Joan Collins (Dublin South Central, Independents 4 Change) | Oireachtas source

In 2018 and 2019, the families of children with the rare muscle-wasting disease, spinal muscular atrophy, launched a campaign to have the drug, Spinraza, approved. The public and Deputies were targeted so they would support the campaign to ensure patients in Ireland would be reimbursed for the clinically proven and licensed drug. Many Deputies, including the Taoiseach and the now Minister for Health, Deputy Stephen Donnelly, supported the families in question. The Deputies raised the issue in the Dáil and supported the families in person at the protests and audiovisual room briefings. At the time, Ireland was the only one of the Beneluxa initiative partners that had not approved the funding of Spinraza. It was eventually approved on 11 June 2019, and the families involved in the campaign and those affected by the illness were greatly relieved that their children could access the drug.

I received a telephone call from one of the families just last Thursday and learned that 12 children are still waiting to commence treatment. One of those waiting is a 17 year old woman. Her father, Pat, sent me an email.

It states:

I am looking for your help as the situation with my daughter is totally unacceptable. My daughter is deteriorating at an alarming rate while it is 391 days since Spinraza was approved and it sits on a shelf while my daughter lives in constant pain and discomfort.

His daughter sent a note, in which she states:

My case at the moment is that Spinraza, a life-changing drug for people with SMA, one of them being me, was approved on 11 June 2019. I have still received no access to it. Each day my muscles and body get weaker. When I was 12 I lost my ability to walk and by now, at 17, I have lost the ability to lift my arms up over my shoulders, brush my hair, turn myself over at night and even go to the toilet and have a shower alone. I need assistance to do every little thing.

I have lost so much quality in my life that I know Spinraza could bring back. Since my muscles have become weaker, I suffer from extremely bad anxiety. It has gotten to the stage that I cannot leave my house without my mam being by my side and I am so anxious that I am not able to sleep alone in my own room downstairs without panicking.

This woman's neurologist was in contact with the HSE before the pandemic and she was told no beds were available and the required care cannot be followed up. This is why the young woman has not been able to access Spinraza.

Why is this the case and will the Taoiseach find out the reasons? There are 12 people waiting for the treatment and they are concerned that the funding has stopped and they have not been told what is happening. Will the Taoiseach find out what is happening to these 12 people and provide a timeline on when their treatment will commence? I understand that Covid-19 has had an impact on our health services but these people should be given some sort of a timeline and told they will be treated by a certain date.

See this speech in context