AS many of you know I am working with CanPKU and our wonderful team of advocates to encourage our BC Government to cover KUVAN and our low protein medical foods as they are medically necessary to all those with PKU.  We have submitted various material for their review including the brain protection strategy document that can be found on the CanPKU website.  in support of our other efforts, we have involved the media as well as some of us are collecting petition signatures.  We encourage all BC residents to sign , or download the petition from the CanPKU website and have your friends and family sign it. After anyone collects 100 signatures they can then be HAND delivered to your MLA to be read into parliament. you can collect more than 100 signatures but this is the minimum we are asking to collect before approaching an MLA. I am so not good at asking strangers and everyone I see to sign this and I have been struggling to  collect my goal of 100 signatures. So I decided to utilize my co workers! I wrote a letter to my co workers and posted it in our staff lounge, as well as our nurses station. I am happy to say I have begun collecting the signatures. I also posted spare copies for them to take home. Alot of my nursing co workers including the nurses aides ( RCAS/ HCAS) have taken them home or to school to help collect more signatures. I am so overwhelmed with there support and I know together we will make my goal! Then I can deliver them to my local MLA who also happens to be the BC Governments Health Minister ” Terry Lake! “So a big thank you to all my co workers and my friends !! 

I wanted to share on here, the letter I wrote to my co workers.  So here is what I wrote and posted in the lounges: 

Dear Fellow Co-Workers.

My Name is Amanda Cosburn. I am an LPN and have worked in the LCU for just over a year. I was born with a rare, genetic and metabolic disorder called PKU, Or Phenylketonuria. PKU has been screened at birth since 1967 on all babies born in Canada and America, as well as other countries around the world. It is that heal poke test!

PKU is a life long brain threatening disease, where people born with PKU are unable to break down the essential amino acid “Phenylalanine”. Phenylalanine or “PHE” is one of the 9 essential amino acids that make up protein. It is broken down in the body into tyrosine. However in people born with PKU, PHE cannot break it down. It instead accumulates abnormally in the blood and the brain. This accumulation causes a range of critical Neuro-Congnitve side effects. If left untreated it can lead to mental retardation. There is no cure for PKU. PKU is treated with a life long restricted low protein diet, which is a combination of an essential medical formula, fruits, vegetables and low protein foods. These low protein foods are a medical food, where they are chemically altered not to have PHE in them. Essentially some one like with me, who has PKU must weigh and measure everything they eat, and count the grams of protein. For Example, my tolerance of protein is 5 grams of protein A DAY! Treatment also includes measuring the amount of   PHE in my blood. I test my blood similar to a diabetic, by pricking my finger.and applying the blood to a filter paper, let it dry and mail it to BC children’s hospital in Vancouver for testing.  To maintain healthy blood levels and to protect my brain, I rely heavily on my medical formula and low protein medical food. I could not manage my PKU without them. Or have the quality of life patients like me deserve.  Unfortunately, these foods are very expensive. (Example $9.00 for a box of pasta, or $55.00 dollars for a box of baking mix) I am lucky that the medical formula is covered by the government, but my medical foods are not. I spend sometimes $220.00 a month on top of my regular grocery bill. BC is currently the worst province in Canada to have PKU. Many provinces have some sort of coverage; Alberta and Ontario have unrestricted coverage of the low protein foods.

After a long 2 year battle and with the appointing of our new Health Minster and PKU Supporter, Kamloops Local Terry Lake we are hopeful that we are on the right path and have decided to issue a petition to our government supporting the coverage of all PKU treatments. I am asking today for your help, because not many people know what PKU is and because it is so rare, our voices are small.Alone we are rare, but together we are strong. Please show your support by signing the attached petition. My goal is 100 signatures. I will be collecting the petitions on September 26^th to take with me when I travel to my home town of Victoria BC, where I will submit the signatures to Terry Lake, to be read into parliament.

I thank you in advance for your support. Your signature will be helping improve the quality of life for the 170 BC patients like me, living with PKU. For more information on PKU please feel free to view my blog about my life with PKU at www.pkuamanda.com

Yours Truly, Amanda Cosburn LPN