BIG PKU ANNOUNCEMENT!!! – PKU NEWS MEDIA RELEASE!

Posted on November 28, 2013March 21, 2014 by Amanda Horner

Ministry of Health

B.C. offers food subsidy for metabolic disorder patients
VICTORIA – Beginning Jan. 1, 2014, patients diagnosed with rare genetic disorders, such as phenylketonuria (PKU), will receive a monthly food subsidy of up to $250 to pay for low-protein foods, Health Minister Terry Lake announced today.
“Patients with PKU and related disorders will now have more support in managing their illnesses,” said Lake. “This food subsidy aims to ease some of the financial pressure associated with having PKU and help patients across British Columbia live longer, healthier lives.”
With about 209 patients being treated for metabolic disorders in B.C., the total cost of this support is expected to be $700,000 per year.
The Provincial Health Services Authority will manage the subsidy program and will continue to supply, free of charge, the metabolic formula that PKU patients need for proper body development. With this announcement, British Columbia joins eight other provinces in providing people with PKU financial assistance for low-protein foods.
“This is fabulous news for the B.C. PKU community,” said Amanda Cosburn, a PKU patient and advocate. “I am thrilled that our voices were heard, and although the journey is not over, this will help many people. I am very excited as this will help me obtain the quality of life and health that I deserve, and will also make my dream of being a mother a possibility. I am so grateful to Health Minister Terry Lake and Canadian PKU & Allied Disorders Inc., as well as all the PKU advocates who have worked so hard to make this a reality.”
“We are thrilled the Ministry of Health will provide access to one more medically necessary treatment for PKU, which will improve the health outcomes of many patients,” said Nicole Pallone, vice-president of Canadian PKU and Allied Disorders Inc. “This is the biggest enhancement to the health care of B.C. PKU patients since the implementation of the newborn screening program back in 1964, and will allow patients to better protect their brains from damage. I sincerely thank Ministers Terry Lake, Bill Bennett and Steve Thomson for their continued support, as well as everyone who joined CanPKU in advocating for this necessary treatment.”
People with PKU and related disorders cannot break down the amino acid phenylalanine, which is a component of protein. They are therefore unable to eat foods such as meat, chicken, fish, eggs, nuts and dairy products.
Specially modified, low-protein breads, pastas and other foods, along with fruits and
vegetables, make up the diet of a metabolic disorder patient. These modified foods can be very
expensive.
If not screened for and properly managed from birth, PKU and related disorders can cause
severe intellectual disabilities and restrict brain development. B.C. screens every child for PKU
right after birth to lower the risks of the condition.

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Protein as Pain- By Dale Bass in “Kamloops this week newspaper”

Posted on October 26, 2013March 21, 2014 by Amanda Horner

PROTEIN AS PAIN

Posted by: Dale Bass in Lifestyles 3 days ago 0 63 Views

Amanda Cosburn had scrambled eggs recently.

At age 27, it was the first time she had ever had them but, given their expense, it won’t be happening often.

Cosburn has phenylketonuria (PKU), a long name for the disease that is screened for in newborns with a poke into their heel and a blood test. Most tests come back negative hers didn’t.

“It takes two weeks to get the results and, when they got mine, they called my mother and told her I was mentally retarded and to take me to B.C. Children’s Hospital right away.

“My mom was only 20 years old and she was met at the hospital by this whole team of doctors.”

There, Cosburn’s parents learned the truth she has lived with. PKU is a genetic disorder that can be managed but not cured.

Boiled down to the simplest explanation of what is a complex biological process in the body, people with PKU must limit their intake of protein. That means no meat, dairy, seafood, legumes soy or tofu. Fruits and vegetables are okay, depending on how they are processed.

The bodies of people with PKU cannot handle phenylalaline, an amino acid found in foods that can be toxic to the brain and lead to a variety of conditions.

Treatment involves a special liquid formula, which Cosburn drinks throughout the day, and a restricted diet. Prepared foods for people with PKU are available but are expensive a box of nine small pizza balls costs $24 while a bag with nine tiny bagels costs $19, for example.

Specially prepared pasta in a bag not bigger than what most people might buy at their grocery store, costs $9 and a baking mix Cosburn relies on to prepare food each week is $55.

A third prong in the treatment is a drug called Kuvan, one that was approved by Health Canada in 2013, by the U.S. Food and Drug Administration even earlier and available in Ontario, Saskatchewan and Quebec but not B.C.

“This is really confusing for me,” Cosburn said, “We’ve been told research has not been proven but B.C. gets the same information as other provinces that have approved it.”

Cosburn has spoken with her MLA, Health Minister Terry Lake, and she said he’s been sympathetic to her issue.

When contacted by KTW, Lake’s ministry office in Victoria emailed his response.

It noted the province relies on the Canadian Agency for Drugs and Technologies in Health and the B.C. Drug Benefit Council when making decisions on drugs to approve.

