Saskatchewan follows Ontario’s lead in funding brain-protecting treatment;

B.C. continues to lag far behind

– Other provinces urged to provide Kuvan as an option to treat Phenylketonuria (PKU) –

Saskatoon, SK – September 17, 2013— Canadian PKU and Allied Disorders (CanPKU) is pleased to learn that Saskatchewan has joined Ontario as a province that has approved Kuvan (sapropterin dihydrochloride) for reimbursement through its public drug program. Now, patients in the remaining provinces are urging their elected members to follow their lead and fund Kuvan – the first and only Health Canada approved drug therapy^[i] for Phenylketonuria (PKU) – as an option to protect patients against this rare, brain-threatening inborn metabolic disorder.

“We are delighted that Saskatchewan has decided to fund Kuvan, joining Ontario as a province that trusts in the available evidence for this treatment and understands the importance of protecting patients’ brains from this devastating condition,” says Nicole Pallone, from Sparwood, B.C., who is vice president of CanPKU and mother to a five-year-old daughter with PKU. “We look forward to congratulating B.C. and the remaining provinces in the near future, as we are hopeful that they, too, will commit to raising the bar of PKU care to national, and international, standards and best practices.”

B.C. remains the worst province for PKU patients

While Saskatchewan agreed to cover Kuvan in September 2013, after Ontario led the way seven months prior, B.C. is the only provincial government to walk away from negotiations with the drug’s manufacturer. Over the past four years, over 20 meetings and phone calls have taken place between government officials and relentless CanPKU advocates, who continue to tirelessly pursue additional support to improve patient health outcomes.

B.C. remains the worst province in Canada for access to PKU treatments, as the only public funding that B.C. PKU patients receive is for special low-protein formula,^[ii] which has formed the basis of the complicated and highly-restrictive PKU diet for the past 50 years. ^[iii] All provinces, including Saskatchewan, provide at least some access to medical foods for PKU patients – a key treatment necessary to prevent devastating neurocognitive, psychiatric and physical symptoms caused by the disease. However, B.C. only provides the bare minimum of coverage for the medical foods necessary to manage PKU – a nominal $40 monthly stipend, available only to PKU patients on social assistance.ⁱⁱ

Question of inequity raised as Kuvan access varies across Canada

Depending on the province, patient access to publicly-funded treatment for PKU through provincial drug programs is varied – raising a question of inequity amongst PKU families across Canada. In addition to Ontario and Saskatchewan, the Quebec government funds Kuvan on a case-by-case basis for women with PKU in the province who are pregnant or plan to become pregnant.^[iv] 

“For anyone living with PKU, including adult patients who are hopeful mothers-to-be like me, it is extremely important that we have access to all available medications, such as Kuvan and medical foods,” says Amanda Cosburn, a nurse who lives in Kamloops with her partner, Cole. “We encourage the B.C. government to take note of how other provinces are supporting PKU patients and fund these essential treatment tools to ensure that the brains of adults, adolescents and children – including our unborn babies – are protected.”

Causing added concern and confusion for patients is that the B.C. government does fund Kuvan for two uses not indicated by Health Canada. The province funds Kuvan to treat BH4 deficiency (originally called malignant PKU), and as a diagnostic tool to determine whether newborns with high Phe levels have PKU or BH4 deficiency.

To date, Kuvan is publicly funded and accessible to patients with PKU around the world in countries such as Germany, France, Italy, Spain, Greece, Netherlands, Austria, Norway, Slovakia, Denmark, Belgium,^[v] the United States, Japan and Switzerland.

About PKU 
PKU (phenylketonuria) is a rare inherited, brain-threatening metabolic disorder, observed when the body is unable to process phenylalanine (“Phe”), an essential amino acid found in dietary protein. The resulting accumulation of Phe in the blood is toxic to the brain, and if left untreated, symptoms can range from mild cognitive impairment to severe mental retardation. Approximately 1 in 12,000 to 15,000 infants in Canada is born with PKU.  All provinces and territories, including B.C., offer newborn screening tests to determine if a child is born with PKU.  If PKU is detected, the appropriate treatment must be initiated immediately and maintained throughout life to ensure normal brain development.

About Canadian PKU and Allied Disorders Inc.
Canadian PKU and Allied Disorders Inc. is a non‐profit association of volunteers, dedicated to providing accurate news, information and support to families and professionals dealing with PKU and similar, rare, inherited metabolic disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. By allied disorders we mean other rare, inherited metabolic disorders also detected by newborn screening. For more information, visit www.canpku.org and download our comprehensive resource for patients and families, PKU and the Brain.

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For more information, please contact:

Beth Daniher
Cohn & Wolfe

416-924-5700 ext. 4070

beth.daniher@cohnwolfe.ca

For the past 2 days I have had the honour of attending an invite only, CanPKU advocacy seminar.

