Approximately 1 in 10,000 people in the UK have Phenylketonuria (PKU), a genetic, lifelong condition where the body lacks the enzyme required to break down phenylalanine, an essential amino acid that is present in all food. 

The current treatment for PKU is dietary, with sufferers required to live on a severely protein restricted diet in order to avoid damage to the brain. In addition to the diet, all PKU patients must take a phenylalanine amino acid formula to provide them with enough protein, vitamins and minerals for normal growth, development and bodily functions. If the formula is not taken then patients are likely to develop vitamin and mineral deficiencies and experience other side effects. The protein in the formulas currently available in the UK are not whole protein sources and are not as easily processed by the body as protein, vitamins and minerals from dietary sources that typically cannot be taken in the PKU diet. They are very acidic, have poor palatability and often lead to a range of side effects. Many patients struggle to take the formula, citing poor taste, stomach ache/ongoing gut problems, foul breath, nausea and upset stomach as just some of the reasons. For many teens an adults, an aversion to the formulas used in the UK to treat PKU can be a catalyst for them to stop adherence to the PKU diet. This can lead to a range of symptoms, including, but not limited to, seizures, depression, anxiety, motor issues, processing problems, headaches, extreme fatigue, a general overall lack of wellness etc, placing greater pressure on the NHS.

Cambrooke Theraputics in the US has developed a range of formulas based on Glycomacropeptide - a whole protein that is extremely low in phenylalanine. We have heard that Cambrooke is currently seeking approval for their Glytactin GMP formulas for use for the treatment of Phenylketonuria in the UK and we wish to express our support for their application, and to show our desire to have these products made available to us for use. It should be noted that Cambrooke's Glytactin GMP formulas are widely used in the treatment of PKU across the world in Canada, United States of America, various European countries and Australia (this list is not exhaustive).

Formula based on GMP rather than man made amino acids have much greater benefits to our health including

• Superior palatability (both taste and texture)
• Close to neutral pH - far more gentle on the stomach
• A natural source of protein means it is more easily utilised by the body, leading to less fluctuations in blood phenylalanine levels
• Less fatigue
• It is thought that there is less of a negative impact on the bones. People with PKU are prone to osteoporosis, and it is believed that part of this is due to the acidic nature of the formula.
• Studies have shown that natural intact proteins, like GMP, have a slower absorption rate in the body and an improved protein usage when compared with single amino acids, which mimic whole intact protein.

Please approve Cambrooke Therapeutics' application and make Bettermilk, Glytactin RTD, Restore, Restore Lite, Complete Bars and all other Glytactin products available for use in the UK.