PKU Awareness Day highlights the pressing need for accurate labelling

Today is International Phenylketonuria (PKU) Awareness Day, a day when the PKU community and its supporters come together to help raise awareness of this rare disease that affects one in 10,000 babies born in the UK. Caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine (protein), those with the condition need to follow a strict low-protein diet for life.

The free-from confectionery brand Freedom Confectionery asserts that more needs to be done when it comes to free-from food labelling to ensure consumers feel safe and confident in their purchases. It believes food brands must better consider those with conditions such as PKU and food allergies.

According to research led by Professor Anita MacDonald, Metabolic Dietician at Birmingham Children’s Hospital, over half (55 percent) of online protein product descriptions by supermarket food brands is misleading or inaccurate, making it potentially dangerous and incredibly challenging for customers with PKU to shop with confidence.

Freedom Confectionery, Europe’s first manufacturer of gelatine-free marshmallows, has announced it will be launching a PKU-friendly stamp, which will be introduced on its allergy-free mallow packaging later this year, to promote inclusion and to ensure that no child feels left out due to their dietary needs.

The Lancashire-based confectionery brand, which is the only brand in the world to produce 14 allergy-free marshmallow products, has partnered with the research lead Professor Anita MacDonald and the NSPKU, a UK charity set up to improve the lives of people living with PKU, to produce a standardised PKU-approved authentication stamp to help ease stress in the shopping experience for people and parents who have children with PKU. And they are encouraging other brands to do the same.

The Freedom Confectionery packaging will also include PKU protein conversions within its nutritional information, making it easier for parents to determine whether the product is safe for their children.

Elvin Willgrass, sales director at Freedom Confectionery said: “We’ve worked with Prof MacDonald and the PKU community for many years now and we’ve seen the joy marshmallows bring to children struggling with this condition day in, day out. We’ve also witnessed the challenges parents face when going to the supermarket. These families already have enough worry in their lives and should be able to rely on brands to provide them with the correct nutritional information. For many parents who have children with PKU shopping for food can literally be a life-or-death experience.

“The introduction of the PKU friendly stamp and the PKU protein conversion information is the first step in our mission to make food buying safe and easy for everyone, regardless of dietary needs. The fact that over half of supermarket food brands label incorrectly worries me…as there are thousands of people in the UK who rely on packaging to give them the right information and to reassure them that what they are buying is safe for them to eat. Natasha’s Law launches in October this year, which will help drive a change, but we also feel incredibly passionate about it and want do what we can to make the shopping process easier for those who already have enough stress in their lives,” he said.

The research, which was published in the academic journal, Nutrient, at the end of last year, revealed that “interpreting the protein content for some common supermarket foods available via online websites is inadequate, unclear and even misleading for people with PKU.” It also stated that “food regulations, manufacturers and online food business operators have not considered the impact of any inaccurate product information for people on very low-protein diets.”

For those living with PKU, eating even a small amount of extra protein can have serious health implications, so knowing how much protein is in the food they are buying, and eating, is paramount.

Prof Anita MacDonald works with numerous children and families with PKU at Birmingham’s Children’s Hospital and stresses the importance of correct labelling. She said: “For parents or people with PKU, walking into the supermarket is like navigating a minefield. Everything they choose for their children to eat must be checked and checked again to ensure it doesn’t contain high levels of protein; so incorrect labelling can have serious consequences for their children’s health. What Freedom Confectionery is doing is making it so much easier for these parents to shop, it will make a huge difference and I hope other brands will follow suit.