I am so very fortune for this opportunity and I have learnt so much. The seminar has been so informative and I have really learnt a lot. I really feel like I have taken away new knowledge and tools I can use to apply in our mission. We are so lucky to have had these professional consultants and experts to dedicate their time to us and to train us in media and government relations.

I have walked away from the seminar today feeling inspired and empowered.  For the first time in a very long time I am hopeful and excited for PKU. With the changes in the government and with our new health minister Terry Lake and deputy minister Steve Brown. I have hope and I am excited to work with this advocacy team. I really believe and feel this is the start to the end and we WILL make this happen.

I am currently in the truck right now on our way home to Kamloops , reflecting on the past few days and all that I have learnt. Taking it in an absorbing it. I had planned to take time, to plan out my blog post and then publish it when I got home. However, I have so much information swirling around in my brain that I cannot relax or focus on anything else. So I have pulled out my lap top, pillows and blanket and set up myself off line to write this down.

We had 3 Professional consulting teams at the event

Cohn and Wolf- Who work with media relations. We had work shops and roll playing on how to prepare for interviews, what to expect, What type of questions we may be asked and how to answer.  They taught us how to focus on 3 key messages and how best to get them across to the interviewer. Also what to say and what not to say.

Global Public affairs – They educated us on the Government, how it works,  what the rolls of the ministers are and the differences between politicians and beurocratics. They taught us about government relations and how to advocate in government efficiently.

Also we had the pleasure and expertise of Ryan from Advocacy solutions –  Who  educated us on being strong and efficient advocates, How to get our message out and how to speak or talk , to articulate and what language to use. Ryan worked with us on our personal stories and developing our messages.  Ryan even gave us homework!

Then of course we had Nicole Pallone, Vice president of CanPKU and John Adams President of CanPKU and our advocates. Including myself,  there was 3 PKU patients  ( 2 adults and 1 teenager) , Nicoles mother in law, 2 fathers, and 3 mothers

Our team has really grown since we started advocating 3 years ago.  Over the weekend we discussed our campaign in depth, what we are really asking for, the brain protection strategy plan in depth.  We exchanged information, experiences and debated issues, and topics on how to be best consistent and united in our cause.

I  learnt a lot of new information in the past few days that its a little overwhelming. I learnt new   facts regarding  treatments and new developments in PKU , as well as more details about our campaign.

This was our first sit down as a team and first face to face. We have had plenty of conference calls but all sitting down together like this around the conference table was amazing and valuable experience.

Since beginning this journey CanPKU has met with our government over 40 times. Only to have been told NO, to be ignored and to be disappointed.

BC really is the worst place to have PKU and our mission is to bring BC from worst to first!  Recently Ontario has approved KUVAN and is funding it,  they even have un restricted access to the medically necessary low protein  foods. It is not capped off or dependant on income.  It is unrestricted!!!

Saskatchewan is also close to signing a deal to approve KUVAN .  Joining many other countries around the world such as : France , Italy, Greece, and the Netherlands.  Just to name a few.

BC was offered the same price for these treatments at the “table” with Ontario and Saskatchewan,  and is the only province to walk away with a definite NO! Even with the same evidence, facts and education as the other provinces. Ontario and Saskatchewan had the same information and they made the completely different and right decision. It irks me that BC cannot do the same!

When Nicole and John have gone to parliament in Victoria to meet with legislation and discuss coverage of our medical foods and KUVAN they have been dismissed many times from MLAs and ministers who say that is not their legislation. Well in fact, we learnt that there is no one in the BC government who has legislation regarding medical foods.

The government has even gone as far to release statements in the media with wrong information and facts regarding KUVAN the cost and efficiency in the media. Stating is not government responsibility to cover food and that KUVAN is not proven to be efficient and too costly. KUVAN has been proven to be efficient in managing PKU, not only has it been approved by Health Canada but it is also being used and prescribed by doctors. In fact Doctors have spoken up in favour of KUVAN.

When it comes to our medical foods, the BC government has many different positions but they do not understand the fundamental differences between these medically necessary foods and “ foods” they hear the word food and automatically say no!

The Difference is these medically necessary foods are not regulated by the Canadian food inspection agency, who governs the foods you see in the grocery store. Our medical foods are regulated by Health Canada and are kept out of grocery stores because they are potentially dangerous to “normal” people.  We cannot just go out and buy these foods. They have to be ordered and imported into our distribution centers and then shipped to us.

What the government has not grasped is that regular food, and PHE is a neuro toxin to us. IT is poison!

This is the sole reasoning for our campaign and our efforts from getting BC from worst to first in PKU care. It is also the reasoning for our seminar.

