Sunday 25 March 2018

What is wrong with aspartme? The Sugar Tax and PKUs

First of all let me make my stance on the Sugar Tax clear. I personally, am all for it as I believe there is too much sugar in our diet, it is a luxury and obesity is one of the biggest killers next to smoking, so if we can do anything to reduce our sugar content I think this a good thing.

So far the tactics for the Sugar Tax have been to reduce bottle size and increase prices. Another big change for the Sugar Tax has also been to change full fat sugar drinks to contain aspartame (even though there are many diet alternatives with aspartme available). Aspartame is a sweetener that has no adverse effects on the 'normal' population. There are suggestions and scare stories that it has been the cause of cancers and seizers etc. but these are still yet to be proven true. However a small percentage of the population is directly affected by aspartame and that is people with Phenylketonuria (PKU). 

People with PKU cannot break down the amino acid phenylalanine and aspartame is an ingredient of this amino acid so it is pretty much poison to us. If you look on the back of any diet drink or drinks like Fanta and now Sprite you will see there is a statement contains a source of phenylalanine. This is a warning purely for the PKU population! I found this quote from the food standards agency website.

"Sufferers are normally diagnosed shortly after birth by a routine blood test and need to follow a very strict diet in order to limit their intake of phenylalanine, which is a normal constituent of proteins in food. Since aspartame is also a source of phenylalanine, all food products containing aspartame are clearly labelled to indicate the presence of phenylalanine so that those people who suffer from PKU can avoid consuming these products. This labelling is a legal requirement."

PKU's have a very limited diet when it comes to every day food, it means you cannot have high amounts of protein, even a slice of bread is considered too high for some classical PKU's such as myself. This means when we go into a restaurant even the Vegan and vegetarian options cannot be consumed as they often have cheese, eggs or lentils. Sometimes the only thing we can chose from a menu of 30 items are sides such as chips or jacket potatoes. So you can understand PKU's fustration when they wake in the morning to learn that Sprite or Dr Pepper has now changed their recipe to include aspartme. Meaning they cannot have their favourite drink as a treat or now when they go out for a nice meal, not only do they have to check their food, they will have to check their drinks.

There is also talk of people being charged extra to have bottomless drinks in full fat, so this means PKU's have to pay more for a fizzy drink that doesn't poison them. Even though there would also be alternatives for 'normal' people such as Pepsi Max, 7up free, Coke Zero instead, we cannot have any of these.

To adult PKU's this is another no when they are struggling to find variety in an already restrictive diet and to parents of children with PKU, this is another no that their children struggle to understand.

In the UK supermarkets such as Tesco, ASDA and Sainsbury's they all now have diet drinks that do not contain aspartme and do not contain sugar but contains sweetners such a Stevia, Acesulfame K or Sucralose. If these countrywide companies can do this why can't worldwide companies Coca-Cola & Pepsi do it too?

I believe the main argument for most  who are against the sugar tax is that they are adults who can make their own choices for themselves and their children on how much sugar they consume. With the rise of aspartme drinks this means even more choice is being taken away from PKU's and there are no alternatives.

I think what the sugar tax should be doing is reducing not replacing. If you are going to replace, use a sweetener that doesn't require a warning label on it. Clearly they are aware that PKU's are out there yet they are still using a aspartme.

I've created a list of soft drinks, these include drinks PKU's can have, can't have and used to be able to have but now cannot, this is to show the lack of choices and variety we have. I'm sure I've missed some off but at the moment there is a total 14 drinks we can't have.
There is 11 drinks we cant have, 3 drinks n the used to have and only 6 on my list that we can have, in the list of drinks we can have there is only one diet alternative drink which is Coke Life. Also, since looking further into this, it turns out Irn-Bru and Lucozade used to be drinks that what were available to PKU and now no longer have.

As said in the beginning, I am fully behind the sugar tax but we need to REDUCE NOT REPLACE.
If they want to replace, big soft drinks companies NEED to find alternatives to aspartme.
ALTERNATIVES are out there, and just spending a little bit more extra money to use them means us PKU's can enjoy our favourite drinks.
We are writing to our MP's, we are raising issues with parliament but we need more people to get behind us, to raise awareness so our quality of life can improve. All we want is to be able to have the variety and choices in drinks just like everyone else. PKU is a hard, life long, restrictive diet with no cure. Even though all this seems like one less full fat drink on a supermakert shelf, the taking away of such small simple pleasures; such as a favourite fizzy drink really does make a huge impact on a PKU's emotional and mental wellbeing. 


Please share this, and thank you for listening.