NHS England decision regarding Kuvan

NHS England has today released its decision on which new specialised treatments should be routinely commissioned for use in England. Kuvan (sapropterin) has not been prioritised for funding. NHS England has informed the NSPKU that it intends to reconsider funding Kuvan again in the next specialised commissioning round in November 2019.

We are aware that this decision is extremely upsetting for the patient community. It is our understanding that the only EU countries that do not routinely use Kuvan are Poland and the UK.

On Tuesday 23 July 2019, John Stewart, the Director of NHS England Specialised Commissioning will attend Parliament to discuss the situation with members of the All Party Parliamentary Group for PKU. We will provide a further update following discussions with NHS England next week.

Members can contact the NSPKU for guidance on 030 3040 1090 or email info@nspku.org.

18 July 2019