On Tuesday 26th June, Liz led a debate in Westminster Hall on improving access to innovative treatments for PKU patients. We had a great turnout at the debate from both MPs and visitors. I was particularly pleased to welcome families and children affected by PKU to Westminster to hear today’s debate – especially my constituent Archie.
Liz has been working hard with APPG on PKU and the National Society for Phenylketonuria (NSPKU) to pressure the Government into making the drug Kuvan available in the UK. Kuvan is currently in the appraisal process, but with no end date in sight, many of those affected in the UK are disappointed with the handling of the drug’s appraisal process.
Liz will next be taking part in the MPs PKU Diet for a Day challenge, on Thursday 28th June, to raise awareness of PKU. MPs will be required to eat a diet that gives you no more than 10g of protein in one day. They will not be able to eat anything on the “Red list” – such as meat, fish, eggs or cheese. They will only be able to eat a very small amount of foods of the “Amber list” – potatoes, beans, cereals and dairy. Most of their diet will comprise of foods from the “Green list” – fruits and vegetables.
MPs have taken on the challenge to raise awareness of the dietary struggles of people with PKU. Much of the food they can eat is only available on prescription, so enjoying an ordinary diet is not possible. Many PKU patients would benefit from Kuvan, which is available throughout Europe.
Liz Twist, MP for Blaydon and Chair of the APPG on PKU, said, “This condition causes real misery for those people, including many children, who live with the protein deficiency. Their whole lives are dominated by it, with very little access to the treatments, such as the drug Kuvan they need.
“We’re taking part in Diet for a Day to raise awareness so that PKU is properly recognised.”
“I’m working closely with my constituents living with PKU and MPs from all sides, in calling on the Government to improve access to the much-needed treatment.”
Kate Learoyd, Campaign Manager for the NSPKU, said, “We are very proud of the work we do at the NSPKU, and are delighted that MPs on the APPG are now working with us to improve access to this important drug.”