Our Seminar began yesterday afternoon, with going around the table and sharing our advocacy efforts with the team, what we have accomplished, where stand currently and how we feel about our progress.  Many of us worked hard during the election to engage our MLAs and the media. We fought hard to build these relationships and essentially get on the MLA’s radar.

As I stated in an earlier blog post I was finally able to connect with Terry Lake . I had a wonderful meeting with him and now he is our Health minister!

Many of our other advocates have established relations with their MLAS and many of them have now become cabinet ministers. I believe this will certainly have a positive effect on our efforts in the coming months as we reconnect with them and as they come into their new rolls in parliament.

I found it very helpful to review the government and learn about the rolls. I am and have never been understanding of how the government works and how they do the things that they do.

I learnt about the political parties , the politicians and then the beaurocrats.

The political make up the Ministers. They are governed by the Crown. They are made up of political staffers and are elected.  Their sole purpose is to serve the government. They have transitory positions. So example, Terry Lake use to be the environmental Minister. He is now the Health Minister.  He was appointed by Premier Christy Clark.

The Beurocratics are the deputy’s, they are not elected.  They are appointed by the ministries and the government. Beaurocrats are a hireococy and their careers are as civil servants whose sole purpose is to serve the people or the public.

The Beuoroctaric positions are permit and are not transitory. They are not motivated by government but the minster will try to impose his views.

When Ministers are appointed to a new department, they usually no nothing about that sector and this is by design. The Beuocrats educate and brief them on the sector. Then the Ministers filter the information and use it to make decisions.

I find this all very interesting and fascinating.  I still have much to learn and rap my head around this but it’s a very exciting time , having a new health minister and a new deputy health minister since our last one was very direct  and non-supportive of our mission.

It is as if the stars are aligning and things are coming together. It’s a very exciting and hopeful time in the community.

This is the time to make change.  A mandate is the time in which a party is in power.  We just had our election in May and now when the parliament comes into session, we may have a short spring election if the bi election for Christy Clark in westside Kelowna wraps up in time, otherwise we will defiantly have a fall session.  Once the session begins the first and second year of the mandate is very important and where the changes will be made.  This is the time where the government is the most powerful.

After the first and second year, the power tends to wane down and the power shifts more to the beurocrats.  The ministers are beginning to focus on the next election and not wanting to “rock the boat “ as it were.

It was very interesting and mostly new information to me.  Understanding the process will really help me utilize my knowledge and my skill set to be more efficient in communicating and advocating for PKU.  But with knowledge comes responsibility .

So to understand this responsibility, we also learnt about the “curse of knowledge” and how that can affect our message.  The Curse of Knowledge I am defiantly at fault for. It can be broken down into 2 parts.

1 : the reflex need to explain the whole issue. I do this a lot.  I feel so passionately and that the whole issue is important and want to give as much information as I can, I want to educate and its hard for me to think that if someone has all the information then why would they not want to help us? But sometimes by giving to much information and spending to much time on the whole issue can take away from your message and you can lose the attention or focus of whom you are speaking too.

Secondly, the curse of knowledge can be when one does recognize if the person you are advocating for  knows anything about the subject you are talking about.  Example using a lot of wording  such as  “scientific or “nursing” language in your message.  We learnt how to focus our message, make it personal, use emotion and keep it short.

Ryan spent time educating to us  what true advocating is and how to be efficient.

Simply put, Advocacy means, “ Telling your story to someone through various means in the express interest of telling them to do or not do something”

Advocacy is a process and it takes time.  When advocating to be efficient and to get your message across you need to ground it into something tangible , make it personal and use emotion.

To focus on our One ask! Not a list of what we want.  That less is more.

Our homework last night was to write our personal story. To use emotion and to have 3 key messages. What is the problem? What is the impact of the problem and what the consequences are if not solved vs. solved.

To summarize what has happened to us and how it relates to the issue.  Our perspective based on our experience and how the government’s inaction or policy has impacted your life.  Your personal story must include your name, age, occupation, where you are from, challenges faces, why you believe they should help and how you personally feel.

The challenge with this homework was to keep this hole personal story under 1 minute!!  Well!! I have so much trouble with that. There is soooo much I want to say and to get across.

I changed my story so much last night and went over it and over it.  I am still not satisfied with it but I have decided to share my version with you.

This is my personal story I wrote for the seminar:

“Hi, My name is Amanda. I live in Kamloops BC. I am turning 27 in a few weeks. I work  as a pratical nurse. I have classical PKU. As an adult and a women with PKU I face many challenges, but to me personally my biggest challenge is maternal PKU. MPKU means that whatever the blood phe levels in my body are , they are double in my uterus and are potentially toxic in my uterus. Which can cause dangerous side effects to my future child. Such as deformities, and mental retardation.

