Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

Gabhaim buíochas leis an gCeann Comhairle.

The date 11 June 2019 was and will always be a red letter day in the lives of those children and their families who will now finally get the chance to have new life experiences and prospects, thanks to the HSE leadership team's decision to approve the drug Spinraza. It could and should have been a red letter day in the lives of all SMA sufferers, but, sadly, approval only extended to children up to the age of 18 years. We must all be conscious of the adult SMA population in Ireland who have been left behind by this decision and are feeling very disappointed and isolated. What will happen when children turn 18 years of age?

I will read extracts from two emails I received in the wake of the decision. One is from an adult Irish woman, a mother and a wife, who has SMA, while the other is from an adult American male who also has SMA but who has access to Spinraza. Both are in their 50s. The adult Irish female states in her correspondence what it has been like living with spinal muscular atrophy since she was a teenager. She recently celebrated her 50th birthday. I quote:

Last year our SMA Ireland family was formed. It was and is wonderful to be part of a support network because some of us adults have been battling this disease for decades on our own, apart from family, physiotherapists, and occupational therapists. I was thrilled on Tuesday last, 11 June, that at last Spinraza was approved for children but devastated for myself, my husband, my daughter, my family, and for the other SMA adults living in Ireland.

Addressing the Minister for Health, Deputy Harris, she stated:

You also have a daughter, Minister Harris. You know how much love a parent has for their child. I had to greet my daughter at the school gate on that Tuesday with the devastating news that her mother will not get Spinraza. I tried to explain the inexplicable. She cried as I have done. Time is not on my side.

Yours in anticipation.

I turn to the adult American male. I will only quote extracts from his email:

Denying adults access to this drug is heartless and inhumane. I am living proof that Spinraza does work for adults suffering with SMA. I am an American male, 54 years of age, who was diagnosed with SMA in my early 20s. This was a terrifying time in my life. After diagnosis I spent the next 20 years watching this disease slowly rob me of my ability to play with my children, my hobbies, my ability to perform even basic home maintenance, and eventually my ability to work and provide for my family. I started treatment with Spinraza back in October of 2017. Since starting treatment, my disease progression not only stopped but I began to see improvements in my walking gait, my overall strength and my endurance. Before treatment I needed a walker just to stand up from a lift chair. That walker is no longer needed. Before treatment I needed assistance in order to lift my leg into a vehicle. This is no longer needed. These achievements may seem minuscule but for someone who is facing the inevitable total loss of independence, Spinraza is offering a new chance of life. Please make Spinraza available for all because every life matters.

I close with the request that the Minister of State respond positively to the appeal of the SMA community and that she, please, ensure approval for the reimbursement of Spinraza for all SMA sufferers.

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