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An insurance vent.

I will preface this by saying something that I've said countless times before. I am beyond grateful for health insurance and for the very generous coverage we have been blessed with in the past 3+ years since Raya was born. In her first year of life, she racked up about a quarter of a million in insurance claims and goodness knows how much the last 2 1/2 years have tacked onto that amount. For the first 15 months (before she was able to get secondary insurance) we had a sizeable amount of out-of-pocket expenses that kind of sealed the deal with us having to sell our house that year, but even so, we have been incredibly blessed with good insurance coverage and we are very, very, very grateful for that.

That being said, insurance red tape is so unbelievably frustrating sometimes. I had kind of moved on from our unpleasant experience at the hospital with Raya's pyloric botox injections getting canceled at the very last second (and very early in the morning). Then we got the official denial letter in the mail from the insurance company and now I'm mad again. Here's what the official letter says:

After review, _______ has made a decision about coverage for the following health care services for the member named above. ______ uses nationally recognized clinical guidelines and resources...(website reference to clinical bulletins) to support these coverage decisions.

Coverage decision for: 07/12/13-07/12/14: J0585 Injection, onabotulinumtoxina, 1 unit 6 times

Coverage for this service has been denied for the following reason: We have reviewed information received about the member's condition and specific circumstances using _____'s clinical policy bulletin: Botulinum Toxin. Based on this review, coverage for botulinum toxin for injection into the pylorus is denied because there is not sufficient outcome data available from controlled clinical trials published in peer-reviewed medical literature to substantiate its safety and effectiveness in the treatment of the member's condition. Therefore, this service is considered experimental or investigational and not covered under the terms of the plan.

(Experimental/Investigational Denial) This coverage denial was based on the terms of your benefit plan. Your plan does not cover experimental or investigational services except under certain conditions. Please see the reference to experimental or investigational services listed in the Exclusions section of your benefit booklet/handbook.

*DEEP BREATH* Ok. This makes me angry for many reasons. First and foremost, I don't feel like the insurance company asked enough questions. Of course I have no idea what really went on behind the scenes when the decision was made. I went to the website referenced in the letter and looked up their clinical policy bulletin on botulinum toxin, which says that it's considered experimental for pylorospasm. To my knowledge (which may not necessarily be the case) Raya has never been given the diagnosis code of pylorospasm, but I suppose that may have been how the procedure was coded. (I do need to call the insurance company and ask for the codes that were used for everything.) In fairness, going down the list of approved uses for botox, I really don't see anything that fits Raya's circumstances, but all they had to do was talk to the GI doctor or talk to the GI nurse and actually get someone to explain the treatment to them. Just because it's not on their current approved list doesn't mean that the treatment is not potentially safe or effective. Sheesh, all they had to do was call ME and I could have explained to them why botox would be a beneficial treatment, especially as opposed to doing a surgery instead!

This is another reason why it really bothers me that it was denied. We have a little friend who sees another GI at the same practice and has the same insurance company. A few weeks ago, she had the SAME procedure done and the SAME insurance company authorized the pyloric botox injections for her. How can it not be deemed experimental or investigational for one child with delayed gastric emptying but then denied for another child with delayed gastric emptying with the same insurance company?? I don't understand it. (and for the record, it seems to have been very helpful for the other child...)

And another reason why their denial bothers me. Assuming they actually HAVE paid attention to her medical history, as they claim to when they say they've "reviewed information received about the member's condition and specific circumstances," they must know that it's costing them a lot of money every month for her to be 75-90% dependent on a feeding tube and hypoallergenic formula. They must know that we have done many, many other things to try and help her, and yet they must know that she is still very much dependent on her feeding tube. Doesn't it make more sense to TRY to do something that would potentially allow her stomach to handle a larger volume of food and function more normally and MAYBE get her on the road to getting off of her very expensive feeding tube supplies at a FRACTION of the cost of continuing to have her dependent on those supplies?

