Westminster Hall debate on PKU

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.

Image may contain: 18 people, people smiling, people standingLiz 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.Image may contain: 7 people, people smiling, people standing

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.”


MPs sign Early Day Motion (EDM) to improve access to treatment for Phenylketonuria (PKU) patients

MPs today signed an EDM supporting the need for improved access to treatment, support and innovative new medicines for PKU patients.

The six MPs, noted below, hope many more MPs will now follow. The six MPs, including  the MP for Blaydon, Liz Twist, also hope the EDM will raise awareness of PKU, a rare metabolic disease which inhibits the ability to metabolise phenylalanine within protein. There is a concern among MPs that the only treatment currently provided by the NHS is a severely restricted diet which places a great burden on patients or carers.


PKU Early day motion

APPG for Phenylketonuria (PKU)


Yesterday Liz was delighted to Chair an All-Party Parliamentary Group (APPG) aiming to raise the profile of the rare disease, Phenylketonuria (PKU).
PKU 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.
Currently, the only treatment funded in the UK is an extremely restricted dietary therapy in which almost all natural protein is removed from the diet. The majority of PKU patients in other European nations have access to the drug BH4 (Kuvan), which can increase a PKU person’s protein tolerance. The NHS does not currently commission Kuvan treatment.
We am hopeful the APPG will raise awareness of PKU and consider the need for improvements to access to treatment. The picture shows Liz with members of the NSPKU (National Society for Phenylketonuria).