Sunday, June 1, 2014

Nightmares

I’m going to be typing quite a bit about chronic illness in the near future. If our trials in life do nothing more then give someone else hope then that is part of the journey worth documenting. Perhaps someone else will get a take away to use in their situation. Maybe someone else will understand just a little bit better why we might be battle weary for a bit. . .

We are very blessed to have good insurance. When you are dealing with chronic illness your worst nightmare involves not being able to get the medical care or drugs needed to fight off sickness. Like I said, we are very blessed to have good insurance. Not just good insurance but by most standards now days, it is excellent insurance. It is a perk of my husband being in ministry. Even with excellent insurance things can go wrong.

During a hospital admission in March Mike told me that he might need me to help him with an insurance issue. He was having trouble getting one of his meds. It is a very important med if you have CF. The name of the drug is Pulmozyme. In simple terms, Pulmozyme is to CF what insulin is to a diabetic. Simple terms – close enough. Mike was admitted to the hospital and again told me he hadn’t gotten a refill and might need help because he would need the medicine soon. Mike came home from the hospital and a few weeks later still didn’t have the medicine. He said something about how the pharmacy had called and said they needed more information about his insurance and he asked them to call me. Mike is dyslexic and has some other learning disabilities and these issues are not his thing. I never got a phone call and didn’t think much of it. Mike usually makes me aware when I need to step in. During another hospitalization in April Mike said again that he needed help because the pharmacy was bugging him about his insurance. Time to wake up mom. I asked if he had any medicine left and he said no. URGH!

I called our insurance company. A very polite young man named Alex referred me to their Express Scripts department because this specialty drug needed to be handled differently than most of Mike’s drugs. OK, but he assured me nothing had changed with our insurance so this should be a quick fix. I said that something must have changed because we suddenly couldn’t get this script filled. Transfer. The people at Express Scripts informed me that this particular drug was sent to Accredo to get filled. They would transfer me to Accredo. Now to understand this fully (if I’m getting it all right) you need to understand that Accredo is a pharmacy that ships drugs to us. I spoke to someone there and they told me that we can no longer get this drug from them because our insurance won’t allow them to fill the script. I would need to contact CVS Caremark. I asked if I could have that number. “That is all the information we have,” I was told. Logic told me that I needed to go back to my insurance company because something indeed had changed. I couldn’t get this medication from Accredo.

I called our insurance company. A nice young woman answered and I repeated my plight. Oh, you need to speak with Express Scripts. No, I told her, they couldn’t help me the last time. Blah, blah, blah TRANSFER to Express Scripts. I repeated my plight. Oh, we will connect you with the pharmacy that can help you with that. Is it Accredo, because I’ve just gotten off the phone with them and they can’t help me. No, that’s not the number I have here . . . TRANSFER. Hello, this is Accredo . . . sorry we can’t fill that script because your insurance won’t let us. You need to go to CVS Caremark. We have no more information.

I called our insurance company. Alex answered again, oh good, he was such a nice young man. Alex, I still can’t get this medicine because they are saying you won’t let me. Can you help? Well I need to transfer you to Express Scripts . .. NO, PLEASE, they can’t help me. Oh, well they have to. Will you please stay on the line because I am in a REALLY NASTY UGLY LOOP here? I’ve already been on the phone for this for almost 2 hours. Sure, Alex said to pacify me, I’ll stay on the phone. Same loop, only this time Alex is listening in. Express Scripts. . . . and back to Accredo. Your insurance company won’t allow us to fill this . . but wait, I have them on the phone. Alex intervenes and tells this nice man that he is to fill the prescription, what is the issue. The man from Accredo tells him he can’t fill it. After a lot of time we get nowhere and Alex tells me he will follow up and get back to me. Praise God because I’ve now spent 2.5 hours of my work day on the phone and I need to get back to work and this has fried me. I couldn’t have done any more. I give Alex the number to Mike’s doctor’s office so he can let them know where to send the prescription once he figures out where it needs to go. I get a call back the next day and Alex gives me numbers for CVS where I can get the script filled. I call Madison and give them the number. I hear nothing and the next day I call Madison. They were not able to get through to a human being with the number I gave them.

I call my insurance company. Josh answers and I give him my plight. This needs to be escalated . . . here is an escalation number. We will help you until this is resolved. Praise God because I am getting weary and weepy over the maddening situation I am in. Josh calls me back with a new number to use for CVS. I call Madison and give them the information.

The next day I call CVS and they tell me they have NO record of a script. I call Madison. Yes, we sent that by fax and have a confirmation number that they received it yesterday at 9:00 a.m.  I call CVS, oh that may take a few days to get into the system. We get thousands of faxes on that line every day. Call back tomorrow or you could have the doctor’s office call here. No, they said they couldn’t get through. . . I wait a few days. Meanwhile Mike is getting sicker by the day. You can see he isn’t able to keep up without this medicine. He starts home IVs. I call CVS. YES, they have the script . . . but they are very busy. It can take 7 – 10 days to get insurance verification . . .can we expedite? . . . Nope that’s the best they can do. Mike is getting sicker even on IVs. Sunday comes and I can see Mike is just getting weaker by the day even on Zosyn on IVs. I get him admitted to the hospital. Hopefully, this buys some time. I wait a couple of days and I call CVS. Well, we just got this script this morning and it will take 7-10 days to get insurance verification and then another 3 days to ship. AAAAHHHH, are you kidding me?