The only way for me to have a successful and healthy pregnancy is to have an even more restricted diet , and even lower phe levels. Currently I am unable to do this because of the limited acess I have to the necessary medical treatments. There is nothing I want more in this world than to me a mother . The idea that they may never happen for me is both devastating and terrifying.

I believe the BC Government needs to commit to improving the care of PKU by investing 2.8 million dollars , a 0.016 % of the health care budget to bring BC up to the rest of Canada’s standards. We need this commitment because, Our brains, our bodies and our dreams are worth protecting. “

I presented this in just a few seconds over 60 seconds. That’s pretty good for me. I have real difficulty condensing my message and what I want to get across.

After this seminar I feel more confident on articulating my story and being efficient at communicating key messages.

The work shops and the roll playing really helped me . I have taken a lot away from this event and so far all I have told you about is only from our first day!

The organizers of this seminar really need to be recognized for their incredible job putting this together for us. Not only for our time but for the efficiency and time utilized, the information and the education but also the services. You see the event was catered. We were in a meeting room at the Raddison hotel and we had so much ground to cover, it was broken down into 2 days.

I actually had worked over night Saturday night and left for Vancouver as soon as I got home from work. We arrived in Vancouver at 1 and the seminar started at 2 pm and went till 9 pm last night. We didn’t have to go anywhere,  it was very convenient having the meeting room at the hotel but as well our meals where catered to us in the seminar , including PKU meals. I had so many new foods this weekend! I made sure to try everything to see if I liked it and if it would be something I may try to incorporate in my life. I was so amazed and impressed with the effort.  Last night for dinner I had pizza by cambrooke, and then the day today started off at 830 with breakfast and diving right into the discussion and presenting our home work. I was so surpassed when I took my seat and the waitress brought my my PKU labeled meal. When I removed the cover I was so taken back to see LOW PROTEIN EGGS!!  2 cambrugers, a onion bagel,  some fried potatoes and fruit! I have never in my life had EGGS! Even low protein eggs! This was a total first for me, They tasted kind of like thin pancakes or crepes. They where very good and I will defiantly try them together . I think when I order them I will add veggies and try to make my first ever omelette.

Then as a mid-morning snack I had pitas with salsa. I loved them!  Lunch was a boxed lunch so you had the option to take it with you if you had to leave. My lunch was a low protein sandwich made with cambrooke home-style bread, 2 butterscotch cookies, a cup of salad and apple juice. I have never had a lunch like this. Or found a bread I can eat un toasted that didn’t taste awful or crumble and hard as rock. I was very impressed. It was a great lunc and very filling. Something I could defiantly see myself taking to work with me on a night shift.

I have posted photos of my special meals from today on my facebook fan page.

Today’s second half of the seminar focused on media, our petition , interviews and discussion around our brain protection strategy plan we submitted to the government  before they dissolved . We discussed more in depth and touched on our key messages, our ask and our strategy for our campaign.

upon leaving today and walking away I have had time to absorb the information from the past few days and I know for me personally this was probably the most valuable session I have and I am so grateful for the support of the experts .

I appreciate them putting this together and am very impressed with how efficient and well done it was.

I really do feel excited. Like I said when I started this blog post, I feel very empowered and supported by the consultants and by CanPKU. I am confident we are a strong force and will not be taking NO as an answer. We will Bring BC from worst to first in PKU care.

But we cannot do it alone; we need and always welcome more advocates.  If I have learnt anything at all it is that you can really make a difference. No voice is to small. I never thought I could make change or have any effect on anyone. I didn’t think anyone would listen to what I had to say. I do feel like what I say and the things that I do like my blog and my fan page are important but I just didn’t grasp that someone else would listen to it or take away from it. I have learnt with working as an advocate for PKU how valuable my voice is and how valuable all voices are.  So do not think that you wont make a difference. Be the change you want to be and stand up! Alone we are rare, together we strong.  PKU Strong!

If anyone takes away from this post and is inspired or would like to learn more about advocating or wants to get involved in our campaign please do not hesitate and please contact me. I will support you and help any way that I can. Even if it means just putting you in touch with others who can help you get started.

The more voices they stand with us the better.

I really hope you will consider getting involved, but if you do not want to take such an active roll as I have , there are other ways you can help. Like signing our petition or using the email tools on the CanPKU website to send a letter to the premier and the health minister about PKU.  You can also support us by making a donation online to canPKU , Buying merchandise from the site or by attending an event!

Be sure to stay tuned in to my blog for more updates and our progress over the next few months !

Thank you to anyone who has read this post in its entirely. I know its probably one of my longest posts as it has taken me almost the whole drive home to write. Also now approaching 3400 words!!

So, until next time,

Amanda!