Peter Aldous attends the 1st anniversary event of the All-Party Parliamentary Group (APPG) on Phenylketonuria (PKU) which is campaigning to make the drug 'Kuvan' available on the NHS.
Phenylketonuria is a rare genetic metabolic disorder affecting around 1:10,000 people in the UK. People with PKU cannot metabolise phenylalanine, an amino acid found within protein foods. This disease can cause irreversible brain damage or impaired cognitive or neurological function if not correctly treated. A the moment, the only treatment that is funded in the UK is an extremely restricted dietary therapy in which almost all natural protein is removed from the diet.
In other European countries, the majority of PKU patients have access to the drug BH4 (Kuvan), which can increase a PKU person’s protein tolerance.
“The APPG has made many positive steps this year, and has put pressure on both BioMarin and NHS England to find a compromise and make Kuvan available on the NHS.”
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