On 17th September, the Welsh Government wrote to NHS Chief Executives across Wales to inform them that an agreement had been reached with Novartis Pharmaceuticals UK Limited for the provision of Everolimus for TSC patients.   

This two-year agreement is the first of it’s kind for NHS Wales.  The agreement will allow funded access to everolimus for brain (SEGA) and kidney (AML) tumours associated with TSC.   
Over the course of the two-year agreement, routine data will be collected to support future submissions to health technology appraisal bodies such as the National Institute for Health and Care Excellence (NICE) and the All Wales Medicines Strategy Group (AWMSG).   
The agreement comes just 3 months after the launch of the Cardiff TSC Clinic lead by Professor Julian Sampson in Cardiff and the appointment Jenny Jones, of our first Adviser for Wales.

Dr Chri Kingswood said:
‘This is brilliant news for people with TSC in Wales and an enormous relief for those who need access to Everolimus. What we need now is for the NHS in England, Scotland and Northern Ireland to take action, and to ensure people with TSC throughout the UK are able to benefit regardless of where they live.’