HSE<\/a>\u2019s move to make Filsuvez available as an important step to ease the lives of 300 people battling the illness, also known as butterfly skin.<\/p>\nEB is caused by an absence of proteins between skin layers, meaning skin becomes ultra fragile and blisters at the mildest touch.<\/p>\n
The new gel treatment Filsuvez promotes the healing of wounds associated with EB and will be accessible to those prescribed it by their consultant.<\/p>\n
It is applied to a sterile, non-adhesive wound dressing or directly to the skin and can reduce the frequency of bandage changes and ease the pain of wounds.<\/p>\n
The HSE has agreed to pay all or most of the cost of the drug, depending on what scheme patients qualify for.<\/p>\n
Debra chief executive Jimmy Fearon said introducing Filsuvez \u201cis a promising start, as it can offer temporary pain relief, and we hope it will mark the beginning for the treatment of EB in Ireland\u201d.<\/p>\n
\u201cThis has been a long journey and marks a transformative moment for people living with this rare skin condition,\u201d he said.<\/p>\n
Last year, the National Centre for Pharmacoeconomics recommended that the gel, developed by pharma group Chiesi, be considered for what is known as reimbursement.<\/p>\n
Mr Fearon said the charity hopes it is the beginning of EB-specific medicine reimbursement in this country.<\/p>\n
\u201cThis decision represents hope, dignity and meaningful progress for EB patients and their families,\u201d he said.<\/p>\n
\u201cFor too long, people living with EB have had no approved treatment options. Ireland is in the lowest quartile in Europe for introducing new drugs to the market.<\/p>\n
\u201cThe average timeline from European Medicines Agency decision to reimbursement in this country is 1,024 days, far beyond the 611-day average in the rest of Europe,\u201d Mr Fearon said.<\/p>\n
\u201cThe HSE\u2019s commitment to reimburse Filsuvez is a powerful acknowledgment of the urgent unmet need within this community.\u201d \u2013 PA<\/p>\n","protected":false},"excerpt":{"rendered":"The first authorised treatment for a painful and rare skin condition has been made available in Ireland in…\n","protected":false},"author":2,"featured_media":435148,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[103,1418,61,60],"class_list":["post-435147","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-health","tag-health-service-executive-hse","tag-ie","tag-ireland"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/435147","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=435147"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/435147\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/435148"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=435147"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=435147"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=435147"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}