House of Commons
ACCESS FOR PHENYLKETONURIA PATIENTS TO TREATMENT, SUPPORT AND INNOVATIVE NEW MEDICINES
EDM #1044
Tabled 08 March 2018
2017-19 Session
That this House recognises the need to raise awareness of phenylketonuria (PKU), a rare metabolic disease which inhibits the ability to metabolise phenylalanine within protein; notes that the disease can cause irreversible brain damage or impaired cognitive or neurological function if not correctly treated; is concerned that the only treatment currently provided by the NHS is a severely restricted diet which places a great burden on patients or carers; acknowledges the impact of PKU on patients, carers and family life; further notes the particular need for care and treatment to support women with PKU in pregnancy and prior to conception to ensure safe pregnancies that minimise stress on women with PKU; further recognises the need to ensure consistent access to special dietary foods, protein substitutes, dietetic and psychological support to assist people with PKU to manage their condition; understands that the medicine Kuvan for the treatment of PKU is due to be appraised for use on the NHS; further understands that Kuvan is widely available for patients with PKU in the majority of European countries; and supports the calls of the charity the National Society for Phenylketonuria (UK) Limited for the appraisal to be concluded swiftly.

Signatures (30)

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In addition to the sponsors, the following Members have signed to support the motion.
There are no withdrawn signatures for this Motion