Musings of a Marfan Mom

End of the (Synagis) Road


You know that I’ve been fighting the good fight for 4 months now to get J the vaccine for RSV, synagis. After the most recent denial, my friend Danielle called the company that manufactures the drug and pled our case on my behalf. The case manager she spoke with agreed to try to help us, and Mark and I immediately got paperwork together.

Long story short, there was a lot of back and forth, then we found out that the case manager assigned us (different from who Danielle had spoken with) missed and/or ignored one of the most important forms we’d sent in, therefore stalling our case. Once this was cleared up Friday and a new case manager assigned Monday, things moved very fast. Everyone we spoke with sounded optimistic that J would be able to get the medication.

Yesterday morning I got an email that J was denied :-( When I called to ask why, I was told that it’s against company policy to explain denials. Then I called our insurance company to find out the out-of-pocket cost for synagis. I was expecting $1,000 – $1,500 a shot. Turns out, it’s $6,000 a shot! That would be $18,000 out of pocket, since there are 3 vaccines left to get. I laughed when the woman told me. I know a lot goes into making the medication, but seriously? What good is a vaccine that insurance companies fight tooth and nail to cover because of the cost, and then parents have NO hope of scrounging to pay for it out of pocket? It’s only helping a fraction of the children it should be!

I feel sad. I worked so hard and still lost. This aspect of keeping my son safe is out of my control. We will continue to minimize his contact with other children, sanitize around the house, etc. obviously, but I wish he could have gotten this too. It’s not right when insurance companies can override the wishes of multiple doctors.

photo by: Andres Rueda
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  1. I’m so sorry it turned out this way. Hoping and praying for J to stay healthy.


  2. So sorry Maya. Have you contacted Advocacy for Patients with Chronic Illness? Although our beloved Jennifer is gone, the organization is striving to continue the good work she started. They have been know to make a difference, especially in ciaims denial cases…. and they do it pro bono.


    marfmom Reply:



  3. Maya – it seriously sucks that you were denied despite J’s need for the medication – as I understood it it was a resource allocation thing… has that changed in recent years? are they at least able to produce enough of it now to meet the demands of those who are approved? in any case – I hope and pray that J can avoid RSV! C’mon Spring!


    marfmom Reply:

    I haven’t heard anything about there not being enough of the medication, not from our doctors, the insurance company, or the drug company. April needs to hurry up!


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