"Not Medically Necessary"

by Hila Federman Ralston, guest blogger to PANSLife

Today our 2nd IVIG insurance appeal denial letter came in. The grim verdict of "not medically necessary" echoed off the page into the gaping hole where once resided my hopes and dreams.

I used to be optimistic. I used to think that people sometimes make poor choices but eventually would come around with enough consistency and compassion. Like the quote from my favorite childhood story: " Quests may not simply be abandoned; prophecies may not be left to rot like unpicked fruit; unicorns may go unrescued for a very long time, but not forever." - The Last Unicorn

I wonder who sat behind the paperwork submission for my son's only chance of a semblance of a normal life again. Did they think about a 7 year old boy in his condition- my boy- who just two years ago was a confident, carefree, typical Kindergartner with dirt under his fingernails, a thirst for knowledge, and a bright contagious smile.

Could they imagine this same boy suddenly disabled, littered with anxiety and OCD, losing his ability to write and learn, be social and even participate in his favorite hobbies.

Could they possibly know the long string of doctor appointments, blood draws, therapists, behaviorists, psychiatrists, and medication trials that would follow with no answers and no change until we landed on the right diagnosis.

I know it’s not as easy and clear cut as other well documented and long-standing illnesses, but the multitude of supporting studies that were sent along with the insurance submission should have clued them into the fact that this isn't something that was pulled out of the sky. My boy needs this. His specialists agree- the same ones that are experts in this field and see thousands of patients with his diagnosis.

Who is this person that can decide otherwise?

Do they have the years of experience of seeing kids with similar symptoms and conditions?

Have they weighed in the added cost of continuing long-term antibiotics, therapies and treatments that can't do enough to bring him back?

Do they see the list of increased risks associated with a failing immune system and a brain under attack?

Have they poured over study after study, sifted through forums, researched every possible alternative and seen that we have trialed everything from diet, to acupuncture to psychiatric meds to behavior modification.

Do they know that one short course of oral steroids can bring back the light into his eyes and have him exclaim "mom, today I can convince my amygdala not to be so afraid!" and then watch that light turn right back off like a switch as soon as the course is done?

Would any of this pass even for a second across their mind before they closed his file for good?

This depersonalized medical system is killing our humanity. And for this boy- my boy- it's not good enough. I refuse to stand defeated. We will find a way to get him what he needs. Because children may go unrescued for a very long time, but not forever. It is our job as parents, friends, allies and humans to see them right, to take them in our arms and carry them out of the darkness.