NHS is playing God with my Katie’s life
Mum’s legal fight after girl is denied ‘too costly’ drug
child who didn’t choose to have this condition. She just had the misfortune of being born with it.”
Peter Todd, a partner in her legal firm Hodge Jones & Allen, said: “Thousands of parents have been left in the dire position of seeing their children deteriorate with this condition – knowing there’s a drug that can help improve their health and extend their lives.”
NHS bosses have engaged in years of negotiations with Orkambi’s manufacturer Vertex Pharmaceuticals to secure an affordable deal. Health ministers this year wrote to the company urging it to drop the drug’s price, saying “time was of the essence” for cystic fibrosis patients.
The Department of Health said: “Vertex refused to accept an offer of about £500million over five years, so putting Orkambi out of reach for patients. We urge the firm to take it.” Vertex said it held a “productive meeting” with Nice last month and was “committed to continuing discussions”.
Nice said its guidance on Orkambi would be reviewed on receiving new data or a revised price. “We’re glad that Vertex has agreed to re-engage with us and NHS England,” it added.
Sarah said: “I hope we can win this legal battle, not just for Katie but also to make other young sufferers’ quality of life so much better.” THE mother of a girl aged six with a life-shortening disease is taking the NHS to court for denying her daughter a vital new drug.
Desperate Sarah Burgwin, 34, believes the treatment would save cystic fibrosis sufferer Katie Stafford from early death.
But medical chiefs have told her the £104,000-a-year cost is too high.
She said: “They’re playing God with my child’s life. What gives them the right?
“It’s heartbreaking to see Katie suffer when I know there is a drug out there that could help stop her torment.”
She has instructed a law firm to seek a judicial review of NHS England’s decision.
Clinical trials have shown the new drug Orkambi can improve lung function in victims of CF, which affects 10,000 Britons.
The National Institute for Health and Care Excellence TORMENT Katie with Sarah (Nice), which decides which treatments should be available on the NHS in England and
Wales, says the medication is so expensive it should only made available in exceptional circumstances.
But Sarah’s lawyers believe Katie is an exceptional case as her behavioural and learning difficulties prevent her being given alternative treatments.
“The NHS is putting a price on the life of my daughter,” said Sarah, of Totnes,
Devon. “It’s shameful. Katie is a helpless Cystic fibrosis sufferer Katie, six