TO SIGN, PLEASE GO TO: PETITION.PARLIAMENT. UK/PETITIONS/300034
the signatures that will force a Westminster Hall debate on the PKU drugs scandal.
Mum Kate Learoyd has fought for years for Kuvan on the NHS, after her son Alex, 11, took the drug via a trial.
Kate, 46, of Holt, Wiltshire, who launched the petition, said: “PKU is a rare disease which has been ignored for too long.
“We started this petition to demand access to Kuvan – which is used across Europe already.
“We need many more signatures and we hope the kind-hearted Daily Express readers will take a moment to imagine our long struggle and sign our petition.
“Let’s get the government sort this out now.
“Eleven years is a farce. Adults and children need Kuvan now.”
Last October, BioMarin quit the NHS drug appraisal process overseen by The National Institute for Health and Care Excellence (NICE) having failed to reach agreement on terms.
This week we confirmed the company is re-engaging with NICE again, despite its reservations over how NICE values “orphan” drugs for rare diseases.
Campaigner Caroline Graham, of Godalming, Surrey, is mother to PKU siblings Holly, 23, and Callum Graham, 26.
She said: “We’ve battled this unfair situation alone for a long time and we’ve made no progress.
“The Daily Express is determined to see this through to the end and is in our corner. to
Now we need their incredible readers’ help. Please help us by signing and sharing this petition.
“We are so grateful to the Daily Express for shining a light on this injustice.
“Kate and I spoke to [Health Secretary] Matt Hancock in January and he said Kuvan was on his agenda. Let’s see if that is true.”
Mum Leanne Barnett has twin two-and-a-half year-old girls with PKU. Sisters Olivia and Ruby were born via IVF after Leanne, 43, and husband Peter, 55, tried for 17 years to have children.
Yesterday, Leanne, of Kingswood, South Gloucs, told us: “Both my twin girls need Kuvan. It would transform their lives.
“I hope the Government will listen to families like mine. Thank you to all the Daily Express readers behind our campaign.”
Kuvan costs around £45,000 per adult, per year and £4,000 for a
child, although the NHS seek a significant discount.
Last year BioMarin made £358million in Kuvan sales alone.
This week, just days into our campaign, BioMarin told the Daily Express it is ready to re-engage with the NICE drug appraisal process again.
BioMarin told us: “BioMarin is pleased the Daily Express is supporting calls for Kuvan to be made available to people with
would
PKU in the UK.We are proceeding with NICE’s process in the hope of achieving reimbursement.
“However, we are concerned this is likely to result in a negative decision due to the extremely restrictive thresholds within the process.”
A NICE spokesperson said: “We look forward to working with BioMarin (to) establish whether the drug should be made routinely available.”