You are not going to believe this... #SMA #insurance #CareFirst

Guess what! -- According to CareFirst BlueCross BlueShield Health Insurance, Emily has no medical need for skilled nursing care. Yeah. I'm not kidding. The letter of denial says that the Medical Director reviewed our Letter's of Medical Necessity submitted by Emily's Dr. and LPN nursing notes provided by our nursing agency to determine the following:
... The services provided by the private duty nursing are considered custodial. The patient received oral suctioning multiple times a day, occasionally nebulizer treatments and basic positioning ...
If THIS is what he determined from the paperwork submitted, I can only assume that he did not actually read any of it. Insane. The LMN's and nursing notes are EXTENSIVE - not to mention the common medical knowledge available about Spinal Muscular Atrophy (SMA)! Not only do they show that Emily requires frequent suctioning, 24 hours a day, to prevent Naso-pharyngeal aspiration, oxyhemoglobin desaturation, bronchial infection, pulmonary failure, hospitalization, or death - they also show that she is:
  • dependent on mechanical ventilation when sleeping and sick - provided via BiPAP- or she will go into respiratory failure
  • continuously fed via gastronomy tube b/c she has no ability to chew, swallow, or protect her airway
  • dependent on routine pulmonary treatments multiple times a day to include chest physiotherapy, nebulizers, a mechanical cough assist that is deadly if used incorrectly (or ambulatory bag), and postural drainage
  • highly susceptible to respiratory infections such as Influenza and RSV
  • unable to have a bowel movement without intervention
  • dependent on vigilant skin care and repositioning to prevent breakdown due to diminished tissue turgor and immobility
  • dependent on parents and caregivers for all activities of daily living
But there is more... the letter also gives examples of what IS considered medically necessary for skilled nursing. Among them are the following that, WITHOUT A DOUBT, apply to our situation:
2. Levine tube/gastronomy feedings.
3. Naso-pharyngeal and tracheotomy aspiration.
!! But, since this is the denial following an appeal, CareFirst will no longer hear anything on this case and we are forced to go through the process of submitting a formal appeal and grievance with Maryland Insurance Administration.

It is hard to believe that a company like CareFirst can get away with such blatant disregard for medical evidence and patient well-being. Throw in the added complications associated with the multiple severe disabilities Emily has and it is purely unethical at best. Decisions like these that deny medically necessary services to a child like Emily cause irreparable difficulties in her life and our family.

We are pursuing a few options to resolve this issue that I will not go into via the blog.


SteveGreen01 said…
I am so sorry that the process has led to this decision. I hope your future actions are able to provide the support and medical care that Emily needs. We are praying for you!
Anonymous said…
that is just terrible. you guys are such awesome advocates for sweet emily. i'm sure you'll have a new plan in place soon - from what i've seen on your blog, you don't stop until you've achieved!

you guys are awesome. thanks for sharing emily with the world.
Dinosaur Mom said…
Oh for cryin' out loud. My sympathies. I've been irritated by my family's own insurance issues, but this is just obscene. Good luck to you in getting this resolved!
Nate said…
Thanks Steve, Anonymous, and Dinosaur Mom -- It's sad to have to realize there are people out there that make a career out of illogical decisions, but they do exist. We will fight this!