I would like to share a little more information in honor of PKU Awareness Month. I sometimes discuss other costs of PKU, but just realized I have not really explained the
financial cost in detail. I got my inspiration from recent posts by Kelly over at
Littlest Sweet Pea .
If I had to insert a disclaimer here, it would be that all PKU families are not created equal. Everyone has different needs, different insurances, and lives in different states where coverage and programs are not all the same. And although most children Carson's age are picky eaters, not all of them are, and not all are as picky as Carson! Also, there are thankfully several options available for formula and low protein foods.
Currently, Carson is covered under my insurance plan at work, which is pretty fabulous. However, it is far from perfect for the coverage he needs. It does not cover his nutritionist visits (and they are the most important people in our lives!), which so far have been $46 per visit (we go twice a year). And because Alabama does not have a policy to provide medical foods, unless you qualify for Medicaid or WIC (which we don't right now), we have to pay for Carson's formula.
The most important part of Carson's diet is his formula. The formula gives him all the protein he needs minus the part his body can't process, therefore it is specially made. He drinks the brand Phenex-2. Presently we get one case a month of 6- 400g cans, which is about the size of a small can of powdered baby formula, in comparison. My insurance pays 70% after a $50 deductible, leaving 30% for us to pay, which amounts to just over $130 per month! This is our biggest expense.
I make him a loaf of bread about every 2 weeks, and it has several ingredients:
1 cup Wel-plan Baking Mix (made of cornstarch and wheat starch): 400g box for $9
1 3/4 cup wheat starch: CamBrooke Foods Wheat Starch is a 6lb box for $17.99 (I think one of these lasts me about 3 months)
3 tbsp Metamucil (I buy the largest container I can find, Original flavor and always brand name): 29oz container at CVS (which is where I had to buy it last) was $16.29
2 tbsp Coffeemate powder: 22oz for $4 at Walmart
2 tbsp sugar
1 1/2 tsp yeast: Fleischmann's Active Dry Yeast 4oz jar for about $4.50
3/4 tsp salt
1/2 tsp molasses
Most of these ingredients last 3 months, 6 months, some maybe a little longer, so it's hard to calculate a total cost. That comes to about $50 for everything, so if I bought everything 4 times a year, that's $200 (but it's likely closer to $100). That's probably only a little more than most people who buy a loaf of bread at the store every week. If I wanted to buy a low protein loaf already made it would cost $11.99 for ONE loaf from CamBrooke, plus since it is a cold ship item you are required to spend at least $50 minimum, then pay over $20 shipping on top of that. See why I make the bread myself? Plus it tastes a whole lot better!
The most used items in my house are CamBrooke's MixQuick, which I use to make Carson's chocolate chip cookies each week, and sometimes for pancakes. A 6lb box is $34.49! That is by far the most expensive food item I buy. I use Chocolate Dream Dairy-Free Chocolate Chips, which I buy at Whole Foods in Birmingham, and they are about $5 for a 12oz bag (maybe twice as much as regular Nestle chips). The other big food item I buy is low protein pasta. He eats it almost every day. I buy the Loprofin Fusilli from Nutricia North America, which is $11 for a 500g box. A box of Great Value at Walmart, about the same size, might be less than $2, I don't remember exactly. Carson eats a whole cup of pasta each time now, so one box does not last very long anymore. These are his main staples.
Another comparison item, one I can buy at Walmart, is Biscoff spread. This is his peanut butter alternative (which is much tastier than peanut butter!) and he uses it most days on bread to make a sandwich. A 14oz jar is almost $4; in comparison, a bigger 18oz jar of Jif is less than $3.
Carson's only other sandwich of choice is a grilled cheese. CamBrooke's American Cheese Slices are about $11.99 for a bag of 32 slices, versus the brand I buy for the rest of us, Velveeta, which would cost maybe $6 for the same number of slices.
The only precooked food I buy Carson is CamBrooke's Mini Pizza Pockets. That should have been listed under his main staples as well! The best comparison I could find is Totino's Pizza Rolls. A bag of them, twice the size of one box of Carson's pizza pockets, was $3.29 at Target. That contains 40 rolls. A box from CamBrooke contains only 6 (obviously larger) rolls, for $9.99 per box. One box lasts Carson 3 days (meals). He eats them twice a week, so that amounts to $29.97 a month (3 boxes).
Most everything else he eats is typical stuff like we eat that we can buy anywhere, like cereal and fruit and vegetables. But make no mistake...this is an expensive diet!
As I mentioned before, there is no assistance from the Alabama government on medical foods (which are provided to everyone, regardless of income, in many other states), nor is there any help for the special low protein foods he has to eat to fill his tummy without getting too much protein. Insurance does not pay for those, much like a diabetic having to buy special foods (except much more expensive and much more volume!).
There is a bill that has been through Congress a few times but has yet to be passed or approved. Every year since its inception the bill has been lobbied by various organizations supporting PKU and other inborn errors of metabolism who require such diets. I believe the opportunity for the current session has already ended, but please click here to learn about the
Medical Foods Equity Act . Contact your local members of Congress and help support this cause in the future!
