Phenylketonuria: Treatment and Support Debate
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Chris Williamson
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Phenylketonuria: Treatment and Support
Chris Williamson Excerpts(6 years, 5 months ago)
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Chris Williamson (Derby North) (Lab)
It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing this important debate. We have heard some heartrending accounts from hon. Members about the impact of PKU on their constituents.
My constituent, Denise Clayton, whose family I have known for 30 years, has lived with PKU for nearly 70 years, so she was born long before any real screening programme was in place. Consequently, she did not receive the required treatment, and the treatment she did receive was too little, too late to avoid neurotoxicity. Her family have done everything they could to support Denise. A few weeks ago, I spoke to her father, Norman, who recounted some of the traumas and difficulties that they experienced down the years. His view was that nothing could be done for Denise, but it seems that a treatment is now available.
I join hon. Members in their pleas with the Minister to use his good offices to ensure that the new life-changing drug Kuvan is made available so that the sufferers of PKU in the UK—like sufferers in other countries—can obtain the benefits of it and lead something approaching a normal life. Let us remember that we live in a wealthy nation; we are the sixth-biggest economy in the world.
PKU is a very rare condition that affects only a very few people in total across the country. The cost of the drug would be minimal in comparison to the life-changing impact it could bring about for young people—our fellow citizens. I plead with the Minister to listen to the impassioned pleas we have heard from Members today. He should use his good offices to ensure that the drug is made available so that we can change the lives of so many young people in our country who are suffering from this terrible condition.
Mr Laurence Robertson (in the Chair)
We now come to the wind-ups. I would like to leave two minutes for the mover of the motion to wind up at the end.