The Fight for Xopenex

If you are not familiar with this medication, it is an inhalant very similar to Albuterol, similar BUT NOT THE SAME. I had a very hard time convincing United Health Care (UHC) of this fact. I had to fight this one all the way, and I figured I would post how I did it to help anyone in the same boat. Lucky for me, being stubborn in these situations pays off.

My son had been taking Xopenex since he was in the NICU. They had attempted to use Albuterol, but his heart rate and blood pressure went way too high while he was on it, so they gave him Xopenex and he responded much better. He was on it last year, while it was not on the formulary, his doctor was able to get it authorized with a medical review. Then this year rolls around. My son's doctor goes to get it authorized again using the SAME process, and UHC denies it, sending a letter home to me stating that it was not on the formulary, and that they would not authorize it because Albuterol was an acceptable "therapeutic alternative" and that was on the formulary list. I called, and spent approximately two hours on the phone trying to figure out what was going on. I explained to everyone I spoke with that these are very DIFFERENT medications, and Albuterol is NOT an acceptable alternative in my son's case, and the reason why. I was able to file an appeal to this decision over the phone, stating the differences in the meds, and the fact that it was authorized the previous year (to be honest, I could not find anyone to speak to on the phone that had a good explanation as to why it was authorized the previous year and they were currently denying it).

It was denied again. Nobody could explain why. I had to spend over an hour on the phone again before I finally could speak to a supervisor that was able to review the case and the notes. He reviewed the documentation and was able to pull up notes from the previous year. He mentioned that perhaps the appeal got denied because it did not reference these notes directly (even though I had instructed the previous rep to do so), so he wrote another appeal for me citing the specifics. I also requested and received from my son's doctor a copy of their notes stating that Albuterol has caused my son to have "tachycardia" (heart rate rises to unacceptable levels outside the normal range) when he has taken it in the past. I also sent a copy of these notes in as well.

It got denied again. The supervisor I had been working with called me to tell me it was denied, I asked to be put in touch with the person making the decision to discuss the medical concerns I had about this turn of events, but I was told it was an "administrative" decision, and not a medical one. I was a bit shocked, he indicated that he had attempted to get this case reviewed by a individual with a medical background, but they refused to do so, stating that this was a case in which they felt that they didn't have to do so, and they were only making an "administrative decision", and advised me of my appeal rights. I called one of their "resolution specialists" and attempted to demand this go under medical review, they refused to do so repeatedly, saying basically they won't review it medically because they didn't think that they had to.

I filed an appeal with the Arizona Department of Insurance, as well as a complaint about the fact that they were refusing to have my son's medication situation evaluated by a qualified medical professional, just administrators. I submitted my documentation of my experience with UHC, and the notes from my son's doctor, as well as the form my son's doctor had filled out the previous year in which UHC had used in their initial authorization of it.

The Department sent this case to an independent reviewer to make a medical determination, they overruled UHC stating "This patient has exhibited tachycardia in response to treatment with racemic Albuterol but has tolerated Xopenex for a number of years without unwanted side effects. The literature supports the use of Xopenex for patients with asthma in general and in particular those with undesired side effects from treatment with Albuterol. As such Xopenex is not unproven in this patients care  and is medically indicated. Therefore, the Insurers denial should be overturned"

It took a while, and a lot of aggravation but we finally got what we needed. It is unfortunate, if UHC would have just followed the same procedure they used the previous year, they would have saved themselves a lot of time, and effort. If they would like to reduce their costs, I would suggest better training their staff, even cutting my call times from two hours to one hour would help their bottom line (there were several of these calls), not attempting to deny medically necessary medication, in fact they wound up INCREASING their costs in terms of administrative work and manpower. Very shortsighted of them.

All Doctors Don't Always Have the all the Answers

I have always said that doctors know a lot of things, but the absolutely do not know everything, and in this case that could not be more true, there's a story I would like to share.


My son is a very active, sometimes hyperactive boy, he is all over the place a lot. My son had been struggling with potty training, I mean really straining and struggling. We told his pediatrician who told us to keep working on it and try to motivate him, they also suggested for us to go see a developmental pediatrician. We took him to a center, and the doctor evaluated him. I have said all along that I believed that there was more to his potty training than just a behavioral issue, I just had a feeling that there was something else going on. The doctor said she wanted us to put him on a potty "sitting" program, and make a reward chart for him, not once discussing any medical issues that might be causing this problem, when I asked about any medical conditions because my son is constipated a lot, she stated she thought it was more behavioral. I had already made an appointment with a GI and advised her of it, she looked at us and said "Well you can do that if you want to, but in the meantime I want him on a sitting and rewards program, that should get him trained more than anything else". I also reiterated that I wanted to rule out other conditions first, and I was going to wait to develop a behavior program or plan until he saw the other specialists, she suggested that we take my son to see a psychologist to work on this issue, and help us create reward charts.


I took my son to a GI (it had taken months to get him in), he looked at my son and his stomach, then sent him for an x-ray of his abdomen. The results? his  bowels were impacted, his colon is twice the size it should be, and his rectum is 4 times normal size, the tissues are so stretched out, not only can he not feel when he has to go, he would not able to physically push it out even if he could feel it. Poor kid, we were asking him to do something he just physically could not do. I am amazed at how stoic he is, he was going though all of this, and we had no idea how bad it was, he just takes it all in stride and acts like his happy normal self. Any rewards system or behavior program would just have frustrated and traumatized us all even more, and according to his doctor, if it had gotten much worse, he could have started to vomit fecal matter as it continued to back up.


The condition is called "megacolon", and my son's symptoms were pretty typical, there is a lot of good info on it if you Google it.


I shudder to think what might have happened if we had gone the behavioral route, it would meant a lot more suffering all around.


As it is, once his system is clear, he has to go on a whole rehabilitative program with both meds and physical therapy to get his stomach muscles functioning again, and then hopefully our potty training adventures with him will be done, there is a light at the end of a very long, messy, smelly tunnel after all : )


Again, more validation that while doctors know a lot, they don't always know everything !!!!


If you don't get an answer that feels right to you, keep looking! Don't give up! I know sometimes doctors see a very active child, or one who acts outside of the norm, and they like to just assume that there is a behavior problem, it's what they know, I've talked to a lot of parents that have told me this, and a lot (though not all) of the time there turns out to be an underlying medical cause, and once that is taken care of, everything else falls into place. Even Freud once said "Sometimes a cigar is just a cigar" which means that we should not always try to psychoanalyze everything or come up with complex answers when sometimes the answer could be a simple explanation. 


As for us, we have a medical plan of meds and sitting combined, which my son is now more than happy to participate in, the reward is being a big boy,  having things under control, and no more "accidents". No reward chart needed.