The T\u00e1naiste has rejected claims one committee is \u201cpassing the buck\u201d to another about access to a drug that could treat the rare neurological degenerative disease, Friedreich\u2019s ataxia.<\/p>\n
Simon Harris said there is a process under way \u201cguided by science\u201d and clinically led to assess the drug Skyclarys, which could slow the progression of the disease.<\/p>\n
The HSE\u2019s drugs group on July 14th made the decision to seek additional advice from the rare diseases technology review committee. <\/p>\n
But Sinn F\u00e9in leader Mary Lou McDonald, who raised the issue in the D\u00e1il, said \u201cthis is a process not so much guided by science as stalled and delayed by bureaucracy and indecision\u201d.<\/p>\n
She highlighted the cases of a number of the 200 people in Ireland living with the disease, who she said had been waiting two years for access to Skyclarys and had hoped the HSE drugs committee would finally approve the drug but \u201ctheir hopes were dashed\u201d.<\/p>\n
A number protested outside Leinster House on Tuesday, including Emily Felix (28) who has been living with Friedreich\u2019s ataxia since she was 12. \u201cShe says the system is telling her that her life is not worth saving,\u201d said McDonald.<\/p>\n
\u201cCraig Coady from Cork lost 13-year-old Rory to this condition last September. Now he watches as Paudie, his other son, aged 16, deteriorates with the same disease. <\/p>\n
\u201cHe says Paudie does not have weeks to wait. He says he cannot lose him too, as he is all he has left. That is what is at stake here. This is urgent.\u201d<\/p>\n
She said referring the issue to another committee \u201cmeans more delay and more time wasting \u2013 time that these people simply do not have because this condition does not slow down. It does not pause.\u201d<\/p>\n
McDonald said the disease \u201crobs people of their ability to stand, walk and swallow. It can rob them of their sight and their speech. When Friedreich\u2019s ataxia strikes a person\u2019s body, it invades every facet of them.\u201d <\/p>\n
\u201cTime is running out for many of these people\u201d but \u201cthe system stands still, putting up obstacle after obstacle, forcing them to wait and wait as time slips by\u201d.<\/p>\n
The Dublin Central TD said the drug was approved by the European Commission in 2024 and is now available in France, Germany, Portugal, Italy, Spain, and the Czech Republic. \u201cIt is available in Britain, Canada and USA, but not here.\u201d <\/p>\n
Appealing to the T\u00e1naiste, she said \u201cI am begging you to intervene\u201d, pointing out the drug could alleviate deterioration by as much as 50 per cent.<\/p>\n
The drug is estimated to cost \u20ac248,000 a year per patient. <\/p>\n
The T\u00e1naiste said he understood the worry and anxiety but insisted it was an ongoing process, bringing national clinical experts and patient representatives together.<\/p>\n
There was a four-week deadline for this committee to ensure \u201cevery possible opportunity is given to a medicine to demonstrate its effectiveness for patients\u201d. He said the manufacturer only made its commercial application in Ireland in May this year.<\/p>\n
\u201cA number of European countries have said \u2018no\u2019. Some have said \u2018yes\u2019,\u201d he said.<\/p>\n
\u201cWe must hear from the clinical experts who specialise in this condition in Ireland about the effectiveness of this drug. We will continue to monitor the outcome of that very closely.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"The T\u00e1naiste has rejected claims one committee is \u201cpassing the buck\u201d to another about access to a drug…\n","protected":false},"author":2,"featured_media":589269,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[274],"tags":[4767,18,135,19,17,462],"class_list":["post-589268","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-dail-eireann","tag-eire","tag-health","tag-ie","tag-ireland","tag-medication"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/116931527885180643","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/589268","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=589268"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/589268\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/589269"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=589268"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=589268"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=589268"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}