The Economic Side of PKU Part 2

There are not that many people who have PKU in the United States.  Approximately 14,500 people in the United States have PKU. Of that 14,500 people, 5,500 of them were not diagnosed at birth.  Those 5,500 were not started on a proper diet immediately and are now living in dependent group homes or mental institutions!  There's also an unknown number of people who had PKU but it was never diagnosed, because they were born well before the newborn testing.  Most of these undiagnosed people were just labeled "Mentally Retarded".
       Knowing this information helps to put the next part into perspective.  The other day I mentioned that having PKU is expensive for families.  Having to buy low protein food and formula is tough.  But it would be even harder for families and society to have to take care of a person who has not had their PKU treated. 
The following information can be found on the National PKU Alliance website.

      Even though PKU is expensive, it would be even more expensive to take care of PKU patients who did not maintain a low protein diet or drink their formula.  Let's think about my state, Illinois.  In Illinois, the PKU formula is provided to my family for free.  Yes, I know that it's paid somehow, probably through the taxes that you and I pay. (Thank you)  I'm sure right now, you're thinking- great another state run program that's helping some other family but not mine.  But please read on....

The annual cost of medical formula for PKU averages $7,100 per year, per person.  However, the cost of diagnosing and treating the PKU is extremely less expensive that treating someone who was not properly diagnosed.  Here's the break down.


Cost per infant for newborn screening (varies by state)                                            $50
        *Covered by insurance companies
Number of newborn screenings each year                                                             4 million
Annual cost of newborn screening for all                                                            $200 million

Annual cost per  person for medical formula                                                           $7,100
Number of Americans needing formula                                                                   20,000
Annual cost of formula for all Americans with PKU                                             $142 million
     *Not all states pay for the formulas


Annual cost of Nursing Assistant care in residential care center                       $50,000-$100,000
Number potentially requiring care because of non-treatment                                    20,000
Annual cost of managing disable patients treated too late                                       $1-2 billion


     Can you see that even though PKU is expensive, it could be so much more?  Imagine if there was no newborn screening or no insurance or government help.  The ideal annual cost is only $7,100 compared to the non treated cost of $50,000-$100,000.


     When I first saw these numbers, it blew my mind.  I know that I would never not treat my children, but guess what, there are some families that just do, for a variety of reasons.  Plus, there's countries that don't provide newborn screening!  So, now do you understand why newborn screening is essential?  Please use this information to be more aware of PKU and to urge your state to screen for more diseases and disorders.