AQW 4437/22-27

Ms Paula Bradshaw
Alliance Party
South Belfast

Tabled Date: 11/10/2022
Answered On Date: 25/10/2022
Priority Written: Yes

Question:
To ask the Minister of Health on what date will people under the age of 22 gain access to the drug Kuvan, which has been approved for use by the National Institute for Clinical Excellence for use against Phenylketonuria and is available elsewhere in the UK.

Answer:

Sapropterin (Kuvan) for treating hyperphenylalaninaemia in phenylketonuria was recommended for use by NICE through TA 729 on 22 September 2021 and has been available as commissioned therapy since that date.

In late September 2021 the HSCB met with clinical and management team in the Belfast Trust to discuss the arrangements for implementation. Trust colleagues highlighted some of the challenges with the delivery of this therapy associated primarily with a complex patient assessment pathway involving intensive monitoring arrangements and testing, and all of which needs to be completed to ensure that treatment is appropriate.

Funding to allow recruitment of significant additional staffing infrastructure investment to enable full implementation of the service, has now been made available to the Trust. The Trust is now actively undertaking the assessment and testing of patients and will provide treatment where appropriate to patients up to the age of 22, in line with the NICE Recommendations.