Friedreich’s Ataxia: ‘It’s not fair’ says Shanice
Friedreich’s Ataxia has been in the news headlines lately as those who live with the rare inherited neurodegenerative disorder have been out on the streets fighting for the funding of a life-changing drug called Skyclarys.
The drug was approved for use by the US in 2023 for use across the EU shortly after – so far, only 11 countries have made the decision to fully reimburse the cost of the drug, not including Ireland.
Shanice O’Reilly, a Mullingar woman who lives with Friedreich’s Ataxia, has been among the many, as she puts it “FA’ers”, who have been calling on the government and the HSE to fund the €280,000 per year cost of the drug.
Two weeks, ago the HSE recommended that Skyclarys not be reimbursed; on Thursday, activists and TDs met to discuss why the drug was vital for people living with Friedreich’s Ataxia. On Sunday, the activists took to the streets of Dublin to protest the government refusal to provide compensation for Skyclarys.
Shanice was present for both. “At the protest, everyone was kind of cheerful, it wasn’t emotional or anything, because on Thursday we had a meeting up in Dublin and that was an emotional day.
“It took place straight across from the Dáil, in Buswells Hotel, so a few TDs were there and Michael Collins, TD, organised it. All the FA’ers, their families and friends were there.
“A few media were there, head doctors and scientists were talking about the drug and the benefits. They were from Canada, and they were explaining their experiences.
“About a month ago, there was a meeting with the rare disease and the drug committee and they recommended that Skyclarys be approved, based on evidence and case studies. On Thursday, the TDs were talking about it and the scientists and the head doctors, and a few of the members spoke, giving their stories – so it was really emotional.”
According to Shanice, the data used for the HSE’s recommendation was out of date. Today, Tuesday August 25, HSE senior management will make a final decision on Skyclarys.
“I’m nervous to be honest,” admitted Shanice. “Not even for me really, but the others are panicking. A lot of them are wondering what we are going to do, and some are thinking about moving abroad to countries that do reimburse it.
“Some have even had suicidal thoughts so we’re trying to keep them upbeat.
“I just hope it’s a good answer, I really do.”
Shanice explains that the stress over the last few weeks has been affecting her. “It’s draining our health but then we’re having to campaign and it’s just even more intense. On Thursday I got up at five o’clock and left my house at half five because I had to work in Dublin.
“After I left the office, I went straight to the meeting. It’s just draining. I want it to be over now.
“There’s a lot more pressure on my symptoms than usual. Last week alone I had three falls and normally I don’t, I haven’t fallen in months.”
Asked what her reaction to the original recommendation from the HSE not to reimburse the drug, Shanice had two words. “Shocked and disappointed.
“Shock because there are 11 other EU countries who have now approved it – Germany is one of them, and to be honest, I thought once Germany did it, Ireland would follow.
“And disappointment in the government because it’s not fair.”