Isaac (6) who is pleading with the Minister to give him the medication he needs
The parents of a Kilkenny youngster in desperate need of medication to give him a chance at walking and to extend his life expectancy are pleading with the HSE to fund the drug.
Isaac (6) from Kilkenny City lives with Spinal Muscular Atrophy (SMA). His parents Carol and Philip are campaigning for the HSE to approve reimbursement for the life-saving drug, Spinraza, which is the first ever approved treatment for the degenerative genetic condition.
The HSE Leadership Team are due to meet tomorrow (Thursday). It is hoped that a final decision will be reached on whether or not the drug will be made available to those living with SMA.
“It is really important that Isaac gets the treatment, as it could help prevent long term muscle weakness and other detrimental impacts that go with his condition,” his mother Carol told the People. “Spinraza will most importantly increase his life expectancy. It is really not much to ask for in life.”
Without the drug Isaac’s life expectancy is just 20 years of age.
“The journey has been emotional torture for us,” she said. “We have been given false hope every month. We were told we would have a final decision in December, this was then put on hold. We were advised the same in January and now told the HSE leadership team is currently going through the final stages of assessment. The various reports are due to be discussed at the meeting, following which the final decision will be notified.
“We would like to thank all the politicians, including Deputy John Paul Phelan, Deputy Aylward, Deputy McGuinness and Cllr Malcolm for their support and our wonderful family and friends,” she added.
Deputy Bobby Aylward again raised the matter in the Dáil last week.
“There is significant evidence that Spinraza is changing children’s lives,” he said. “It is slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life.
“There are parents in Kilkenny who consistently make representations to me on this issue. It is heart-breaking for them to know that there is a drug available, which could greatly improve their child’s life, but cannot access it through its cost.
Meanwhile Deputy John McGuinness has also campaigned for access to the drug.
“The HSE should make a positive decision on Spinraza as the drug holds so much hope for those who need it,” he said. “This is a very important week for Isaac and others and my thoughts and support are with them.”