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Ugly day.

I try to keep a positive spin on things on this blog but also not sugar coat the truth because I want it to be an accurate representation of what it's like raising a child with complex medical issues. In reality, as long as you're dealing with multiple medical providers and insurance companies, SOMEBODY is going to be a thorn in your side. If anyone happens to be looking for warm fuzzies about the special needs life, you should probably stop reading now because this is not it. We have a lot of good days, a few bad days, and some ugly days too and this has been an ugly day. (Don't worry, Raya's fine.)

I had planned on spending my day reading my textbooks, studying course materials to prep for the quizzes I have to take this week, and prepping for the lab I have to conduct this week. I really REALLY needed to spend the day doing that stuff. Instead, once again I have spent the majority of my day trying to untangle insurance and medical provider red tape just so that my child can have one of the medications that allows her to function every day.

Here's the back story. In August, we were notified that our prescription drug insurance coverage(Medco) through our primary insurance (Aetna) was going to start requiring certain medications to be filled through Medco's own mail-order pharmacy. We are allowed 2 retail refills on any of those medications but that's it, and any beyond those 2 "RRAs" (retail refill allowances) would be charged to us out of pocket at a higher cost. Because Raya's medications have to be in liquid form, I was concerned at 1. having them shipped to Arizona when it's 115 degrees outside when I may or may not be home to get them and put them in the refrigerator, and 2. having trouble getting them on time, especially because we can't just abruptly stop these meds. Well, okay, she could survive a few miserable days without her Prilosec, but abruptly discontinuing Neurontin/gabapentin can have life-threatening effects like heart rhythm abnormalities. Because I was uncomfortable with the idea of doing her liquid meds by mail order, I asked a customer service person for an appeal form, which was mailed to me. Somewhere in that process, I found out that the RRA limit only applies to the Neurontin, not the Prilosec, so that was a plus.

Just FYI, Neurontin is an anti-seizure medication that is also used to treat a condition called visceral hyperalgesia, which is one of Raya's diagnoses. This condition causes any sensations within the visceral region (stomach, small & large intestines, etc.) to be perceived by the brain as being exaggerated. Think about how you feel when you have an upset stomach, bloating, or diarrhea and imagine feeling those pains all the time, and that's the best description I can come up with for visceral hyperalgesia. This condition is most likely one of the main causes of the excessive vomiting that she used to have. Without this medication, she would be in pain all day every day.

I took the appeal paperwork to the doctor in August. She filled it out and I mailed it in. A couple weeks later, I got a letter saying they had denied my appeal. Somewhere in there, we moved, so yes, I didn't move as quickly on this as I otherwise could have. When we got the notice of the denial of our request, I was told that I could do a new appeal so that was and still is my plan, but I knew that we would need to do a mail order refill before that could happen. We used our 2nd RRA for the Neurontin earlier this month. When we were down to a little over half a bottle, I called the doctor's office to have them fax the prescription to Medco. That should have been PLENTY of time for them to process a prescription. One of the MAs faxed it in on the 23rd. The next day she called me and asked for our member number because Medco said they didn't have record of Raya in their system so I gave it to her and she gave it to Medco. I had been told by Medco that I'd receive an email to confirm that the prescription was being processed. I realized late on Monday afternoon that I had never gotten an email and we were starting to get low on her Neurontin so first thing Tuesday morning, I called Medco to make sure the prescription was on its way to us.

A lovely woman named Trudy informed me that there was no record of that prescription being processed. (I really do mean it, she was very nice and helpful.) She told me that our doctor's office had never registered their fax number with Medco and as such, Medco could not process or fill the prescription until the doctor's office did that. I took a deep breath and told her that we only had enough to last us until Friday and asked her what we were supposed to do if the doctor's office faxing the prescription to them wasn't good enough. She gave me 2 phone numbers for the doctor's office so they could call in the prescription. I called the doctor's office and left a voice mail for the nurse. She called me back a couple hours later so I could explain the whole situation and then called Medco. They told HER that the claim for the prescription had been denied/not processed because I was appealing to be able to fill it at the retail pharmacy. This was a load of crap because they had already sent the denial letter and I was trying to fill it through their pharmacy like they wanted, so that had NOTHING to do with it. She seemed a little confused and unclear on what I was telling her vs what the Medco rep had told her and mentioned something about denials, which I now believe was in reference to the fact that Medco has been denying payment for this med since at least July anyway, but I'll get back to that in a minute. The nurse called Medco back last night and ordered the prescription. I decided to call this morning and find out what the status was and when it would be arriving.

