Critical RSV Vaccine Denied, Fought, then Approved by Health Net

I was more or less expecting a denial of coverage from Health Net this year for the very expensive Synagis vaccination that helps protect at-risk children against the human respiratory syncytial virus (RSV). RSV is the major cause of lower respiratory tract infection and hospital visits for infants and is most commonly dangerous for premature babies, but it also remains equally dangerous and potentially deadly for children with severe respiratory issues — that would be Gwendolyn. I had heard through other SMA families that insurance companies start denying Synagis at the age of 2. When denied, the Synagis vaccination can be paid for out-of-pocket at a super-duper-fun-to-consider cost of $2,000 per shot — the vaccination is given monthly during the RSV season (typically November through March).

So, when we received the denial from Health Net in September 2009 for Gwendolyn’s Synagis, I wasn’t 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.”

Here’s the problem. Health Net and other insurance companies are trying to fit a square peg into a round hole with children like Gwendolyn. It’s 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. Gwendolyn’s 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, I’d argue that she’s 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 isn’t my first health insurance fight, so I immediately started preparing my plan of attack for a long, ugly battle: I’d 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 wouldn’t 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.

I’ve 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 Gwendolyn’s 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.”

I could go on and on and on about how we shouldn’t have to fight a no-brainer fight like this in the first place, how I wish the insurance companies would think outside of the box and be proactive from time to time, and how I wish they would treat “members” less as human cattle and more as human beings. Rather, I’d prefer to thank Health Net this time for reconsidering and doing the right thing. And I’d also like to thank our amazing pediatrician and his staff for helping us get this important approval for Gwendolyn and for taking the fight out of our hands. Getting that reversal letter from Health Net was an unexpected breath of fresh air. And I’m pretty sure I stopped a few more grey hairs from popping through…at least until the next time