Along those same lines, we basically have 3 options at this point. First was the botox and we now know how that worked out for us. Second is to do a surgical pyloroplasty to enlarge the opening of her pylorus so that food would pass quickly and easily from her stomach to her small intestine. It is much more invasive and (in my opinion) carries more risk than at least TRYING the botox. It is not reversible and could cause dumping syndrome. The third option is to do nothing. Sit around and wait some more to see if her stomach just fixes itself someday. I know I have somewhat of a pessimistic view when it comes to the idea of waiting for her to "grow out of it" but I have watched her at feeding therapy (where she does her best eating) and I have seen her reflux, spit up, and vomit because she ate too much or drank too much too fast. Until last fall, she wasn't as bad as she is now so based on seeing her regress physiologically with how much her stomach can handle, I don't feel very optimistic about her body just fixing itself. It has NEVER just fixed itself and she has never just grown out of anything. Every bit of progress she has made has been worked for, medicated, tube fed, and therapied for, so yeah, it's hard for me to see how it can just magically change and hard for me to feel good about just sitting by and watching her struggle with food that her body has a hard time processing. And let's not forget that she does carry a diagnosis of cerebral palsy, which is a muscle/movement disorder. Who's to say that her gut problems don't at least have SOME root in that diagnosis??

It bothers me that an insurance company would rather pay for an invasive surgery that may have expensive long-term effects or continue to pay for enteral feeding supplies indefinitely than pay for a treatment that could potentially be helpful with less side effects and move us towards reducing the tube dependency. It also bothers me that unless her doctor can convince them to cover it, I am put in the position of either having to spend hours doing research, gathering records, making phone calls, and writing letters to fight through an appeals process or give up and go with one of the other {crappy} options. And how would that make me feel about myself as a mother to not go through the appeals process because it's too hard and I don't want to do it? I think anyone who has ever been through an insurance appeals process can understand that feeling. 

Appeals take a minimum of 30 days but can take a minimum of 60 depending on the claim, which is 30-60 days that Raya gets to keep experiencing belly pain when she eats or drinks too much, not eat after 5 or 6pm without waking up in pain later at night, and not have progress towards being less dependent on the feeding tube. Insurance companies make it SO HARD to argue with them. You can't just call the company and explain your position and expect for anything to happen. There are hoops upon hoops upon hoops to jump through. You can't ever talk to the same person twice, and every person you talk to will give you a slightly different story. You file your appeal and then twiddle your thumbs for a month or two while it sits on somebody's desk, and if you happen to catch them on the right day, maybe your appeal gets accepted. I've never been so lucky with appeals though. {this is not my first denial/appeals rodeo}

Part of me thinks, what's the big deal with waiting another month or two for an appeal when we've already gotten 3 1/2 years into tube feeding. The other part of me gets very impatient and bothered by the feeling that we are not important to them, my daughter's health & quality of life are not important to them, and the insurance company is the all-powerful being that has the final say in whatever happens with her (unless we want to pay out-of-pocket). That is not a good feeling. Common sense and compassion do not seem to exist within the walls of insurance companies and sometimes even the IDEA of fighting with them is exhausting. But I'm a medical mom and that was probably written somewhere in the microscopic fine print of my job description. Tomorrow I will call the pharmacy to refill her prescriptions, call the home health company to order her supplies, and call both of her insurance companies to get as many details about their denials as I can, try to get in touch with the nurse and see if anything has happened between the doctor and insurance, and we'll go from there.

(And I might take another crack at giving her Periactin for increased gastric emptying & appetite stimulation. We haven't used it for a while and I'm curious how she might do with it now that she's a little older.)

And on a little side note, when I was reading through the list of approved and non-approved uses for botulinum toxin, I was absolutely blown away by all of the amazing medical applications for BOTULISM. Who would have guessed that a toxin could be so beneficial? God put that toxin on this earth and put it in front of brilliant scientists who saw its potential for good and developed it into something USEFUL. God is amazing, Botox is amazing, and I only hope that someday insurance companies will see its potential and let people like Raya at least try it.

And now I will go eat ice cream.


  1. This is unbelievably frustrating... I know *exactly* how you feel. Finding the strength to pick up and argue is sometimes the hardest thing to do. Stay strong. I hope you got some answers.

  2. Yup the list is long and was first deveolped to treat severe strbismus (eye crossing) which is where our journey with botox started, we have used it to treat a few issue's caused by the CP


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