So that's the back story. Here's today's part of the story. My day started with my phone crapping out on me, which meant that I had to dig out my old falling apart phone and put my sim card in it just so I could communicate with the outside world. Not a good start to the day. While I was phone-less, one of the specialist's offices that I've been trying to get a hold of called and left a message so I called her back. That was a frustrating phone call because she told me that if I want to know whether or not our insurance will cover the genetic testing that the doctor wanted Donny and I to have, I will have to call insurance myself and made excuses for why the doctor's office can't do this like they were supposed to have done back in January. She said that if Raya's labs had been done at a different lab, the lab would do ours for free but the lab we had them done at (which was the in-house lab at the doctor's office) doesn't do parent testing for free and our insurance probably won't want to pay for Raya to have it re-done at a lab that will do parent testing for free. She also told me that they don't have any openings for follow-up visits until at least March, which is better than June like the other clinic where we saw that doctor before told me. Then she transferred me to the scheduler and told me to leave a voice mail so the scheduler would call me back. That has not happened yet today. So that was aggravating incidents #1 & 2 for the day.

After that, I called Medco to make sure Raya's prescription was going to get here before we run out on Friday. The lady I spoke to said that the prescription was going to ship tomorrow and would take 3-5 days to get here. I told her that wasn't going to work because Medco's mistakes had delayed the process and we were going to run out before then. She looked again and realized that because it's a refrigerated med, it would be here in 2-3 days so it could be here somewhere between Friday and Monday. That was slightly better than what she'd said before but still not good enough so she told me that I'd just need to get a prescription for a few days' worth from the doctor to cover the gap. (at my own expense, by the way) At some point during the conversation, I asked her to verify that they were going to cover the medication since I had been told that they were denying it and Raya's secondary insurance was paying it for the last few months anyway. She told me that all she could see was that it was in process for $25. I got off of the phone with her and called Walgreens where we normally get the prescription filled to find out if there was any way that they could see whether or not Raya's secondary insurance would deny the claim if we tried to refill it there as we normally do. The person I talked to said that because Medco's pharmacy was already in the process of filing that claim, he couldn't attempt to bill for the same medication, and that the only way he'd be able to find out what I wanted to know was if the order through Medco was canceled.

At that point, I decided to call the secondary insurance company to find out whether or not they would pick up the claim if I tried to fill it at the retail pharmacy and Medco denied the claim. The woman I spoke to pulled up records that showed that it had been the secondary insurance paying for the neurontin at least since July anyway, and that there shouldn't be an issue having it covered. Based on that information, I decided to take a gamble and cancel the order with Medco and then have Walgreens try to bill a refill as they normally do. I called Medco again and spoke with another representative who canceled the order for me.

Then I called Walgreens and asked them to try and process a refill. At first, the guy misunderstood what I was asking him to do and tried to bill it straight through the secondary insurance, and then told me it was denied because it has to go through the primary insurance first. I know that. He tried again the right way and got a message saying that the secondary insurance was denying it because prior authorization was required. I asked him what that meant and who was supposed to authorize what. He told me that the doctor's office had to call the secondary insurance and get them to authorize the medication. At that point, panic returned because I had canceled the mail order refill and Walgreen's couldn't help me unless I wanted to pay for it out of pocket, which I obviously did not given that she has not one but TWO insurance companies, at least one of whom should be paying for it. I called the nurse back and told her what had happened with the last 3 or 4 phone calls. She didn't know what the Walgreen's guy was talking about and said that she can't just call an insurance company and tell them to authorize something but she said she'd call Walgreen's and find out how much it will cost us to pay out of pocket for a 7 day "bridge prescription" to cover the gap. While she did that, I called Medco and tearfully reinstated the order. (oh yes, I don't think I've made it through a single phone call today without bawling at some point except for the one where the secondary insurance lady told me that they would cover the neurontin, which later turned out to be false.)

