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‘Stop passing the buck’ – MP blasts health authorities over not licensing vital drugs for people with Phenylketonuria

June 26, 2018 11:48 AM

Tim Farron Parliament Speech DEFRASouth Lakes MP Tim Farron has hit out over buck-passing between health authorities in Britain which is leading to a vital drug being denied for people with Phenylketonuria,

More commonly known as PKU, Phenylketonuria is a rare genetic metabolic disorder which greatly impacts on people's mental and physical wellbeing.

Around 6200 people in the UK are affected by the disease, including a family in Grange-Over-Sands.

Currently sapropterin dihydrochloride, otherwise knows as Kuvan is the only prescribed medication for the disease. But despite it being first licensed by the European Medical Association 10 years ago, and being available in 25 countries across Europe, the drug is still not available here in the UK.

Tim wrote to both NHS England and the National Institue for Health and Care Excellence (NICE), but both organisations said it was the other's responsibility to license the drug.

During a debate on access to treatment for PKU in Parliament this morning, Tim said the time had come for the buck-passing to end.

Tim said: "It's absolutely inexcusable that we are one of the only countries in Europe that are denying access to Kuvan.

"In effect, rather than a postcode lottery, people suffering from this condition are suffering from an international lottery and the country in which you reside dictates whether you will be able to access this transformative drug.

"For the sake of the all families who are struggling to manage with the disease, it's time for the buck-passing to stop and for Kuvan to be licensed."