This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!


“I’d like to speak to the medical director. The person who made the decision about Eli’s medicine. I want him to spell out to me why a baby can’t have his shots. I’m not planning to yell, I want to understand. Maybe there is something I don’t understand.”

There are a lot of things I don’t understand, as it turns out. Like:

How does one appeal a denial from a private insurance company? I’ve never had to before. This week I’m starting that process for my son

The short of it is, that involves listening to a lot of a strange blend of electric flute and elevator music.

I spent time on hold today.

I spoke to a customer service representative from my insurance company. I got a good one. She got it — I wasn’t losing my mind. I wasn’t crazy. I just wanted to talk to the decision makers. She put me on hold for a long time. It was OK. It was a signal to me she was trying. She checked in twice to let me know she was still trying.

I learned I couldn’t talk to this person, the one who made the call not to pay for the shots ordered by my son’s doctor. The person who made this call is a medical director. A paying customer like myself talking to a decision-making medical director was against the rules. Only a physician can challenge a medical director on the phone. The medical director decided not to pay for five doses of an expensive medicine called Synagis. Synagis is supposed to protect my chronically ill child from a severe type of cold that could lead to severe lung infections. Eli’s regular doctor and his lung doctor feel he should have these shots.

By the way, I hate calling Eli chronically ill. It suggests he’s sickly, which is is not. It suggests he is defined by his disease, cystic fibrosis, which he is not. And if you infer when I drop “chronically ill” into the middle of a sentence that I want pity from the world, you are wrong, I don’t. I just want medicine to help my son stay healthy. Chronic illness is a part of our reality. So is fighting with insurance companies now.
I checked in with the CF clinic where Eli is seen every three months. He’s weighed and the back of his throat is swabbed in search of alarmingly-named bacteria that could hurt his lung function. He sees one of two pediatric lung doctors in the Oklahoma City metro area at the clinic, Dr. Royall. Buddy gets the once over at the clinic to make sure the symptoms of his disease are in check. I wondered: should they file an appeal, too, along with Eli’s regular doctor?

It turns out that private insurers have denied every last request for Synagis this year from the Oklahoma City CF Clinic and every appeal the clinic generated in response to those denials. This has not happened before in anyone’s recent memory. According to Royall, Medicaid is paying for the shots, but not private insurance.

That’s nice.

I took Eli to his regular physician’s office on Monday, two days ago. He’s got a little cold and needed his flu booster.

The word was similar there. Not just CF kids, preemie babies in neonatal intensive care are getting denied this medicine. This stuns me. When Eli was in the NICU and the nurses learned Laila has the severe type of cold called RSV, we had to wear full protective gear over our clothing for over 10 days. We didn’t bring her there, of course, but Mark and I were in the NICU every day with our son. The nurses told us an RSV outbreak in a NICU can kill, has killed, vulnerable infants. Gowns, gloves, masks – we covered ourselves in the whole shabang *just in case* Laila was still shedding the virus and we were symptomless carriers.

I’m so curious: what has happened in recently in science to back up the decisions to deny infants and babies this medicine?

Eli’s denial pointed out in gag-inducing jargon that I could request “a copy of the rule, guideline, protocol or criterion, or explanation of the scientific or clinical judgement for the determination…”

If there is a study I will find it. I want to know who funded it. The Synagis maker’s competitor? HAHAHA, that wouldn’t surprise me.

Anyway, process is boring, but I will say I had Eli’s doctor file an appeal to the denial. I asked Eli’s doctor to call the medical director who made the decision about the medicine. I filed an appeal. I requested a case worker within my insurance company to help me push for the meds.

In fact, I received a nice e-mail from a reader that said an insurance company case worker helped her family to get the same medication.

On the emotional end of things, all this wrangling and electric flute music has drained me. The jumping through hoops of a first appeal made me miss my mom. That sounds rather pathetic, but it’s true! Any time I face something new, I wish she were here, I wish I could hear her voice, her reassurance.

Well, we can’t always get what we want. We get what we get. I had a great mom who always urged me to push forward. She had a talent for calling out people for their BS.

I sure as hell am going to try to get my son his medicine.


5 thoughts on “Denied: fighting with insurance (part deux)

  1. You don’t have a state-backed secondary insurance program for children born with health issues? There’s something in Michigan called Children Special Health Care Services, and Luke qualified for it as a baby because of his heart, and it gave us Medicaid on top of our private insurance. I believe that’s what we used to pay for our Synagis. I’m not sure what Oklahoma has, but it might be worth looking into. Maybe check your Department of Community Health. Here’s what it is in Michigan:,1607,7-132-2942_4911_35698—,00.html


    1. j&m says:

      Oklahoma is not like Michigan when it comes to services like healthcare for babies, unfortunately. I have looked into a program called TEFRA. It is a nightmare to apply to it that can take up to 9 months. Maybe it’s time to resurrect that paperwork, but it’s so complex it seems pointless. It also wouldn’t help me this flu season. I’ll keep researching, though.


  2. Ugh, that sucks. What a crock of shit you’re dealing with.


    1. j&m says:

      Yeah. I don’t mean to go on and on about it…actually I do. Lol. He’ll be fine. We’ll wash hands and do our best. I just find it so hard to believe a medical director at an insurance company who has never met my son can make a decision about my son’s care. It’s screwy. His doctors, who are familiar with him and all of his buddy man issues have ordered something they believe he needs for a reason. I get that there should be checks and balances in place against questionable orders from hospitals and doctors, but in this case, just give a buddy his shots! The way drugs are priced also gets to me – I don’t want to pick on an insurer alone! Why price these things at a grand a pop? It’s all messed up…


  3. Caitlin says:

    We had the same issue with Blue Cross Blue Shield here in CT- not cool…. We didnt get the RSV shots, both kids (both CF kids) Got RSV. Both did well…. Hope it helped their immune systems get stronger. I dont understand it either and it terrifies me.


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