they have been “tossed to the sidelines”.

Before Aoife was diagnosed with Friedreich’s Ataxia aged 13, chronic fatigue was one of the first symptoms she experienced. Despite the meeting taking place on Zoom, Aoife still felt that the physical presence outside Leinster House was a good thing.

It is understood that the HSE leadership group, believed to have the final say, will meet within the next month to review the drug for reimbursement.

Aoife hopes they will be informed quickly of the decision to allow patients plan for their future..

“I’m kind of stuck in limbo now for 12 weeks, full of fear, my heart wouldn’t be 100% either. There’s a drug that could potentially save my life and keep me walking, and... it just feels like a slap in the face to me, to be quite honest.”

She added: “I’m not being dramatic, but I did have this conversation with my father yesterday. I didn’t want to worry him, but I feel my deterioration happening every morning when I get up. My father just looked at me and said: ‘I’m not blind Aoife’. It’s just heartbreaking.”

Aoife admits crying after breaking news from the meeting to her mum Marie and boyfriend Ryan. “I just cried all night. I think it was anger… frustration that our life isn’t even worth a proper meeting.”