ACCESS TO VORASIDENIB IN THE UK

LGGs afflict mainly young people – some have not finished their education, many have just begun their careers, some are hoping to start a family whilst some already have children. All are desperate for an effective treatment to enable them to live their lives as fully as possible.

When news first broke of the successful trials of Vorasidenib on Low Grade Glioma (LGG) brain tumour patients, many patients and their families were of the opinion that, at last, there was hope for the future.  Click here for more details of the trial

The good news is that Vorasidenib is now available in the UK, via an early access scheme,  to LGG patients with IDH1/2 mutation who have had surgery but not radiotherapy/chemotherapy.  At present there are only a few neuro centres offering the drug – these are The Royal Marsden, Wessex, Southampton, the Christie, Manchester and, we believe, Birmingham.  We believe that the best course of action would be to go through your GP and ask to be referred.  Unfortunately, it is a bit of a lottery at present but hopefully things will change now that the drug has gained FDA approval in the US.  Some neuro centres may only be taking patients in their catchment area – hopefully this will change!