I want to read an excerpt from an email I got today in relation to Skyclarys for people with Friedreich's ataxia: At 19 years old, I should be excited about my future. I should be looking forward to building a career, travelling, making memories with friends and planning the life I want to live. Instead, I wake up every day wondering what ability I will lose next. My future is overshadowed by fear, knowing that my condition will continue to deteriorate while a treatment exists that could slow the decline. The Friedreich's ataxia community in Ireland has been fighting for reimbursement of Skyclarys for a long time. We have shared our stories, met with politicians, engaged with decision makers and done everything asked of us. The postponement of a decision this week while expert opinion was requested by the committee was incredibly disappointing. I do not know, after hundreds and hundreds of days of people waiting for a medication that they desperately need, how a committee that is paid to do a job still has not made a decision. If expert advice was needed before now, why was it not sought before now? In a country where we are so educated and have so much money, and in the EU, where other countries are already reimbursing for this drug, why does it take so long, and why do we have such an inhumane system for the reimbursement of these drugs in this country? That is what it is when you stand face to face with people and families experiencing this. What is the Government going to do to speed up the process and help the people who need help the most?

Sentiment score: 0.03