NSPKU statement on NHS England Kuvan policy

The NSPKU have recently been informed by NHS England that it will develop a policy for using Kuvan (sapropterin) with the intention that the policy will be considered for an investment decision in November 2018. We understand that the planned appraisal of sapropterin by NICE (the National Institute for Health and Care Excellence) is not affected. 

NSPKU will take part in the proposed NHS England Working Group to develop the policy and will raise the experience of all people living with PKU as reported in the NSPKU survey. NSPKU supports the use of Kuvan by patients of all ages that would benefit from the treatment.

NSPKU welcomes NHS England’s announcement that it is working to reconsider its policy not to routinely fund Kuvan treatment. We will continue to work with the NHS and the All Party Parliamentary Group for PKU for increased understanding of the challenges of living with PKU and the need for investment in services for all people with PKU. The NSPKU supports the use of any safe and effective treatment to help people live healthy lives with PKU and will advocate accordingly in all parts of the United Kingdom.

6th August 2018