My insurance's internist called the immunologist today. This doctor had never even heard of ALPS. He did not know that it was an actual syndrome or that there was testing for it. And despite the fact that he was told what this syndrome does, what it means for Phoebe, that these tests are reputable, what research is being done, how this determines where we go next, and going over her clinical history and test results this doctor informed the immunologist that in our insurances eyes, this entire thing is "experimental". Because they don't know anything about it or have these tests on their list recognized stuff, they will not cover the cost at all.
Clearly, insurance is far behind medical research.
While this is disappointing and a let down to us since our premium is paid every month to have health insurance coverage, this is not stopping us or silencing us.
I was informed today by the immunologists office that this is actually a fairly common issue. Insurances will pick and choose what they will recognize and what they will cover. And unfortunately because of this, there are many people who don't have the resources, strength or time to fight it, appeal it or pay out of pocket. So these people will go without treatment and tests they need.
This is just driving me more to fight to fix this injustice! No person, especially children, should be denied necessary testing and treatment. It is time insurance stops making excuses and starts to recognize all of the diseases and disorders!