The Economic Side of PKU

Having PKU is expensive for many reasons.  In order to control the PKU and not develop permanent brain damage, a person with PKU must maintain a low protein diet for life and drink their metabolic formula for life.  Depending on the state that a person lives in, determines just how expensive this is.  Currently, most states don't mandate that insurance companies cover the metabolic foods and formula that PKU people need to survive.  Now if you needed to control your diet for diabetes, insurance companies cover the insulin medicine that you would need.  BUT if you needed to control your diet for PKU, insurance companies would not cover the medicine (medical grade food & formula) that you would need.  Does that seem fair?
  
      Just to put things into perspective, here is a list of typical foods that a PKU person would eat daily and the cost of the food items compared to "regular" food items....

                        PKU Foods/Cost                                              "Regular" Foods/Cost                                  
                  
                    Low Protein Linguine- $10                                           Linguine- $3
                  Low Protein Bread Loaf- $12                                     Loaf of Bread- $4
                Low Protein Pierogoi- $17.50                                    Box of Pierogi- $4
                       Baking Mix- $29                                                       Flour- $3
                Low Protein Brownie Mix- $12                                    Brownie Mix- $3
                   8 Low Protein Bagels- $12                                       Bag of Bagels- $4
       25 pieces of Low Protein Chocolate- $22                  Big bag of mini chocolate bars- $6

     Now there's a lot of "regular" foods that PKU people can eat, but the foods still need to weighed and have the protein/phe levels known- veggies, fruits, coconut milk, coconut yogurts, margarine, certain salad dressings, hard candies, etc.  Some people with PKU have a high phe tolerance and can put in a small amount of white bread and cow's milk into their daily diet.

     Lily has a low phe tolerance of 295 mg per day.  Thomas is currently at 50 mg per day, but he's still a baby and his number is expected to rise.  Since Lily has a low tolerance, we rely heavily on the low protein foods and fruits and vegetables.  Currently our insurance does not cover Lily's food.  However Illinois hospitals have a division for families to provide food at a discounted cost for qualifying families.  Not all states have this.  So imagine if you live in a state where your medical food isn't covered, how do you get by?  It can be really tough.

     Here in Illinois, our medical formula is provided for free.  Each month, I call the state office and order our formula.  It gets shipped from England, to New York and then to us!  I am extremely grateful that I live in a state that provides the formula.  Formula is not covered under insurance and is extremely expensive.  I can't go to a store and just pick something up.  PKU formula is medical grade and provides protein to help my children grow, but it doesn't have phe in it (the type of protein that my kids can't have).  If ordering the formula online, it costs anywhere from $67-$95 per can!  My kids go through 2 cans each week, each kid!  I'd be spending close to $300 each week on their formula.  Plus it's not like baby formula.  They need to drink their formula every day for life, in order to meet all of their dietary needs! 
    
     This is just one perspective of PKU economics.  We also take weekly blood draws and them sent to figure out the phe levels.  Plus our monthly drive to the clinic and cost of the appointment. 

     Please don't read this and think that I wish my kids didn't have PKU.  Honestly, sometimes I think about it and know that it would be easier that way.  But my kids are mine and are perfect just the way they are.  Their genetic disorder is part of them and has given us so much.  I'm beyond feeling the guilty part and hating the diagnosis.  I'm at the point where PKU is just part of our family, expensive or not!  Don't read this and think that I'm wanting your sympathy.  I'm just wanting to educate everyone about PKU, all aspects of it.  I know that having PKU children can be challenging, but there are so many other disorders and diseases out there that are much more difficult.  I'm grateful for the life that I've been given, and know that I'm right where I'm supposed to be!