Closed petition Fund Kuvan (sapropterin) on the NHS for people with PKU

Closed on 22 September 2021

The drug Kuvan allows people with the rare condition PKU to manage their condition. The treatment has been licensed for 11 years but has never been commissioned by the NHS.
The government should make funding available for this treatment for all PKU patients that could benefit.

PKU is a rare condition, diagnosed at birth. People with PKU cannot process protein through their body properly and without careful management an amino acid (phenylalanine) causes brain damage. The only treatment funded by the NHS is a restricted diet containing virtually no natural protein. The PKU diet is stressful and difficult to cope with. Outcomes are variable.
Kuvan (sapropterin) is a life changing treatment available in almost every country in Europe. It needs to be available here.