Sinn Féin MLA Liz Kimmins has welcomed news that the Belfast Trust have agreed to join the Early Access Programme for Givinostat for boys with Duchenne Muscular Dystrophy.
The Newry/Armagh MLA:
“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 disease. Muscle wasting and immobility means everyday tasks such as eating and showering are extremely difficult with many sufferers requiring 24/7 care. It can also have severe effects on the heart and lungs.
“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.
“Access to the Givinostat treatment for those boys that can get it, will help slow the progression of the disease and help the boys manage their condition 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.
“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.”
Liz Kimmins MLA concluded;
“We will continue to work hard to improve paediatric neuromuscular services across Ireland. I welcome the initiative taken by my Sinn Féin colleagues Dáire Hughes MP and Seán Crowe TD, who have raised this issue at the all-Ireland Good Friday Agreement Committee in Leinster House. Last night they secured the support of the committee to write to both Health Ministers to encourage them to advance these services north and south.
“Sinn Féin will continue to work hard to secure early access to life-changing programmes for patients right across Ireland.”
CRÍOCH/ENDS
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