So, when we received the denial from Health Net in September 2009 for Gwendolyns Synagis, I wasnt surprised. The reason given was also not a surprise:

...per Health Net Pharmacy and the 2009 American Academy of Pediatrics Red Book guidelines, Synagis is not medically indicated for children older than 2 years of age. Our records indicate Gwendolyn is now 2 years old, therefore the request is denied.

Heres the problem. Health Net and other insurance companies are trying to fit a square peg into a round hole with children like Gwendolyn. Its the typical blanket denial based on standard guidelines and with Gwendolyn, or any child with SMA or similar conditions, nothing is standard or ordinary or typical. You see Health Net, SMA is a DEGENERATIVE disease. Gwendolyns muscles, including her ability to expand her chest wall and, therefore, breathe, are getting weaker and weaker and she is no less at-risk this year now that she is a ripe 2 years old than last year or when she was born. In fact, Id argue that shes at higher risk now given that she is weaker from a respiratory standpoint and, therefore, her ability to fight through a nasty bout with RSV is less realistic today than it was yesterday.

When we received the denial, even though I was expecting it -- I hit the roof! But, this isnt my first health insurance fight, so I immediately started preparing my plan of attack for a long, ugly battle: Id write detailed, well researched letters to every single Health Net executive and board member, file grievances and appeals with Health Net, contact the California Department of Insurance, do blog posts, send Tweets, annoy my friends with Facebook status updates, etc. Thankfully, this time I wouldnt need to go to battle (well, save for this blog post). Unbeknownst to us, the denial was fought on our behalf by our amazing pediatrician. His office apparently wrote a detailed letter about why Gwendolyn and her condition was neither standard nor typical and why Health Net should strongly consider approving Gwendolyn for Synagis this year on an exception basis based on the facts of her specific condition.

Ive done my fair share of Health Net bashing in the past -- usually for good reason -- but this time I want to give Health Net some credit for doing the right thing in the end -- and fairly quickly. In late October 2009 we received a reversal of the previous denial from Health Net for Gwendolyns Synagis. The reason given:

The request is for Synagis for a member who was born at full term. The member currently uses BiPap for a respiratory condition and needs a feeding tube to treat symptoms associated with SMA. The member has had hospitalization in intensive care and is at chronic respiratory risk. The opinion of her treating physicians is that coverage would be appropriate on an exception basis. The member is two years of age on 10/4/09. The member is due to have a first dose of Synagis in November 2009. The member does not meet Health Net standard criteria for coverage, as the member would be over 2 years of age and was full term at birth. The file was reviewed with assistance from a Health Net pediatrician. The conclusion is that the member should be allowed the course of Synagis in view of the past medical history and the ongoing risk from possible respiratory illness. The denial is overturned on appeal.