Funnily enough, Tuesday is also my 30th birthday.<\/p>\n
Instead of making any special plans to go out and celebrate, I spent it waiting anxiously for any word on the decision, fearing the worst.<\/p>\n
To say I was surprised is truly an understatement\u00a0\u2014 I\u2019ve spent months preparing myself for bad news.<\/p>\n
When I was in college, I became fixated on FA research and the advancements doctors were making in the area. I obsessively followed the development of treatments in the US, and I dreamed of the day that they would become publicly available.<\/p>\n
I first read about Skyclarys back then, and I\u2019ve followed its progress from clinical trials to US market authorisation in 2023.<\/p>\n
I rejoiced, comfortable in the knowledge that a treatment to slow the progression of FA was on its way. However, I grew more anxious in the days after this.<\/p>\n
I was familiar with Ireland\u2019s bad track record with reimbursing drugs for rare diseases, and I knew Ireland\u2019s FA community had a fight on their hands.<\/p>\n
I waited anxiously for Skyclarys to make its way to Ireland.<\/p>\n
After being approved by the European Medicines Agency in February 2024, Biogen filed in August 2024 \u2014 over 750 days ago, at this point.<\/p>\n
Now, just a few years later, I am no longer able to live independently. I need help with small things like getting in and out of bed, making a cup of tea, tying my hair up.<\/p>\n
With access to Skyclarys, I now have hope that any future progression won\u2019t be quite as dramatic.<\/p>\n
Waiting for a decision these past few months has been awful. The constant debates about Ireland paying for Skyclarys have made my mental health spiral. Just last week, I started taking mood stabilisers again after years without needing them.<\/p>\n
As I followed these conversations, I could simultaneously hear stories about FA patients in other countries with access to Skyclarys, who were all experiencing huge benefits from the drug.<\/p>\n
One girl that I follow in the US reports experiencing less fatigue, more dexterity, and she has audibly clearer speech. I watched her with envy and hope.<\/p>\n
Although it\u2019s a celebratory time for other patients and me, I want to take a minute to look at the bigger picture.<\/p>\n
Ireland\u2019s system for reimbursing medicines for rare diseases is not fit for purpose.<\/p>\n
We\u2019ve seen campaigns like the one for Skyclarys happen over and over again: In the 2010s for Pembro, a drug used to treat rare forms of cancer, and in 2017 for Orkambi, to treat cystic fibrosis.<\/p>\n
The system is not protecting some of Ireland\u2019s most vulnerable people.<\/p>\n
And the Government\u2019s reasoning is always the same. It always comes down to money.<\/p>\n
And then they\u2019ll announce tens of millions for greyhound and horse racing, bike sheds, and printers. This is always money for something, just not for the people who need it. Their priorities are ridiculous.<\/p>\n
I dread to think which rare disease group will have to take to the streets to demonstrate for healthcare.<\/p>\n
This cannot happen again.<\/p>\n
Campaigning and waiting for a decision these past few months has been exhausting, but I\u2019m just incredibly relieved that a positive result came out of it all. I don\u2019t know what I would have done with myself if the decision was negative.<\/p>\n
![\"Emily](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/08\/5206036_12_articleinlinemobile_Friedreich_27s_20Ataxia_20campaign34.jpg\" "\\"Emily")
Emily Felix, Emma O\u2019Shea, and Niamh N\u00ed Hoireabhaird join the campaign to protest in Dublin to push for Skyclarys approval in Ireland. <\/p>\n