Community Discussion Forum Adults and PKU Being deprived of your medication.

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #8610

    hello everyone,

    I am a 22 year old from Newfoundland, Canada. I was born with PKU and for much of my younger years never stuck to my diet very well. I feel like there are many things that have happened to me over the years and in turn I do not feel the best. I have feelings of numbness, worthlessness, uncertainty surrounds my every action. Now that i'm 22 years old i'm more mature and aware of the importance of sticking to my diet. However, thats where i've run into a problem…..

    i want to get healthier and get back on track with my life….the thing is my financial situation does not cover the cost of my drugs. Where i live, there are approximatley half a million people. Out of that amount of people there about 15 people who have Pku. Since I turned 18 i am expected to pay upwards of 700$ a month to cover the cost of my formula. I cannot afford it and have fought with so many people over phone calls that I'm lost. There's little to know help for me to the best of my knowledge…can anyone suggest anything that may help me? I've recently ran out of formula. I've been off it for a few months now and can't seem to catch a break. The only thing i can think of for my next step is to go to the media. Its just upsetting that this is what we people have to go through….i feel ill never have another chance at life without my formula…..does anyone know anything that may help? thank you.


    Avatar of Katie

    I totally hear your frustration with this.  Each time I switch formula, my insurance company gives me a VERY hard time and denies coverage for it.  Well, last year I switched to a new formula again (camino pro) which is about 700 per month.  They continue to deny payment and have not paid it since April.  Make a long story short, in NY formula must be covered, but they are simply not doing it.  After months and months of fighting it, I had to bring it to the state insurance commissioner.  I am very annoyed with it as well because without formula on a PKU diet, our health is severely impacted.  When I was younger, I wouldn't take my formula and unfortunately, had several negative health experiences from it.  It is so unfortunate that there is not more knowledge out there for people in the medical field to realize how serious PKU can be if not treated (not only low-pro diet wise, but also without formula!!!)  Do you go to a clinic?  Do they have any advice or direction for you to take with your insurance?  By the way… I am Katie and 25 with PKU.  In the meantime, try to enjoy your holiday :)  Let's hope the new year brings better things for both of us!

    Avatar of Emily

    Hey there.  I just want to say that EVERYONE who has PKU (or practially any health issue, for that matter) knows somewhat what you are going through.  Please know that you are not alone!  The entire PKU community is on your side! And even though our condition is rare, we are big at heart.

    The tough thing about PKU is that it is hard for people to understand how important our diet is because we don't have immediate/attention grabbing reactions to not getting what we need.  If we immediately collapsed after eating something high in protein or were physically unable to move after missing a dose of formula, people would be aware.  But our negative consequences are usually things only we ourselves can see and feel.   Raising awareness is definitely something that should be done.  The internet is the quickest way to raise awareness these days.  Ever consider making a video and posting it on youtube?

    Also, what is your insurance situation like?  If you have health insurance it might be worth the fight to argue endlessly with them, Katie, do you have any light to shed on this?  As of right now, even though I'm 20 years old, I'm still a student and dependent so my dad fights my insurance battles for me (I am on Camino Pro as well).  But it's only a matter of time before it comes down to me….

    I apologize for the length of this post and I hope it helped or at least encourged you in some way.  Please do not give up!  If you keep drinking the formula you will feel SO much better in everything that you do.  Have you gotten holiday gifts yet?  Consider asking family and friends for donations for formula as gifts.  Make sure your loved ones know how important this is to you, you might be surprised what they would be willing to do to keep you healthy.  Best of luck with it and please take Katie's advice- enjoy your holidays!

    Avatar of Katie

    Em – This has been the first time that I have had to fight this battle on my own through my own insurance.  Fortunately, I have my mom close by to help me through this battle and continue all of the fights hopefully the correct way.  Cambrooke has also been awesome in helping me fight my insurance company.  They provided me with documentation showing the classification of the Camino Drinks and the importance of it.  Hopefully, you will not have to battle the insurance company on your own, but if needed… do not hesitate to ask me for any help!  This goes to anyone really…. :)  happy holidays!

    Avatar of Breanna

    Like Katie already asked, are you being followed by a metabolic clinic? If you aren't you might want to try contacting one. Your best bet might be contacting the clinic that you were followed at as a child. They might be able to point you in the direction of programs that can help you or they might be able to provide you with a few samples until this can get figured out.

    I personally have not experience this issue, and hopefully it will be awhile before I have to fight with an insurance company haha! I am still under my parents insurance, and the state I am in provides my formula for me. However, it drives me insane when I hear stories of how difficult it is for others to get their formulas and foods. I wish you the best of luck, and as always let us know if there is anything we can do to help.

Viewing 5 posts - 1 through 5 (of 5 total)
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