Selston mum-to-be with rare condition campaigns for wonder drug to be available on NHS

A Selston mum to be who has to weigh all of her food is campaigning for a life-altering drug to be made available on the NHS.

Thursday, 25th April 2019, 11:36 am
Updated Thursday, 25th April 2019, 11:39 am
Lucy Dawson was diagnosed with rare lifelong condition Phenylketonuria (PKU) as a newborn.
Lucy Dawson was diagnosed with rare lifelong condition Phenylketonuria (PKU) as a newborn.

Lucy Dawson was diagnosed with rare lifelong condition Phenylketonuria (PKU) as a newborn. The condition means the 33 year old can only eat six grams of protein a day - the equivalent of one egg or one and a half slices of bread.The only way Lucy can control her PKU is though a severely restricted diet of prescription foods.

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If Lucy eats normally, protein would accumulate in her blood in dangerous concentrations.Lucy said: “It was really difficult to control my diet as a child - eating the wrong thing could have caused brain damage, so I had to be very strict.

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Lucy Dawson was diagnosed with rare lifelong condition Phenylketonuria (PKU) as a newborn.

"It's very stressful having to weigh and measure everything I eat. I can't go out for meals really - if I do I have to take scales."As Lucy is 19 weeks pregnant, she cannot eat any protein at all, and has to keep a closer eye on her diet than ever. “I have to be even more restrictive now, as PKU can affect my baby’s development.” She added.

"If I wasn't so careful my baby could be born with skull or facial deformities."A drug is available that would free Lucy, and others with PKU, from the stress of such a strict diet - but it is not available on the NHS due to its cost. Kuvan, a drug produced by BioMarin, helps sufferers metabolise phenylalanine, an amino acid found in some proteins.

The drug allowed some sufferers who trialled the drug to live free from dietary restrictions. The NHS estimates that Kuvan could cost between £14,000 and £45,000 per patient per year. However for adults, the protein-restricted diet alone costs the NHS around £12,000 a year.A petition has on to lobby BioMarin to lower the cost of Kuvan has reached 14,250 signatures.

The creator of the petition, Barbara McGovern, wrote: "KUVAN has been available internationally for over 10 years. It is manufactured by the American company BioMarin who have already made significant profits from it.

"BioMarin has priced KUVAN at a level which the NHS has refused to pay. We are asking BioMarin to make a deal with the NHS. We have waited long enough - please let all the people in the UK who could benefit from this life changing drug finally enjoy a normal healthy life.Lucy says access to Kuvan would be life-changing for her. She said: “The diet is relentless, everyday we have to weigh and measure everything we eat. “I am currently pregnant and the diet becomes so much stricter as a result, as high levels have serious consequences for unborn babies.“I have to send three blood samples a week and my dietitian will contact me with the result and I will adapt my diet according to the results.“Morning sickness or a cold will cause my levels to increase, meaning I have spent most of this pregnancy on zero grams of protein a day, which has had a massive impact on my life and mental health. “Access to Kuvan could potentially have a huge impact on my quality of life.”“The PKU diet is so restrictive that most people cannot cope with the rigors of the diet, and struggle to adhere beyond adolescence.“We have been let down, and the UK now has one of the poorest standards of care for Phenylketonuria in the whole of Europe.”

Diagnosed through the newborn screening heel prick test, approximately 1 in 10,000 babies in the UK are born with PKU.

Research by the National Society for Phenylketonuria has found that care standards throughout the UK vary massively.

Dietary compliance becomes more challenging with age, and many carers of PKU patients struggle mentally with the burden of the diet, with many forced to give up work in order to care for their child.

You can sign the petition here