This Medco lady said that since the process had been interrupted when I canceled the order, they would have to start all over again and that it would be arriving in 7 days. I told her that would not work and that we needed it sooner than that. She said that the earliest it could get here is 5 days from now, which still leaves us having to get the bridge prescription to cover the days after she runs out. Fine, good enough. Before we hung up, I asked her if she could verify that the secondary insurance was going to pay their portion of it and she told me she didn't have that information. I asked her if Medco had the information to bill the secondary insurance and she said they had no record of a secondary and that she couldn't get that information from me anyway. She said that the secondary insurance company would have to call Medco and give them that information. Um, WHAT?!? Are you kidding me?? I told her that I didn't understand why they couldn't take the information from me and that no medical provider of any kind (and we've had LOTS) has EVER told me that the secondary insurance company would have to call and give them our insurance information and that what she was telling me made absolutely no sense. Nonetheless, she insisted that the secondary insurance company would have to call Medco.

Before I called Medco again, I called the nurse back to tell her that the order had been reinstated and that we would definitely need the bridge prescription, which we will be paying for out of pocket thanks to Medco's screw-ups. I had to bite my tongue when I was talking to her because she started telling me how she knew how frustrating it can be working with insurance companies and that she'd been on the phone most of the day with insurance companies yesterday. I've worked in a medical provider's office before and dealt with making phone calls to insurance companies, and yes, it is frustrating. However, when the subject of the call is YOUR CHILD, it is COMPLETELY different than a nurse who is on the clock and getting paid to make frustrating phone calls to insurance companies. COMPLETELY different. Maybe on a different day that comment wouldn't have bothered me but today, it did. I also asked her if she'd ever heard back or talked to the doctor about all the things I talked to the nurse about last week (i.e. motility slowing down, food allergies, etc.). She said the doctor should be calling me. I sure hope so because I've been trying to communicate with her for almost a MONTH now about these same things and I'm reaching my breaking point with that too. Just because these problems Raya's having aren't life-threatning doesn't mean that it's okay for us to go unheard or unanswered for a month.

Anyway, as ridiculous as I knew Medco's request was, I called the secondary and told them what Medco had said. Ironically, I talked to the same person I'd spoken to on my first phone call to the secondary. She said that there was no way that the secondary could call Medco to give them Raya's insurance information and that she'd never heard of any provider requesting that before. I agreed with her completely but it really didn't change anything that we both thought it was a dumb thing for Medco to say. I explained a little more of the situation and she pulled up records to see if she could figure out why Walgreens guy had told me that the secondary had denied his refill request. She said, "Oh, I see. It's because of your primary insurance." *face palm* Yes. That's what I'd been trying to tell her earlier when she told me they'd cover the medication. The primary insurance's requirement of ordering was a game changer. Because of the primary's mail order requirement, the secondary was refusing to pay at the retail pharmacy too.

After that conversation, I called Medco again to try one more time to get them to take the secondary insurance information from me. "Fabian" was polite enough at first. When he asked what he could help me with, I told him that I needed to give Medco my daughter's secondary insurance information. He said he could take it and I said, "Oh good, because the last person I spoke with told me that she couldn't add secondary insurance information." When I said that, he said, "Oh. Well I need to talk with someone else about our policy on secondary insurance. I'm going to place you on a brief hold." Great. Fabulous. Then he came back on the phone and told me that Medco can't set up the coordination of benefits with a secondary insurance and that our benefits coordinator would have to do that. Again, that made no sense so rather than try to get useful information out of someone who was just regurgitating what someone else had told him, I asked to speak with a manager. He put me on hold again and got "Barry" on the line. I again explained that my daughter has coverage with a secondary insurance provider and that Medco will need to bill the secondary insurance. He pretty much told me the same thing Fabian and the earlier lady had said, which was that it would have to come from our benefits coordinator through our employer. That made no sense whatsoever because the benefits coordinator at work has NOTHING to do with Raya's secondary insurance for people with developmental disabilities that's provided by the state. I don't remember exactly how the rest of the conversation transpired because when he told me that Medco was powerless to help me and that they were just a helpless ol' 3rd party administrator, I finally ran out of patience and started yelling. He kind of deserved it after he told me, "Ma'am, I understand how you feel." OH NO YOU DON'T. You have NO IDEA how I feel! That is a REALLY REALLY REALLY stupid thing for ANY customer service rep to say, especially to someone who has spent the whole day listening to that same kind of crap from every other person they've talked to all day long.

