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Blaydon family's Christmas celebration after 'life-changing drug' made available for rare disorder

Blaydon family's Christmas celebration after 'life-changing drug' made available for rare disorder
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PKU sufferer's joy and anger as NHS gives wonder drug to children only

PKU sufferer's joy and anger as NHS gives wonder drug to children only
express.co.uk - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from express.co.uk Daily Mail and Mail on Sunday newspapers.

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NHS must approve drug to help sufferers of PKU – a rare genetic condition | UK | News

If BioMarin refuses to lower its price, they insist that NHSE negotiates a deal with cheaper generic drug makers instead.
Kuvan costs around £45,000 per adult per year, but as low as £4,000 for a toddler.
The NHS wants a significant discount for buying in bulk.
PKU sufferers must replace real protein with a foul-tasting synthetic and avoid meat, fish, eggs, pulses, dairy and some vegetables.
Kuvan regulates blood levels when a person with PKU eats tiny amounts of protein-rich foods, such as milk, cheese, nuts or meat.
The medicine, which could help 600 UK sufferers lead a normal life, has been available since 2009, but not on the NHS.

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