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MLA Liz Kimmins has welcomed the news that the Belfast Trust has agreed to join the Early Access Programme for Givinostat, a potentially life-altering drug for boys like Alfie Pentony from Newry who is living with Duchenne Muscular Dystrophy.
The Newry and Armagh public representative said she and her party colleague Linda Dillon MLA met with the Health Minister back in April along with families of children with DMD, including Newry boy Alfie Pentony, where they urged the Minister to sign up to the programme. "My party colleague Linda Dillon MLA and I met with the Health Minister along with families of children with DMD in April this year, including Newry boy Alfie Pentony, and urged the Minister to sign up to this early access programme that could help to slow the progression of this disease."
DMD is a progressive and life-limiting condition that causes muscle wasting and immobility, making everyday tasks like eating and showering extremely difficult, with many sufferers requiring round-the-clock care. The disease can also have severe effects on the heart and lungs.
Kimmins said: "I welcome news that the Belfast Trust have issued appointments to boys with DMD through the early access programme for Givinostat, a potentially life-altering drug. Families need to know if their child can avail of the early access program as a matter of urgency."
She explained that whilst the treatment isn't a cure, access to Givinostat for eligible boys will help slow the disease's progression and prolong their independence. "This treatment is not a cure, however it will make a difference to the quality of life for these boys and they deserve to have the opportunity to have a better quality of life."
The MLA paid tribute to the families involved, saying: "I want to pay tribute to Alfie, and all the other boys and their families who have fought hard for this breakthrough. This will be life changing for them, and they should be very proud of what they have achieved."
Looking ahead, Kimmins said Sinn Féin will continue pushing for improvements to paediatric neuromuscular services across Ireland. She welcomed the work of her colleagues Dáire Hughes MP and Seán Crowe TD, who raised the issue at the all-Ireland Good Friday Agreement Committee in Leinster House and secured support for the committee to write to both Health Ministers. "Sinn Féin will continue to work hard to secure early access to life-changing programmes for patients right across Ireland," she concluded.
