Head in the Sand

"If I don't talk about it surely it will go away!"

"If still have checks in my checkbook, so surely there must still be money in my account!" :)

"If I don't answer the phone I won't hear the bad news on the other end."

I admit that I like to put my head in the sand. It's easier to let someone else figure out the problem. Well, the days of living with my head in the sand are over.

I used to think I had good insurance. I've never had insurance worries like so many other people with bleeding disorders. And when it came to advocacy (like going to D.C. advocacy) I never had a level of comfort with this kind of work.

Yes, I admit, my head has been in the sand. And now it can't be.

I thought I was about to have a heart attack last week during one of my numerous phone calls to my insurance company. I have been trying for weeks to get approvals for Xolair (an allergy injection) for my "Christian." The allergist we are working with thinks using this drug may help my son with his allergy to factor eight.

The insurance keeps denying the drug despite conversations with our hematologist. Their reasoning is "Xolair is not an indicated drug for hemophilia."

They are not listening.

And the part that absolutely blows me away is that the drug is approximately $800. $800 in the care of son is pennies in comparision to the millions of dollars we use in factor replacement! Yes, millions and he is eight years old. They don't stop to think that this $800 drug may help my son's body accept factor eight and use less factor in the long run.

The insurance had the nerve to ask, "Have you paid for it out of pocket to see if it works?" At that moment it felt like one of the veins in my head exploded.

I have to get out of my box and do what so many others have been doing for years...get out and educate others and make change happen, in a different way.

I am only a mom with two sons that have hemophilia. Only. Yeah, right. I should know better than to say that .

If you know a parent of a child with a chronic illness you know that there is not much that they cannot do :)

I am not going anywhere and I will do whatever it takes to make sure that my children get the treatment they need to live empowered, fulfilled lives.

No more sand for me.

 

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