By that point I had spent nearly 5 HOURS making these aggravating phone calls that had really done nothing other than more clearly illuminate the problem(s). Let me see if I can summarize.

1. Medco (our prescription coverage administrator) now requires us to fill Raya's Neurontin by mail order through their own Medco/Express Scripts pharmacy instead of the retail pharmacy. (and yes, I think that's shady for them to be able to deny payment for meds not filled by their own pharmacy. completely shady.)
2. Medco (insurance) refuses to bill the secondary insurance if we do it by mail order (because technically it is a Medicaid policy and they don't bill secondary Medicaid policies), but said that retail pharmacies can bill the secondary. (Refer to #1 about Medco not allowing us to refill at retail pharmacies)
3. Because our primary insurance (Medco) is now requiring mail order refills for Neurontin, they will deny the claim if it is billed by a retail pharmacy, and now that they've put that requirement into place, the secondary will also deny any claims that we refill at a retail pharmacy that fall under the primary insurance's requirement which would leave us to pay out of pocket for it.

What this amounts to is this. We are going to file an appeal with the benefits administrator who is supposedly (according to innocent little Medco) the big bad iron fist in all of this to try and get them to allow us to refill Raya's medication at a retail pharmacy so that her secondary insurance will be billed. If that doesn't work, then I will be stuck filing the claims myself every single month. Because I don't already have anything else to do. I'm already going to have to do that for this month and most likely next month as well since the benefits administrator told Donny that the appeals process takes 15-30 days.

And where were the kids while all of this was taking place? Watching Netflix all day long, sitting in the high chair eating marshmallows so they would stop knocking over the IV pole trying to dance to Halloween music, using an entire package of band-aids, climbing on the kitchen counters, not taking naps, somehow pulling out the G tube still fully inflated and then carrying it to Mommy in an owl-shaped purse, climbing on Mommy, fighting over the non-functional keyboard and mouse, spreading toys throughout the house, and undoubtedly getting into the big kids' things while they were gone to school. Do I feel like a good parent today? No, I don't. And don't bother to tell me what an awesome mom I am for going to all this trouble on Raya's behalf. If you had completely ignored your kids while spending 5 hours on the phone with people who made your blood boil & made you cry all day, repeatedly shushing them while you were on the phone, telling them to turn on another show to watch, giving them more marshmallows because you need them to be happy for a few more minutes, and then had your 5 year old ask you why you were pounding on your desk and yelling, you wouldn't feel like a good parent either and you would probably be questioning whether or not you should be attempting to go to school right now and do all the other things you're trying to do too. I don't have the energy or patience left to deal with their usual antics and I really just want the whole world to go away and leave me alone. That doesn't make me feel like a good parent/person either, but now I will just have to put on a happy face and dress everybody up in Halloween costumes to parade around the neighborhood and collect candy, most of which they won't get to eat either because of allergies or because they just don't need it.

So there you have it. This is one of the ugly days where I just want to wave the white flag and be done with all of this. Hopefully I will be out of that frame of mind by the time we have our IEP meeting at the school on Monday. :/ On the positive side, I will say that I made it 5 whole aggravating hours before I finally lost my cool and yelled at somebody and that's pretty dang good considering what I was dealing with. To top that off, I never swore at anybody and I didn't even say "hell" so I'm at least proud of myself for that.


  1. Wow. Just, wow. What a terrible day. I hope tomorrow is an easier day! And I truly hope Raya gets her meds and is not in pain. A baby in pain makes a momma feel so much worse.


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