A HAMPSHIRE man is fighting the NHS for access to a potentially life-changing drug.

Patrick Taylor from Hedge End suffers from the most severe form of a rare lifelong condition called Classical Phenylketonuria (PKU).

The condition means Patrick’s body is unable to break down the amino acid Phenylalanine, which is found in many foods and used by your body to produce proteins.

The 40-year-old can only eat nine grams of natural protein a day – the equivalent of a glass of milk.

The only treatment available in the UK for PKU is dietary therapy, which is an extremely restrictive and regimented low protein diet, lacking most foods that the general population takes for granted.

Failure to adhere to the diet can result in severe seizures, severe anxiety and depression, nerve damage and a host of other devastating neurological and functioning consequences.

He said: “Having Classical PKU is a daily struggle in order to achieve the right balance between getting enough calories and having adequate protein. I have to always take a supplement to provide me with sufficient vitamins, minerals and amino acids otherwise I would become deficient and suffer ill health.

“Adhering to such a strict low protein diet and tracking your protein daily makes you feel very stressed and anxious.”

Now, Patrick is joining the fight to help get affordable access to a potentially life-changing drug called kuvan.

Kuvan, a drug produced by BioMarin, works to lower the blood phenylalanine concentrations in those who respond to it, and in some cases has even rendered the restrictive diet unnecessary.

PKU sufferers in the UK are battling with the NHS and BioMarin, urging them to come to an agreement for the drug to be funded through the NHS.

A petition started by a small group of patient-led activists asking BioMarin to lower the price of kuvan has now got more than 13,000 signatures.

Patrick added: “The PKU diet is so restrictive that most people cannot cope with the rigors and burden of the diet, and struggle to adhere beyond adolescence.

Patrick added: “We have been let down, and the UK now has one of the poorest standards of care for Phenylketonuria in the whole of Europe.

“I feel I would benefit from the drug Kuvan because it would mean I would be able to eat a less restricted diet and eat a more variety of foods high in protein. Being on a low protein diet limits your choices of foods you can eat.”

An NHS England spokesperson said: “The NHS does not offer a blank cheque to pharmaceutical companies, instead the NHS works hard to strike deals which give people access to the most clinically effective and innovative medicines, and at a price which is fair and affordable, which is exactly what our patients and the country’s taxpayers would expect us to do.”