Dudley North MP Ian Austin is helping lead a Parliamentary campaign for life-changing treatments for people with Phenylketoria (PKU), a rare genetic disorder.
He took up the campaign after being contacted by constituents with the condition which leaves people unable to process protein properly in the body. This leads to a toxic build-up of phenylalanine which can cause irreversible brain damage.
People with the condition are campaigning for access to the drug Kuvan which would enable them to eat normal amounts of protein safely, but NHS England have again refused to fund the treatment.
Austin has previously organised meetings for MPs, campaigners from The National Society of Phenylketonuria (NSPKU) and the Acting Director of Specialised Commissioning at NHS England (NHSE), John Stewart.
NHS England (NHSE) recently announced that the drug Kuvan for treatment of Phenylketoria (PKU) was not prioritised for NHS use in the July funding round.
Austin and members of the All Party Parliamentary Group (APPG) on PKU met NHSE to discuss how they can ensure that Kuvan is successful in the next funding round.
He is calling on the Health Secretary, NHSE and Biomarin - the pharmaceutical company who produce Kuvan - to do all they can to ensure people with PKU get access to Kuvan.
Ian Austin said:
“I first learnt about the condition from one of my constituents in Dudley, Kirsty Thornton, who was struggling to get the supplements that were vital to treat her PKU.
“I’ve met campaigners, taken part in the PKU Diet Challenge and worked hard with the APPG on PKU to ensure that people with PKU get access to the treatments and supplements they need.
“It is a very disappointing decision but we are going to keep campaigning for all of the key decision makers to get in a room and sort this out as soon as possible.”