This is Eli

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

My friend, Pam, had warned me about this from the start.

I have a child with cystic fibrosis, which means a lot of things. One of those things is this: I’m probably going to spend a lot of time fighting with insurance companies.

Pam has, over the years, spent a lot of time fighting with insurance companies.

She has two sons with CF, one in high school, one in college.

My son had been alive for 18 days, living in a nest in the neonatal intensive care unit, when I clacked away at my Mac nest-side to share:

The disease, she said, “Is an expensive pain in the ass.”

This concerns me a lot, I can’t lie.

NICU nest flashback.

NICU nest flashback.

I braced myself for insurance fights after Eli had two surgeries. His surgeries corrected a blocked bowel caused by CF. I was surprised and relieved that everything was covered.

That has now changed.

It was a few days ago I learned my insurer has refused to pay for Synagis, a medication used to prevent serious lung disease caused by RSV in children at high risk from severe lung disease from RSV. It is given via a shot each month in cold and flu season. The doses run into the thousands of dollars over several months. I’ll get the total soon from the company.

I’m in the process of understanding if there is a good reason somewhere out there that a baby with a deadly disease shouldn’t have a shot his doctor ordered.

May I have my medicine, insurer? Don't be naughty.

May I have my medicine, insurer? Don’t be naughty.

While I’m trying to figure this out, I’d like to know why my friends with CF children have had their shots denied by private insurance companies, too.

Word on the street from both my regular physician’s office and CF clinic is that insurers are issuing blanket denials this year.

I’m in the process of verifying that. That could get tricky, but I’ll figure it out.

our buddy boy

our buddy boy

I’m disheartened to have deal with an appeal, as are a number of my friends in the CF community. I’ve heard about two other denials just via Facebook chatter. One woman with an elementary-aged child commissioned a lawyer friend to write a scary-looking letter. It worked – but why did she have to go to those lengths? Another friend went through the regular appeals process twice, which meant the medicine was denied not once, not twice, but three times in all. A woman who lives with her CF toddler way up in Yukon Territory, Canada, Alaska’s neighbor, got the shots for her son without any issue whatsoever.

I’m not on a mission to knock private insurance companies here. This isn’t about Obamacare.

I’m sick of all the noise — I just want answers when it comes to Eli and this medication. Why aren’t he and his little friends getting it?

If my son’s lung specialist, an expert, ordered the shots, how can an insurer deny him the protection, and why?

As I try to get to the bottom of questions like this and prepare to make an appeal, I’m left wondering: What if Eli gets RSV while we fight the insurer’s decision? The severe cold’s complications include pneumonia and lower-respiratory tract infection. What then? The American Lung Association lists “people with chronic lung disease like cystic fibrosis” as at-risk for severe RSV. It is extremely contagious.

This is a baby with a disease that kills nearly half of those who have it before age 18. This is a baby with a deadly because that scars lung tissue over time. Infection after infection, a person’s ability to breathe slips away. A CFer often get to the point in life where they a lung transplant is the only thing that will save them. The median survival rate for a double lung transplant is 6 years.

I don’t have the answers as to why my insurer denied Synagis, though I’m inclined to believe this is a cost-savings measure. It’s coming from somewhere, based on something I don’t understand yet, that may or may utter BS used to save money at the expense of Eli’s health.

We’ll see. I’m on the case.

Denied...oh, reeeeally?

Denied…oh, reeeeally?

Reluctantly, I have started a new category called Fighting with Insurance, which is why I put a No. 1 next to this post. Like it or not, as Pam pointed out in those early days, this is a part of our life now. And we will take on because we love our son. She assured me then not to worry. I’d be able to handle it, she told me, because Eli was my baby and I was his mommy.

Pam and I shouldn’t have to fight to get insurance companies to help us help our children live longer, better lives, but we will.

Are you a doctor or nurse who works with children with chronic disease or itty babies? What are you seeing in clinics? Are insurers paying for Synagis leading into the 2013/14 cold and flu season less so than in years past or are things the same? Are you a parent with a child with CF who has either been successful in getting the shots or has had no luck? If you are a CF parent with a story, tell me your story. Make sure to include the country do you live in and whether your insurance private or public. Is there research that has downgraded the shots’ effectiveness? Are you an insurance company insider with something for me to consider or hear about?

Leave a comment or send me a note.

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