mounting on government leaders to intervene<\/a> and reverse a HSE decision recommending against funding the treatment, which costs \u20ac288,000 per patient per year.\u00a0<\/p>\nThe treatment was approved by the European Medicines Agency in February 2024 and has been made available to patients in other European countries, but it is not available to around 200 patients in Ireland.<\/p>\n
It is the only licensed treatment available for Friedreich\u2019s Ataxia.<\/p>\n
Last week, 47 members of the Fianna F\u00e1il parliamentary party signed a letter to Health Minister Jennifer Carroll MacNeill, Taoiseach Miche\u00e1l Martin, T\u00e1naiste Simon Harris and Ann O\u2019Connor, Chief Executive of the HSE calling for the decision to be reversed.\u00a0\n<\/p>\n
Meeting with Biogen company<\/p>\n
Today, Fine Gael TDs Miche\u00e1l Carrigy, Catherine Callaghan, Se\u00e1n Kyne, David Maxwell, Noel McCarthy, John Paul O\u2019Shea and Senator Noel O\u2019Donovan, met with\u00a0Biogen, the biotechnology company that makes the drug.\u00a0<\/p>\n
\u201cWe each have had a lot of contact with patients affected by this rare disease, as well as their families and advocacy groups and understand that the HSE\u2019s drug group\u2019s recommendation not to cover the cost of\u00a0Skyclarys\u00a0is devastating for them.<\/p>\n
\u201cWe are committed to continuing to represent them to all stakeholders and today\u2019s meeting with Biogen will, we hope, assist progress between the company and the HSE,\u201d said Carrigy.<\/p>\n
He said the objective of today\u2019s meeting was to appeal to Biogen to engage fully with the HSE on what is possible to get patients access to this drug.<\/p>\n
Biogen was also asked to give consideration to developing a compassionate access programme for patients and for this to be done in advance of the next HSE senior management meeting on 25 August.\u00a0<\/p>\n
Emily Felix, a trainee solicitor from Co Kilkenny, who has campaigned for the drug to be approved, has called on the public to attend a peaceful protest at Dublin\u2019s Garden of Remembrance on Sunday at midday.<\/p>\n
She said this is \u201cmore than a medicine, it is about our futures, our independence and our change to live fuller lives\u201d.\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"FINE GAEL MEMBERS today met with the manufacturers of Skyclarys, a disease-modifying drug for the rare disease Friedreich\u2019s…\n","protected":false},"author":2,"featured_media":642446,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[40],"tags":[9,10,18,271691,13,14,4771,553,249268,6,19,17,11,12,15,16,5,7,8],"class_list":["post-642445","post","type-post","status-publish","format-standard","has-post-thumbnail","category-ireland","tag-breaking-news","tag-breakingnews","tag-eire","tag-emily-felix","tag-featured-news","tag-featurednews","tag-fianna-fail","tag-fine-gael","tag-friedreich","tag-headlines","tag-ie","tag-ireland","tag-latest-news","tag-latestnews","tag-main-news","tag-mainnews","tag-news","tag-top-stories","tag-topstories"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/117112937346403447","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/642445","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=642445"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/642445\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/642446"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=642445"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=642445"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=642445"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}