As a person living with neurofibromatosis, a genetic condition caused by a mutated gene resulting in the growth of plexiform fibromas around the body, I am fighting for the government to grant access to MEK inhibitors, a drug that could greatly reduce pain/immobility caused by inoperable tumours.

MEK inhibitors are cancer targeting drug that block a step in the cell growth pathway. When this pathway is overactive it can result in the rapid growth of tumours, both cancerous and non-cancerous. By interrupting this, the growth of the tumour can be slowed or reduced in size. Access to this drug could change so many lives, especially those living with an NF1 but much like the condition, we believe it is incredibly underfunded essentially putting a price tag on the quality of somebody’s life.