I am on the phone with insurance, again. Ezzy has needed a series of genetic tests done to help up in understanding the nature of her disorder (or disorders, yes it may be multiple things). These tests are not cheap. There is one that sequenced three genes for collagen disorder and another that will sequence around 50 known genes for infantile epilepsy simultaneously. The second test takes about 14 weeks to process. I called insurance prior to organizing the blood draws for Ezzy…which are an unbelievable form of torture that I will explain another time. I gave them the CPT codes for the tests. I gave them the Diagnostic Codes for the tests. I was told all was a go, assuming I used an in-network lab. To me, this meant that I needed to get the blood drawn from a place that is covered…so we went to the local hospital were we always go. The reason it meant this to me is because these tests are so specific that there are very few labs that do the testing. In the case of the collagen genes, there are 11 labs in the world that sequence these genes, a couple in the US and Germany, one in England, one in Israel. I believe there is only one lab that does the epilepsy panel. So, its not like I really had a choice about where to send it.

BUT, I am told that this was not what it means. So, although they prompted me for the diagnosis codes, when I called to verify coverage for the tests, they never asked the name of the lab…I guess I was to devine that I needed to ask about the lab?

The labs, however, in the case of these cutting edge tests do not participate with insurance in the way the labs that process your CBCs and other similar typical tests do. It has proven to be too difficult for them to deal with the insurance denials and runarounds that happen around expensive testing for expensive clients. So, the labs will bill insurance, but they do not deal with them.

I wish I had that option.

This is one of the major problems with an insurance policy that uses the consumer as the main spoke in the wheel. In one ear I am told by my daughter’s doctor that we need a particular test, that a particular lab runs it. They give me codes to check. I do not know what these codes are, I just diligently copy them and hope that someone will understand when I call the insurance company. I call insurance and am told “its ok,” but that payment cannot be assured. I call the lab and find out what their billing process is…I have to provide a credit card to cover the $4,000-5,000 tests in the (likely) event that insurance doesn’t pay for it. I make these calls between seizures, between hospital visits…all the while trying to limit the number of needles that need to be stuck into my child.

I do my best to speak doctor, to speak insurance, to speak lab. But it is like a game of telephone. Things get lost or distorted. Since I don’t understand the topics, but must be the go-between, certainly some of these errors are my own. How could it be that I could possibly get it all right? It is too much to ask of any person. Other people involved in the process also make mistakes…they are only human. But if there are problems, my family is the responsible party.

People who are opposed to providing insurance to all citizens of this country often argue that they “don’t want someone coming between them and their doctors.” But seriously, what isn’t coming between Esmé and her doctors in this scenario? Insurance, independent lab policies, even her own mother’s ability to understand the fucking twilight zone of insurance policies.

I’m already working on my grievance letter to our insurance company. I promise I will edit out the expletives…at least most of them…before I send it.