Phenylketonuria: Treatment and Support Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Jim Cunningham
Main Page: Jim Cunningham (Labour - Coventry South)Department Debates - View all Jim Cunningham's debates with the Department of Health and Social Care
Phenylketonuria: Treatment and Support
Jim Cunningham Excerpts(6 years, 5 months ago)
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Liz Twist
I agree; it is important to look at the question in the round.
Many parents find that they need to give up work or reduce their hours to maintain their child’s diet and keep them healthy. At the end of last year, the NSPKU produced a booklet and video, “Patient Voices: Listening to the experience of people living with PKU”, which clearly and movingly sets out the practical and psychological impact of the condition on individuals.
Mr Jim Cunningham (Coventry South) (Lab)
I congratulate my hon. Friend on getting the time for a debate on the issue; not enough is known about it. It strikes me, as I listen to her, that a child with PKU is a prisoner of their body, in a way, and so are their parents, because of the regimented way they must deal with the child’s needs. Does she agree?
Liz Twist
I most certainly agree that it places an incredible strain on parents, who must live with that all the time. I recommend the “Patient Voices” booklet and video to anyone who has not already seen them.
In this debate, I will highlight very specific concerns about treatment and support for PKU. The first is the issue of access to a drug treatment, sapropterin, which is thankfully more commonly known as Kuvan. Although it is available in 25 countries across Europe, and was licensed for marketing over 10 years ago in the European Union, Kuvan is not available to people with PKU in the UK.