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Thanks Helen for the posting.  Some critical information was missing from
your post so I am replying to the whole list in my answer so everyone
understands the actual scope of this funding.  First of all, previous
funding already existed, for those on welfare, which was only $40 a month
and this is an increase targeted at this population to start.  Also the
funding is UP TO $250 a month, which is going to be income tested in order
to receive, just like other funding that we receive in BC such as Medical
Insurance premiums.

 

In the original press release - the funding is for "Medical Food" as people
diagnosed with PKU and Allied Disorders (metabolic) have a significant
amount of food (mostly protein related) that they CANNOT consume, which is
not possible to be manufactured, like happened over the last 20 years with
GF food, as the PKU population demand is so very small.   The amino acid
free, highly restrictive diet does not even come close to the gluten free
diet and what it takes to be one it - measuring how much food is consumed,
knowing the ingredients, different types of food and how they affect the
diet and then calculating how much of the medical food supplement they will
need.  Those diagnosed with PKU and Allied conditions must drink this
medical supplement (medical food) which does not have phe in it, for the
rest of their life, in order for their body to have the protein and energy
that it needs and at the same time, hopefully preventing brain damage and
death from their condition.  

 

While a Celiac can cheat and I know it is not medically suggested to do so,
but it does happen, those with PKU are not able to consume proteins at all
or they will have devastating consequences.  It is similar to a diabetic
consuming a lot of sugar without any insulin to assist their body. 

 

So unlike a Celiac, who through their Income Tax has the ability to claim
the cost of GF foods, this funding, if they qualify, provides more of an
immediate relief for those who have the PKU or similar metabolic disorders
giving them the ability to pay for it instead of waiting until their Income
Tax refund.  One CAN eat GF just fine WITHOUT purchasing GF ingredients -
there are plenty of natural food items available for us to eat that satisfy
all the food groups that a body needs, however someone with PKU is not that
lucky!

 

Here was the original press release
http://www.newswire.ca/en/story/1270317/patients-celebrate-b-c-s-decision-to
-fund-medical-foods-to-protect-against-brain-threatening-disease -

 

"Canadian PKU and Allied Disorders (CanPKU) is delighted with the B.C.
government's decision to provide funding for special low-protein medical
foods for patients affected by Phenylketonuria (PKU) and similar inborn
errors of metabolism (IEMs). Medical foods play a critical role in
preventing devastating neurocognitive, psychiatric and physical symptoms,
and in some cases even death, caused by PKU and 24 other rare, inborn
metabolic disorders. The foods are one of three medical components of
CanPKU's Comprehensive Brain Protection Strategy for People with PKU
submitted to the B.C. government in February 2013. 

 

In PKU, the body is unable to process an essential amino acid found in
dietary protein, called phenylalanine (or "Phe"), and the resulting
accumulation of Phe in the blood is toxic to the brain. If left untreated,
symptoms can range from mild cognitive impairment to severe mental
retardation. As such, patients must adhere every day of their lives to a
complicated and highly-restrictive low-protein diet to stave off Phe's
harmful impacts. Medical foods help PKU patients maintain their blood Phe
levels at acceptable levels, protecting their brains."

 

Lynda

Vancouver, BC


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