Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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742. To ask the Minister for Health the number of children with spinal muscular atrophy eligible for treatment with the approved drug Spinraza; the number of those receiving the treatment; the reason for the delay in treatment for some of these children such as a child (details supplied); the way in which and when these issues will be addressed in order that all children can receive this vital treatment; and if he will make a statement on the matter. [6209/20]

Simon Harris (Wicklow, Fine Gael)
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The HSE has statutory responsibility for medicine pricing and reimbursement decisions, in accordance with the Health (Pricing and Supply of Medical Goods) Act 2013.  The Act specifies the criteria to be applied in the making of reimbursement decisions which include the clinical and cost effectiveness of the  product, the opportunity cost and the impact on resources that are available to the HSE.

I can advise the Deputy that on 11 June 2019, the HSE Leadership Team approved access to the drug Nusinersen (Spinraza) for children with Spinal  Muscular Atrophy (SMA) Type I, II or III on an exceptional and  individualised basis.

To date, the total number of patients deemed eligible to receive Spinraza is thirty five.  Children's Health Ireland (CHI) has confirmed that 18 patients are currently receiving Spinraza.  Due to Covid-19, a number of patients who were due to commence treatment have been put on hold. 

Individual applications for each patient are prioritised based on clinical need and a treatment plan and a date for administering the drug is agreed with their treating clinician.

The actual delivery of this drug to approved patients in a safe and sustainable way requires very specific and quite complex service arrangements to be put in place in CHI across all sites.

CHI has confirmed that in order to support the SMA service arrangements, recruitment is underway, as a matter of priority for a number of key positions.  A primary focus of CHI is to appoint a physiotherapist and nursing co-ordinator (certified nurse-midwife) as a matter of priority.  The nursing co-ordinator will coordinate the service as well as manage face to face communication with patients and their families.

I am advised that CHI is currently engaging with families regarding each child’s individual treatment plan for the administration of Spinraza.