{"id":603020,"date":"2026-08-24T10:42:12","date_gmt":"2026-08-24T10:42:12","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/603020\/"},"modified":"2026-08-24T10:42:12","modified_gmt":"2026-08-24T10:42:12","slug":"campaigners-hold-protest-in-dublin-calling-for-life-changing-skyclarys-access","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/603020\/","title":{"rendered":"Campaigners hold protest in Dublin calling for life-changing Skyclarys access"},"content":{"rendered":"

Skyclarys has shown promising results in slowing the progression of Friedreich\u2019s Ataxia, a rare progressive neuromuscular condition affecting around 200 people in Ireland<\/p>\n

15:22, 23 Aug 2026Updated 15:33, 23 Aug 2026<\/p>\n

\"Friedreich's<\/p>\n

Friedreich’s Ataxia campaigners protest in Dublin to push for Skyclarys approval in Ireland(Image: Sam Boal\/Collins Photos)<\/p>\n

Demonstrators took to the streets in Dublin city centre on Sunday calling on the HSE to approve reimbursement for Skyclarys, a drug used to treat Friedreich’s Ataxia<\/a>.<\/p>\n

It comes after the HSE Drugs Group decided to recommend that the drug should not be covered by the HSE<\/a>.<\/p>\n

The committee raised concerns about “limitations and uncertainties” associated with the efficacy of the drug and its current price.<\/p>\n

The recommendation will be considered by an HSE senior management team, which will make a final decision on Tuesday, August 25.<\/p>\n

\"Campaigners<\/p>\n

Campaigners are calling on the HSE to approve reimbursement for Skyclarys, a drug used to treat Friedreich’s Ataxia(Image: Sam Boal\/Collins Photos)<\/p>\n

Friedreich\u2019s ataxia is a rare progressive neuromuscular condition affecting around 200 people in Ireland<\/p>\n

While there is currently no cure for Friedreich\u2019s ataxia, which causes nerve damage, muscle weakness and mobility loss, a drug known as Skyclarys has shown promising results in slowing the progression of the disease by up to 50%.<\/p>\n

However, access to the treatment remains out of reach for patients in Ireland. The HSE has not yet agreed to reimburse the cost of the drug, leaving families in limbo.<\/p>\n

Demonstrators gathered at the Garden of Remembrance in Dublin on Sunday afternoon calling for access to Skyclarys medication for people living with Friedreich\u2019s Ataxia in Ireland.<\/p>\n

The campaigners are urging the Government to intervene and approve funding for the treatment, arguing that delays could have life-altering consequences.<\/p>\n

\"Friedreich's<\/p>\n

Friedreich’s Ataxia is a rare, progressive neuromuscular condition that causes nerve damage, muscle weakness and mobility loss. It is believed there are around 200 people with the condition in Ireland. (Image: Sam Boal\/Collins Photos)<\/p>\n

Families affected by the condition say they will continue to push for access to Skyclarys, hoping their voices will lead to change before more lives are lost.<\/p>\n

In a statement to RT\u00c9 last week, the HSE said its Drugs Group had \u201cconsidered an assessment from the National Centre for Pharmacoeconomics which found that while there is some evidence that this drug may slow disease progression in Friedreich\u2019s Ataxia, that there remain limitations and uncertainties associated with the available clinical efficacy data\u201d.<\/p>\n

It added: \u201cThey also concluded that the current price was substantially above the level typically regarded as cost-effective in Ireland having regard to the limited efficacy of the drug.\u201d<\/p>\n

Subscribe to our newsletter for the latest news from the Irish Mirror direct to your inbox: Sign up here<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"Skyclarys has shown promising results in slowing the progression of Friedreich\u2019s Ataxia, a rare progressive neuromuscular condition affecting…\n","protected":false},"author":2,"featured_media":603021,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[103,2120,61,60,371],"class_list":["post-603020","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-health","tag-hse","tag-ie","tag-ireland","tag-medication"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/603020","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=603020"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/603020\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/603021"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=603020"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=603020"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=603020"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}