Since that conversation in June I have gotten a few confusing letters from insurance saying that some things will be allowed, then a few days later saying that those things won't be allowed, and then another few days later saying that they might be allowed. Knowing that I had the support of DOBI, I figured I would wait to hear from them and see what they could make of the letters.
The call from DOBI finally came. And I am not the only one confused or unhappy with what insurance is doing.
This wonderful woman explained that insurance is going back and forth and writing confusing letters, basically prolonging the whole process. She spoke to them after receiving her copies of the letters, and what they are saying is that if we get precertification before doing any of these tests then they will cover a portion of them.
There is two problems with this...1)we already had the blood for these tests drawn on June 4 because after over a month of two doctors trying to get precertification they adamantly continued to deny the tests and 2)they have given no indication that if we would have waited to draw the blood they would approve the precertification.
Any time I have called insurance regarding these tests every person I speak to mysteriously says there is no record on Phoebe's chart of any of the CPT codes being requested and there is no record of the doctors submitting any more information.
The woman from DOBI explained to me that they are doing there best and will work on this as long as they need to. She also told me that insurance failed the first time they denied these tests because they were supposed to allow me to do a specific appeal and outline a basic course of testing and necessity to prove that it was needed.
Basically the insurance company saw "rare" and decided anything associated with it would be too expensive and they refused to pay.