We have seen these reasonings every time Phoebe has had blood work done for anything other than a CBC (complete blood count). Blood tests!? Deemed unsafe!? But having a CBC drawn every week is considered safe, effective and covered?! Blood tests!? Deemed ineffective treatment!? Sure, some blood tests are used to monitor therapeutic levels of medications a patient is on, but the test itself is not the treatment! The test is showing how effective the treatment...the medication...is. Blood tests!? Deemed unnecessary!? We had the same insurance company for 5 years. Every time, and I do mean EVERY time, Phoebe went to a doctor this insurance company knew about it. (The ONLY exception is the NIH since it is government funded and doesn’t go through insurance) This meant that our insurance company had a thick file, proof, of the medical fragility of Phoebe. Their IDT codes showed what the doctors were thinking, symptoms they were dealing with, health complications Phoebe was facing. And if that wasn’t enough, there was all the extra that her doctors and I gave them in the form of letters and conference calls.
The only part of their denials I could partially agree with, ever, was blood tests being experimental. Yes, some testing is experimental. But isn’t that what has advanced the medical field...experiments and research? Isn’t that how we now have names and treatments for diseases that had none a decade ago? Isn’t that how we have been able to stay ahead of potential epidemics and crises? Aren’t these tests needed?
Phoebe needs these tests. She needs them to help figure out what the diseases she has are, what treatments are available to alleviate her symptoms and control her flare ups, and what medications are most effective when she is sick that do not cause her other systems to decline. But it doesn’t matter what you or your doctors say in your appeals to try to get testing covered, insurance doesn’t want to hear it. To them, it’s the bottom line. What it is going to cost them to cover the tests Phoebe needs.
Which means you are left with the heart wrenching choice of either paying the astronomical cost out of pocket (we have seen bills of 20k) or delaying testing to continue to fight, hoping they change their minds and approve coverage.
#12DaysofRareChristmas
*photo is only a portion of Phoebe's medical history file...