Sapropterin
(asked on 23rd January 2018) - View Source
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many pregnant women with phenylketonuria have received Kuvan (sapropterin) treatment since that drug has been licenced for use in the UK; and what is the average duration of the course of that treatment.
The information requested is not held centrally.
In 2013, NHS England published a policy on the use of Sapropterin for the management of Phenylketonuria (PKU) during pregnancy:
https://www.england.nhs.uk/wp-content/uploads/2013/04/e12-p-a.pdf
NHS England has now received a Preliminary Policy Proposal for the use of Sapropterin in the management of PKU for adults and children, as new evidence has now been published to support its use. This was considered by the Clinical Panel this month where it was agreed that NHS England will need to further review the evidence. NHS England will be working with the National Institute for Health and Care Excellence to agree the best approach to this and whether the policy should subsequently be reviewed. The NHS England process for development of Clinical Policies can be found here:
https://www.england.nhs.uk/publication/methods-national-clinical-policies/