The ministry, after receiving input from the two bodies “recommended against provinces covering this drug because of unclear benefits and high drug costs. The annual cost per patient for the medication can be as much as $180,000 per year for an adult, depending on dosing and the patient’s weight, and the available clinical research does not show clear benefits,” the email noted.

Access to the drug would make life easier for her and reduce her food costs, Cosburn said. And, it might go a long way to helping her with her dream of having a child of her own.

To do so, living with PKU, would require monitoring the presence of the amino in her body, keeping it to a level best described as a one or two for six months before conception, during a pregnancy and during nursing.

Given the unpredictability of conception, in essence it means keeping the level that low all the time, something that isn’t easy to do. Often, particularly when she hasn’t enough money to pay for the prepared foods, that level rises to anywhere from eight to 11 in Cosburn’s body, she said.

And, she’s aware she runs the risk of giving birth to a child with PKU.

Cosburn’s childhood was difficult. She was removed from physical-education classes permanently in Grade 6 because of fear muscle development would elevate the level of protein in her body and raise the amino level.

Lunch was four crackers with some jam, some applesauce and a thermos of the formula she lives on.

To go to a restaurant with her partner, Cole Rickett, requires calling ahead of time to ensure the few foods she can eat are prepared properly and, even then, she tends to simply order mashed potatoes and grilled vegetables.

Even then, however, she has to order child-sized portions because the more food, the greater the presence of proteins.

One large potato, for example, can have eight grams of protein and Cosburn needs to restrict her entire daily protein intake to no more than five grams. Anything more than one-quarter cup of corn also exceeds her protein -consumption limit for the day.

She’s speaking out for many reasons. She wants the government to approve the drug and she wants people to see that it is possible, although expensive, to live a healthy life with PKU.

She’s speaking out because she spent many of her teen years in hospital because she didn’t stick to the diet and she wants young people with PKU to understand how important it is to stick to the rules.

But, in the end, she’s speaking out because of a moment during her nursing studies in Vancouver when she discovered the only exposure she and her classmates would receive on the disease was one paragraph in a textbook.

“I was mad when I saw that. That wasn’t good enough for me. So I did a report on it for the class and decided I had to keep speaking out

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My letter to the editor of Kamloops daily news.

Posted on September 30, 2013March 21, 2014 by Amanda Horner

This letter appears in today’s paper for September 30th. I really hope to have a live interview with kamloops daily news in the future!

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Kamloops Daily News- from september 20th 2013

Posted on September 30, 2013March 21, 2014 by Amanda Horner

Here is the article that appeared in the daily news last week. I wanted to share this with my followers as I felt it has some very good points. However I wanted to let you know, I was not interviewed for this article and the quotes where taken from my blog. Some taking out of context. My pain that I spoke about, I do not feel is because of my PKU. To be clear, the chronic pain I feel in my back and sciatica nerve damage is from a car accident in 2008. I was struck by a car while I was walking my bike to a cross walk. It left me with permanent damage. I have numbing from my waist down, through my left leg and into my left foot. I also have a preferated disk at l5-s1. With chronic pain and fibromylgia. I was told my pain would never go away fully and that I would have to give up my nursing career. The pain took over my life and ran my life for many years. Over the past year I have fought hard to re gain control of my life and heal more fully. I feel like I have come along way but some days are harder than others. This last month was particularly hard, as well as the summer with working many more hours than my body is use to and adjusting to different shifts specially the night line. I also didn’t keep up with my treatments and physical activities. It was hard to stay on track while trying to focus on my levels and maintaining my phe levels while working nights and being tired all the time. I am however starting back on track over the past few weeks and the pain is slowly getting better again. For my pain I take gabpentin daily, and for breakthrough pain i take tramadol, and Motrin. My doses use to be quit high but over the last year i was able to cut them sometimes lower by half, however they have crept back up, and would like to lower my doses again and am making that my goal.

In response to the article in the kamloops daily news, I wrote a letter to the editor. I am very grateful to the kamloops daily news for taking the time to publish my story and really hope to do a live interview with them in the future to really have my voice heard and my message to be clear.

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Kamloops Walk for PKU

Posted on June 1, 2013March 21, 2014 by Amanda Horner

To day Canadian PKU and allied Disorders INC held there national walk a thon, to raise donations and awareness for PKU. Though we do not have any final numbers yet, The Kamloops Walk for PKU was a success. We had 30 attendees and rasied $420.00 dollars. The event started at 1 pm and was over by 3 pm. We met on the field by the park and picnic tables. At 1 pm, our local MLA Terry Lake arrived to talk to families and PKU patients. He also stayed for a group photo and gave a small speech to set us off on our walk. Once everyone had arrived, signed in and signed the petition, we began our 42 minute walk along the Westsyde parks Dike. Our gravel trail to the stairs at westsyde road and back was quiet comfortable and scenic and followed the swollen river.

