This afternoon we had the third meeting of the APPG on Phenylketonuria (PKU). It was great to discuss the updates in both NICE and NHS England’s appraisal of PKU drug Kuvan, which is still not available on the NHS.
We also discussed the problems many PKU patients are having in getting their essential dietary products prescribed by their local CCGs. I will be writing to CCGs nationwide about this.
I will continue to fight for PKU patients! I hope in the near future we will finally see Kuvan available on the NHS, and also see dietary products more readily available for patients.