Musings of a Marfan Mom

The Hardest Thing for Special Needs Parents


The mission: to find out the status of Baby J’s synagis (RSV vaccine) appeal

The backstory: The pulmonologist filed for this medication back in September. The nurse told me it was denied Oct. 18th and she filed an appeal 5 days later. She suggested I find out where in the appeals process the claim was, because J is supposed to get the first of 5 shots this week.

What goes down:
1) I call our prescription insurance company (different from our medical insurance company) and explained the situation. The representative can’t find any record of our claim in the computer. Suggests I talk to their “special prescriptions” division.
2) I’m forwarded to that division. Rep starts looking for a record of the claim. I get disconnected.
3) Rep calls me back. Continues to look for said record. Cannot find it.
4) I call the pulmonary nurse and relay this information to her. She tells me that she never filed with our prescription company; she filed with our medical insurance company. She gives me the number for their synagis line to call.
5) I call Company X, the subsidiary of our medical insurance company (MIC) who handles synagis. Company X says all they can tell me is that the appeal is being considered, and that I need to call our MIC in order to get more detailed information.
6) I call our MIC. The rep is unable to find any record of a request for synagis, let alone an appeal. She calls a rep for Company X and I tell my story *again* to the new rep, as she explains *again* that she can’t tell me anything and that I need to speak with the clinical decisions team at the MIC. The MIC rep promises to transfer me there.
7) The clinical decisions rep says she has no idea what I’m talking about and has no way to access the information I’m asking for. She says I need to talk to the customer service rep. I explain the customer service rep sent me to her. She gets snippy and tells me she can’t help me. I get snippy back and say that since I’ve been told her department is the one deciding the status of the appeal, I need her to explain why she can’t help me. She basically accuses me of making stuff up. Then she tries to tell me she understands how I feel. She is lucky I cannot reach through the phone to smack her.
8 ) I’m transferred back to customer service, but a different rep from before. I explain our whole story again. She searches through the system again. As she’s looking she tells me that although other drugs have an expedited approval process, synagis does not so we will have to wait 15 days for an answer. She still can’t find any record of the appeal. Then, lightbulb goes off and she says she’s pretty sure the appeal being considered (see step 5) isn’t actually for synagis, but for the nutritional supplements the pediatrician requested for J, which were denied because our plan only covers supplements for “the sole source of nutrition” (which makes them NOT supplements, but g-tube feeedings…). We never submitted an appeal for those. She suggests I call our pulmonary nurse back and ask for the CPT code from the denial letter so we can confirm her theory.
9) I call the pulmonary nurse and explain the situation. She – wait for it – tells me there was never. any. appeal. No, what happened was she sent the initial request through their hospital, and it was the hospital synagis agency who took 6 weeks to tell her that they don’t work with our MIC and that she needed to file a request directly with our MIC. So, our MIC didn’t get the paperwork until last week. Also, she only went through Company X, never our MIC directly, hence why they don’t have any paperwork.
10) Pulmonary nurse promises to call Company X tomorrow.

This? Took over an hour and a half of my afternoon that I’ll never get back. And of course this doesn’t count the time I spent on the phone with the insurance company last week on our second appeal to get J’s asthma inhaler covered, or the time Mark spent on the phone with them today about a billing issue for M’s OT.

People think our kids’ differences are the hardest part about having a child with special needs. No. The hardest part is having to fight the insurance companies and schools to make sure our children’s needs are taken care of.

photo by: JuditK
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  1. This. Absolutely this, one million times over. Sometimes I feel like diabetes would be easy if I didn’t have to spend half of my week on the phone with an insurance company. Sheesh. I SO understand!


    marfmom Reply:

    I would have added “and people with a disability” but then the title would have been too long, haha. I really miss out CA insurance…we never had issues.


  2. I’m so glad we don’t have government-run insurance in the US. There would be so much hassle and paperwork to get the care you and yours need. It’s good that we’re still on a private insurance model in this country, so needless wasting of time doesn’t occur.

    And I agree that it’s good we can’t smack people through the phone. Something tells me we’d be cellmates if we could.


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