After our walk we met back at the picnic area to socialize and have some low protein lunch of fruits, veggies, apple chips, juice, veggie thin crackers low protein cookies, and low protein donuts!

Everyone had fun playing at the park on the Jungle Gym and the swings. The weather held at a balmy and some what gray 23 degrees. Perfect for walking with a slight breeze along the river.

I met some new faces and we had 6 PKU patients attend. Myself and PKU Adult Katie, whom I just met today after we got in touch over the telephone last night. We are the same age and have never met . We also attend the same clinic and have the same dieticians!!

Then there was Hayden ( 5 years old) Austin ( 22 months old) and 2 school age boys! ( 1 was playing in a soccer game being held across from our walk!)

I handed out our PKU awareness t-shirts with there powerful message “Worst to first”, some recipe books, pku tool kit journals, and some pamphlets for Custom PKU Jewellery!

Between Cole and I we took 50 photos and it seemed to be a really good day and well received. Earlier when Cole and I where out at Save on foods getting last minute things for the walk, we where wearing out T-Shirts and people stopped and asked us what PKU was. I had fun explaining of course. Always like an opportunity to educate someone else.

Oh! and as well, our Pennies for PKU drive was a big hit too! We filled our cambrooke foods mixqucik baking mix container. So now I just have to count and roll it LOL.

However for tonight. I am going to sit back , relax and enjoy my evening with cole. Tomorrow I will finish up the paper work and finalize the walk a thon.

I was so anxious and nervous last night I could not sleep so I have been up since 5 am. Luckily I have been given the weekend off! back to work Monday!

Have a good night everyone! Thanks for reading :)

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Kamloops Walk for PKU , part 2

Posted on March 25, 2013March 21, 2014 by Amanda Horner

Hi everyone, Just wanted to let you all know that On June 1st, Canadian PKU and allied Disorders is hosting a national walkathon for PKU, I am co- organizing The ” Kamloops Walk for PKU” @ Westysde park from 1 pm till 5 pm.

I would really love to see you there. This cause is so important to me.

We have 2 goals for this walk.

1.To raise awareness for PKU and show the community that we are strong, connected and ready to fight for the access to all forms of treatment and care that we need.

2.To raise funds for CanPKU so that our organization can continue to host quality education events in all five regions of the country each year, support families living with PKU and allied disorders and advocate for the care and coverage needs in each province.

Your support would mean so much to me to have you there. I really hope you can join Cole and I . There will be a picnic lunch and a Pennies for PKU Penny drive. We are also looking for volunteers for Face Painting.

If you are interested in attending , please register at the link attached. Registration is free, its just we have numbers and in case we need to contact anyone!

Thank you so much from the bottom of my heart !

Amanda Cosburn

https://events.r20.constantcontact.com/register/eventReg?llr=7wfkgteab&oeidk=a07e71m20g0057e9ae2

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Kamloops Walk for PKU

Posted on March 18, 2013March 21, 2014 by Amanda Horner

This year on June 1st , Canadian PKU And Allied Disorders are hosting a national walk for PKU. I am working with Kyla and Brienna on organizing the walk here in Kamloops. The Kamloops Walk For PKU will be on June 1st , (just like all the other city’s and provinces. ) at 1 pm in the WestSyde Centennial Park. We will be walking along the dunes by the River. We will also be having tents, a picnic lunch, Pennies for PKU drive, door prizes and more. The walk is officially over at 5 pm. Registration will be on http://www.canpku.org soon. I have also created an event page on facebook for members to share with friends and family.

Our goal is to raise 20,000 dollars Canada Wide . We will have pledge forms available and will be accepting donations However please remember CanPKU is not a charity and cannot offer tax receipts The funds raised will be uses so that our CanPKU can continue to host quality education events in all five regions of the country each year, support families living with PKU and allied disorders as well as , advocate for the care and coverage needs in each province.

So far we have walks being held in :

BC:
– Kamloops
– Sparwood
– Vancouver

Ontario:
– London

Alberta:

Saskatchewan:

Manitoba:

Quebec:

Newfoundland and Labrador:

New Brunswick:

Nova Scotia:

PEI:

Yukon:

Northwest Territories:

Nunavut:

If you do not see your city on the list , and are interested in hosting a walk for PKU please contact CanPKU or visit the link : http://www.canpku.org/walkathon for more information I understand that organizing a walk is intimidating but CanPKU is very supportive and helps you along the way. I personally have hosted a walk on my own before in 2008 and am available to answer any questions you might have . Of course we are always looking for volunteers and walkers!

I am looking for volunteers for face painting and set up and tear down.

I am really looking forward to this event and hope that you are to. I look forward to seeing you there!

Best Wishes,

Amanda C

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