{"id":176120,"date":"2025-06-11T16:32:09","date_gmt":"2025-06-11T16:32:09","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/176120\/"},"modified":"2025-06-11T16:32:09","modified_gmt":"2025-06-11T16:32:09","slug":"parents-of-newry-boy-seeking-access-to-life-changing-drug-react-to-trusts-ludicrous-cost-estimate-armagh-i","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/176120\/","title":{"rendered":"Parents of Newry boy seeking access to \u2018life changing\u2019 drug react to Trust\u2019s \u2018ludicrous\u2019 cost estimate \u2013 Armagh I"},"content":{"rendered":"

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The family of a Newry<\/a> boy fighting for access to a new \u201clife-changing\u201d medication are now challenging the Belfast Health and Social Care Trust\u2019s cost estimation for access to the drug \u2013 calling it \u201cludicrous\u201d.<\/p>\n

Jamie and Colleen Pentony \u2013 the parents of 12-year-old Alfie Pentony \u2013 have been campaigning for their son\u2019s access to treatment since his diagnosis in 2016 with Duchenne Muscular Dystrophy.<\/p>\n

For almost ten years, Alfie has been managing the inherited muscle wasting condition through bi-annual appointments at a private hospital in Newcastle, steroid medication and yearly visits to America for advanced specialist treatment.<\/p>\n

However, in February of this year, a new trial drug called Givinostat was approved for UK use by Medicines and Healthcare products Regulatory Agency (MHRA) for all people with DMD aged 6 and older.<\/p>\n

Related:<\/strong> \u2018Time is muscle\u2019: Parents of Newry boy with DMD call for immediate response to \u2018life-changing\u2019 drug approval <\/a><\/p>\n

Access to this drug, however, has not yet been granted for Alfie and 12 others like him living in Northern Ireland.<\/p>\n

Colleen spoke to Armagh I in February about The Health Trust\u2019s lack of engagement in the drug\u2019s free Early Access Programme (EAP) \u2013 for which they cited cost and storage issues as the reason not to engage.<\/p>\n

As parents of a child with DMD, Colleen and Jamie understand that \u201ctime is muscle\u201d. They repeat it endlessly because as each second passes Alfie \u2013 and those like him \u2013 are edging progressively closer to losing their ability to walk.<\/p>\n

And \u2013 in order to participate in Givinostat\u2019s EAP \u2013 the boys must be \u201cambulant\u201d (independently walking).<\/p>\n

After meeting with the Health Minister for Northern Ireland, Mike Nesbitt in May Colleen believed there may have been hope on the horizon.<\/p>\n

Related:<\/strong> 12-year-old Newry DMD warrior discusses access to \u2018life-changing\u2019 drug with NI Health Minister <\/a><\/p>\n

However, just over one month on and those hopes have \u2013 once again \u2013 been dashed, she says.<\/p>\n

In response to a Freedom of Information (FOI) request, the Belfast Health and Social Care Trust have informed that the costs associated with a \u201cfull year effect\u201d including resources for engagement in the programme to be a whopping \u00a3309,000.<\/p>\n

The FOI did stipulate that the information should be \u201cheavily caveated\u201d with the following points, included herein verbatim from the report:<\/p>\n