HSE approved funding for the drug called Skyclarys<\/a>,\u00a0which has been shown to help alleviate the effects of the neuromuscular disease.\u00a0<\/p>\nA HSE drug group first recommended against funding the treatment, which costs \u20ac288,000 per patient per year.<\/p>\n
The HSE then said its senior management team \u201ctook account of a substantially improved financial offer made in recent days by the company Biogen to the HSE arising from intensive discussions\u201d.<\/p>\n
Fianna F\u00e1il representatives including TD P\u00e1draig O\u2019Sullivan and senators Teresa Costello and Anne Rabbitte welcomed news that reimbursement is to be in place from 1 October.\u00a0<\/p>\n
\u201cFor people living with Friedreich\u2019s Ataxia and their families, this has been an incredibly long and difficult wait,\u201d said O\u2019Sullivan.<\/p>\n
\u201cThe approval in August was a hugely important step, but families understandably and rightly wanted to know when that decision would translate into access to the treatment,\u201d he added.<\/p>\n
Costello meanwhile remarked that there has been \u201ca significant amount of work behind the scenes to get us here, and the 1 October date finally gives families something concrete to plan towards\u201d.<\/p>\n
\u201cFor people living with a progressive condition, every month matters,\u201d she added.<\/p>\n
Elsewhere, Rabbitte said the \u201cfocus now must be on ensuring the administrative arrangements are completed and reimbursement can commence as smoothly as possible from 1 October\u201d.\u00a0<\/p>\n
Independent TD and Minister of State Se\u00e1n Canney also welcomed the development.<\/p>\n
He said that the HSE has been \u201cprogressing the administrative and logistical arrangements needed to enable reimbursement as soon as possible\u201d.<\/p>\n
\u201cThis is an important update for people with Friedreich\u2019s ataxia and their families who have been waiting for access to this treatment,\u201d he said.<\/p>\n
\u201cThe HSE is working to have reimbursement arrangements in place from 1 October, and I hope the remaining processes can now be completed as quickly as possible.\u201d<\/p>\n
In a statement to The Journal, the Department of Health said that this is a matter for the HSE.<\/p>\n
The HSE meanwhile has been approached for comment.<\/p>\n
-With additional reporting from Diarmuid Pepper<\/p>\n","protected":false},"excerpt":{"rendered":"REIMBURSEMENT ARRANGEMENTS FOR a drug for patients suffering from Friedreich\u2019s ataxia will be in place from 1 October.\u00a0…\n","protected":false},"author":2,"featured_media":625826,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[233434,103,61,60,371],"class_list":["post-625825","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-friedreich","tag-health","tag-ie","tag-ireland","tag-medication"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/625825","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=625825"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/625825\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/625826"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=625825"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=625825"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=625825"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}