Wednesday, November 19, 2014

Former Micro-Preemie Denied Synagis Shots

Our health insurance company has denied coverage of Synagis (Palivizumab) for my daughter for 2014-2015.

That’s right. We asked for coverage of Synagis for the prevention of complications from respiratory syncytial virus (RSV) infection -- and we received a BIG FAT “NO.”

I'm not shocked by this decision, but I am sorely disappointed. And, I am genuinely concerned about the health and well-being of my child.

Our preemie was born at 28 weeks gestation, weighing one pound, eight ounces. She was classified as a micro-preemie. Today, she is 22 months old (19 months adjusted) and weighs a mere 20 pounds.

If our preemie is infected with RSV she will likely be hospitalized. She already endured a 67-day Neonatal Intensive Care Unit stay and doesn't need to spend time in the Pediatric Intensive Care Unit.

I suspect that our preemie would also lose weight if she were to contract RSV. A 20-pound 22 month old baby, simply can’t afford to lose much weight. But weight, feeding, and nutrition issues appear to have no role in determining Synagis coverage.

Is hospitalization preferred over Synagis coverage?

Respiratory Syncytial Virus

RSV is a serious infection. In fact, it’s the leading cause of bronchiolitis and pneumonia in U.S. infants under the age of one. Infants born prematurely, and infants and children with chronic lung and heart disease are at higher risk for severe RSV infection.  Every year, approximately 75,000 to 125,000 children under the age of five are hospitalized for RSV.  Although no vaccine is currently available to prevent RSV, the monoclonal antibody -- Synagis -- can help reduce the severity of the illness.  

American Academy of Pediatrics & My Personal Views

Over the summer, the American Academy of Pediatrics (AAP) revised its recommendations for the use of Synagis for RSV. 

These new guidelines significantly limit the number of patients who will receive Synagis.

​​Do the new AAP guidelines really represent the views of the majority of AAP members?

I would love to find out.

In fact, if I had the time, money, and energy, I’d poll pediatricians across the nation about AAP's new guidelines concerning Synagis.

I suspect that a significant number of the 62,000 AAP members do not agree with the revised standards. Yet, most AAP members will bury their heads in the sand and continue to maintain membership with their national trade association.

Why? Pediatricians won’t likely drop membership with the AAP due to fear. Fear that not belonging to the club will negatively impact patient volume and raise parental concerns. Fear that parents researching pediatricians will immediately exclude physicians without an AAP membership behind their names.

How will the new AAP guidelines impact patient hospitalization for RSV?         
I suspect that the new AAP guidelines will negatively impact patient access to Synagis, resulting in more hospital stays, higher severity of illness, and higher medical costs.

I know first-hand that Synagis shots are costly. Since I have a high-deductible health plan, I picked up the bulk of the cost associated with the shots in 2013.
I recognize that lines may need to be drawn between the proper and improper use of expensive prescription drugs, but was the AAP's line drawn correctly?

Last year, Synagis provided us with peace of mind. This year, we are left to rely completely on prayer.

It is my hope that a vaccine for RSV is made available sooner rather than later so that preemies and micropreemies who are denied Synagis shots are no longer put in such a troubling and vulnerable position.

Has your insurance company replied to requests for Synagis coverage in 2014-2015? What type of response did you receive?


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  1. According to NCBL web site the average cost of a Pediatric ICU stay is about $2500 per day. Sounds like it could get expensive really quickly. I would think the insurance companies would rather pay for a shot than a hospital stay. I guess be happy that Emily is no longer being considered high risk. Praying that Emily continues to be healthy and this will be a non issue for you.

  2. How frustrating! I agree - it seems so silly to deny a vaccination over a hospital stay.

    Katie @ Cup of Tea

  3. I'm so sorry you're having to go through this! Sometimes there seems to be no rhyme or reason to insurance companies' decisions!