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Motion · S6M-03022 · 31 Jan 2022

Phenylketonuria (PKU)

Lodged by Fulton MacGregor (Scottish National Party) Members' Business Motion 25 supporters

The motion

That the Parliament recognises that phenylketonuria (PKU) is a rare metabolic condition where the body cannot process phenylalanine, an amino acid found in protein foods; understands that prolonged exposure to protein in their diet can result in people with PKU experiencing significant health issues, including brain damage; further understands that, at present, children and adults with PKU must follow an extreme dietary regime by cutting out almost all protein, weighing food and taking supplements, leaving them unable to make any spontaneous food choices or enjoy the same food as other people; understands that the drug, sapropterin, can assist in giving eligible people with PKU, including those in the Coatbridge and Chryston constituency, and across Scotland, some normality in their diet, and that the manufacturer of Kuvan, BioMarin Pharmaceutical, previously had an application for the drug turned down by the Scottish Medicines Consortium on grounds of cost; further understands that generic versions of sapropterin are now available; notes the calls on BioMarin Pharmaceutical to submit a new application, and further notes the calls on the NHS to explore any and all options to procure generic versions of sapropterin for prescription to eligible patients across Scotland.

Supporters (25)

Source: the Scottish Parliament motions and amendments record.