Boris vows to look at NHS drug ban after teen’s plea
THE NHS’s 11-year refusal to buy a miracle drug is to be looked at by Boris Johnson after being moved by a teenage sufferer’s letter.
During the general election the Prime Minister promised to “do his utmost” to help those with genetic condition PKU get life-changing medicine Kuvan.
Six months later, 19-yearold Lily Wood wrote to the PM to ask why she and others in agony are still waiting.
And he was so stirred by her words he rang her family promising to see how the NHS can reach an accord with drug firm BioMarin.
Lily’s uncle Graham Anstiss, 47 – one of Mr Johnson’s constituents – revealed the PM rang him on Friday.
Mr Anstiss told the Daily Express, which has campaigned for the drug to be available: “I was bowled over by how genuine, positive and concerned Mr Johnson was.
“He said he was really moved by Lily’s letter and will pursue the Kuvan situation.
“Mr Johnson said he could not promise to deliver Kuvan, as that was mainly an NHS decision, but admitted the case was overwhelming.”
Genetic condition Phenylketonuria, or PKU, forces sufferers to live on a restricted diet. Since 2009 US firm BioMarin’s drug – which could help 600 UK patients – has been approved for use but is not yet available.
Lily, of West Drayton, Middlesex, said in her letter how she had no choice about having PKU. Yet the NHS spends billions on obesity and smoking-related illnesses – but will not pay £4,000 a year to give a child Kuvan.
NHS England is expected to make a decision this month. But it will then depend on a final ruling by the National Institute for Health and Care Excellence.
Campaigner Kate Learoyd, 46, said: “The support of the Daily Express has meant a huge amount to us.”
A Government spokesperson said: “We’re determined to help all NHS patients access the latest treatments at a price that is fair to the NHS and the taxpayer.”