Kuvan, which is used to treat phenylketonuria (PKU) – a condition which can cause brain damage in sufferers who do not follow a strict dietary regime – was blocked in the UK due to its cost. But now US firm BioMarin has lost its exclusive EU patent – allowing rivals to enter the market with cheaper generic versions of the drug from December. Kate Learoyd, 46, mum of PKU son Alex, 12, said: “I hope this patent decision will finally mean the NHS gets a deal which will change lives.
“BioMarin has made hundreds of millions of pounds from selling Kuvan around the world, while British PKU patients have had no treatment.”
Kuvan regulates blood levels when a person with PKU eats tiny amounts of protein-rich foods, such as milk, cheese, nuts or meat.
In the UK a year’s supply for an adult would cost about £45,000 and £4,000 for a child, but in Turkey – where no patents exist – it is sold at a third of the price.
The news has boosted the Daily Express’s campaign for an NHS deal which Prime Minister Boris Johnson backed last week after being moved by the plight of a teenage PKU sufferer.
Willow just wants to enjoy the same food as her sister
Little Willow Hodder does not understand why she cannot have the same food as her big sister – but PKU means the two-year-old can only eat 3g of protein a day.
Mum Chelsea Glover said the “guilt” of trying to disguise Willow’s meals to look the same as those enjoyed by eldest daughter Grace, six, was getting to her.
The 27-year-old said: “She’s already noticing her meals are different to Grace’s and even though we try and make them look similar in reality they are not.
“Willow will bring us crisps, yoghurts and drinks out of the kitchen and we have to tell her: ‘No you’re not allowed them’.
“She doesn’t understand why she can’t have them, and the guilt is starting to set in for me.
“Imagine being in a world where what you eat could potentially give you brain damage? Well, this is the reality for people living with PKU.” Call centre worker Chelsea said Willow has never had a healthy appetite and was admitted to hospital three times as a baby as she could not keep anything down.
Now she and partner Stewart, 30, who also has PKU, have to measure and control every morsel their daughter eats which can be “frustrating” when Willow turns her nose up at a meal. Chelsea of Bromborough, Merseyside, added: “I’m then stuck and panicking about what else I can give her.
“I can’t just pop to the shops and buy her alternative foods.
“Kuvan has been on the market for 11 years now and I’m gutted that it isn’t available for Willow.
“[Regulator] NICE and BioMarin need to come to an agreement to make this affordable on the NHS. It’s baffling that it hasn’t happened already.”