Page last updated: 11th October 2022

On 11th October 2022, Novartis advised the National Multidisciplinary Team (NMDT) that 92 children have been treated across the UK (including Scotland) since the start of the UK programme.

The numbers of children each Centre can treat each month depends on demand and staff availability. All Centres have scheduled treatment slots. Newly diagnosed children take priority.

Sometimes bookings have to be delayed due to children being unwell. If Zolgensma has been delivered to the Centre, where possible, Centres try to offer these appointments to another child:

• Who has a later booking agreed for another Centre
• Whose infusion hasn’t already been ordered from the manufacturer Novartis Gene Therapies
• Who is within the same weight band as the ‘cancelled’ child, so is able to receive the infusion dose that the hospital has received
• Whose family is able to travel at short notice.

This is challenging for families and Centres to manage.

Equity of access to treatment, regardless of location, remains very important to the NMDT.