{"id":488145,"date":"2026-06-07T22:44:09","date_gmt":"2026-06-07T22:44:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/488145\/"},"modified":"2026-06-07T22:44:09","modified_gmt":"2026-06-07T22:44:09","slug":"my-little-boys-life-is-in-the-hands-of-the-hse-mother-makes-plea-for-drug-to-be-approved","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/488145\/","title":{"rendered":"‘My little boy\u2019s life is in the hands of the HSE’: Mother makes plea for drug to be approved"},"content":{"rendered":"

Families hope that it could be discussed at a meeting of the HSE Drugs Group this month.<\/p>\n

Archie, from Tallaght, was diagnosed with Duchenne muscular dystrophy (DMD) in December 2024. The condition, a severe progressive genetic disorder that weakens muscles, affects around 100 children in Ireland.<\/p>\n

Ms Ennis and her husband Kenneth fundraised money to get the \u20ac3.2m gene therapy for Archie. The Ennis family moved to the US in January and stayed there for four months as Archie took part in a clinical trial. They now must return once a month, for three months.<\/p>\n

\u201cWe wish we could have had it in our own country, to be at home,\u201d Ms Ennis said.<\/p>\n

\"UnaUna Ennis and husband Kenneth with a picture of their son Archie outside Leinster House last year, calling for access to Givinostat. Picture: Sam Boal\/Collins\u00a0<\/p>\n

Stairs have become a big obstacle for Archie as his muscles become weaker. Following gene therapy, his worried parents did not initially see results, until one day he \u201cjust took off and went up the stairs\u201d with his little sister Maisie.<\/p>\n

\n It\u2019s amazing that he had gene therapy, but in order for us to keep him on his feet and to give him the best life possible, Givinostat is Archie\u2019s future.\n <\/p>\n

\u201cGivinostat is a daily medication that Archie will need to keep him strong, to keep him on his feet, and to give him like a normal childhood.<\/p>\n

\u201cI\u2019m not naive to the fact that it\u2019s not going to cure him, but it will help him. It will also change the history of Duchenne and give so many families so much hope.\u201d\u00a0<\/p>\n

While the long-term impact of Archie\u2019s clinical trial is unknown, doctors hope it could change the trajectory of the disease.<\/p>\n

However, Archie could still end up in a wheelchair if he cannot access Givinostat.<\/p>\n

In its assessment of Givinostat, the National Centre for Pharmacoeconomics (NCPE) said it should \u201cnot be considered for reimbursement unless cost effectiveness can be improved\u201d.<\/p>\n

It has now been referred to the HSE Drugs Group for decision.<\/p>\n

Ms Ennis questioned \u201chow any human could even say\u201d the drug is not value for money, as she said the long-term impacts of not treating the condition will be more expensive, as DMD children will need physiotherapy, hydrotherapy, wheelchairs, house adaptations, and longer-term carer requirements.<\/p>\n

Archie will need carers by age 16 if he does not start taking Givinostat, she said.<\/p>\n

Ms Ennis suggested that the decision-makers are seeing money rather than \u201csick boys\u201d.<\/p>\n

\"ArchieArchie Ennis, who has Duchenne muscular dystrophy. Picture: Gofundme<\/p>\n

\u201cIt is very unfair that my little boy\u2019s life is in the hands of the HSE,\u201d she said.<\/p>\n

\u201cIt\u2019s indescribable as a parent. I\u2019ve done everything I could to get the gene therapy, and I did, but now this is out of my hands.<\/p>\n

\u201cI just hope that they see Archie and not see the cost-effectiveness.\u201d<\/p>\n

A spokesperson for the HSE said the Drugs Group meets on the second Tuesday of each month but would not confirm if Givinostat was up for discussion in June as the agendas for these meetings are \u201cnot publicly available\u201d.<\/p>\n","protected":false},"excerpt":{"rendered":"Families hope that it could be discussed at a meeting of the HSE Drugs Group this month. Archie,…\n","protected":false},"author":2,"featured_media":488146,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[4892,2120,61,60,43],"class_list":["post-488145","post","type-post","status-publish","format-standard","has-post-thumbnail","category-ireland","tag-health-news","tag-hse","tag-ie","tag-ireland","tag-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/488145","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=488145"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/488145\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/488146"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=488145"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=488145"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=488145"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}