A number of weeks ago I raised the concern of the 12 patients aged under 18 awaiting Spinraza. I knew the Taoiseach would be concerned because he was so involved in the campaign last year. I have not heard anything back from his office. I was hoping that he would respond positively. I got a reply to a parliamentary question I tabled along with other Deputies, which stated Children's Health Ireland, CHI, confirmed that it is in a continuous engagement process with families regarding their child's individual plan for the administration of Spinraza. I talked to Lauren from my constituency this morning who raised it with me. There has been no contact. There was a general contact with the advocacy group. I am concerned that I will not be able to raise the issue again for another six weeks. These patients are waiting in pain for their care even to be set up. I ask the Taoiseach to respond.

I apologise to the Deputy for not getting back to her on it. As she knows, approximately 35 patients with spinal muscular atrophy, SMA, aged 18 or under are deemed clinically eligible for treatment with Spinraza. To date, 34 patients have been approved by the HSE for use of Spinraza. The HSE has confirmed that a new patient commenced treatment on Spinraza last week, bringing the total number of patients receiving treatment with Spinraza to 19. For patients who had commenced treatment on Spinraza, the service has continued during the Covid crisis but a number of patients who were waiting to start treatment have been put on hold due to the Covid-19 pandemic.

CHI has confirmed that a clinical nurse manager will commence at the end of July. It is working to accommodate the remaining patients bearing in mind Covid-19 social distancing restrictions. Individual treatment plans are being worked out for each of the remaining patients. CHI has informed the Department that it has identified a small number of SMA patients whose cases are extremely complex given the severity of their respiratory failure, the non-invasive respiratory support they require and the severity of their scoliosis. This already complex procedure in administering Spinraza is even more involved with these patients who will require Spinraza to be administered by specialised technique, using interventional radiology. They will require some degree of sedation to tolerate this procedure.

I can forward to the Deputy details of the complexities relating to some of the patients.