I call my insurance company. Josh answers and I get him up to date. You STILL don’t have that medicine? Nope, please can you help me? You will be my hero if you can get me this medicine. My son is in the hospital because I haven’t been able to get this medicine. He wants to come home soon. Please Josh help me . . . I will escalate this as far up the ladder as I can. We will get this fixed. Thank you Josh, that would be great. And, Josh adds, “Thanks for not being nasty. I can’t imagine how frustrating this has been.” No problem Josh, thank you for helping me. Another day goes by and Josh calls back. He gives me the name of a woman from the insurance office that hires out his company. We’ll call her Susie. Susie will is working on this to see what is going on and will call you tomorrow. Oh, thank you because my son has been in the hospital over a week and he would like to come home. Meanwhile, Shopko pharmacy in town calls me to tell me they have a script for Pulmozyme. Would I like them to fill it? Oh, you can fill it? Well there is a bit of a co pay . . . How much I ask. $5500. How much without the co pay? $5500. HELLO, that is because they won’t allow you to fill it! Oh, that’s why I thought we would check before we ordered it. The doctors in Madison were trying to get this filled and sent it to them. No go.

The next day Susie calls me. She is revved up. She has been on the phone trying to get to the bottom of all this. She tells me that Alex and Josh can’t help me that I needed to speak to her. She gives me her direct number. I feel like I am being scolded for calling Josh and Alex. I say, “But that is the number on the back of the insurance card . . .” Well they can’t help they are just eligibility . . . then why didn’t they know to transfer me to you?” I’m feeling slightly defensive because I’m not really sure what I did WRONG  but apparently there was something. I don’t really care, can we just move on to get this resolved? I can’t even remember what all was said but I pleaded with her that I need this medicine because my son wants to come home from the hospital. She says she will get back to me.

Susie calls back the next day and is revved up again. I totally get that. She tells me that the reason Accredo couldn’t fill the prescription is because AARP is Mike’s primary insurance carrier and that they require CVS to fill the script. I will have to talk to them. WHAT? Wait a minute. What is AARP? When did they become primary? You are our primary insurance! What is going on here? Who is AARP? I don’t know, Susie tells me, but that is what Accredo said. But you are our primary insurance. Someone made an ugly mistake (things are starting to crystalize now). Well, you will need to call them and fix it, Susie tells me. What? Why me? I don’t really care that CVS thinks they need to fill this. I don’t really care that AARP thinks they are primary. I don’t really care that someone made a mistake. . . You are my primary insurance. I have a prescription. How do I get it filled! I’m sorry, my boss won’t let me go any further until you make sure that CVS doesn’t ship that medicine to you. We don’t want to pay for it twice. ARE YOU KIDDING ME? (How will you pay for it twice when you are saying you aren’t even the primary – has everyone lost their minds?) I want to cry, I want to hang up, I want to enter the fetal position and never look up again. How is this happening? I can’t take any more. . . I take a deep breath and very calmly say to Susie, “Susie, you sound like you are in an emotionally charged state, would you like me to call you back at a better time?” Long silence on the phone . . . No, I want to help you, comes the reply from Susie. Oh, I’m glad to hear that because I could really use your help.” I tell Susie. Susie, you are my primary insurance. I don’t know how Accredo got the information that AARP is primary. Maybe my very learning disabled son who is in end-stage CF, during one of his drug induced stuppors, gave someone bad information. I don’t know. Does it matter? They are not going to ship that medicine from CVS without the right authorization which they will soon find out they don’t have. You are my primary insurance carrier and I have a prescription. How do I get it filled? Susie pauses, seems confused and starts the same lingo once again. I stop her as politely as possible and I repeat, “Susie, you are my primary insurance company. I have a prescription. How do I get it filled?” Susie says she will continue to work on this and get back to me. I tell Susie that it is now Wednesday and my son would like to come home this week. It has been two weeks since he was admitted. Will I be able to get this shipped this week? I ask. Susie says she will see what she can do.

The next day Susie calls back to tell me everything has been cleared up. Accredo is going to call me but they won’t be able to get the medicine this week. I want to cry but I am grateful it sounds like this nightmare is soon ending. I thank her for helping me. She gives me her direct number to call her if I need anything else. Accredo calls to verify shipping information. They will be able to get the medicine to me on Saturday. Praise God. Mike will only miss one or two doses. I’ll have Mike stay in the hospital on Friday long enough to get at least one dose of this medicine he needs twice a day, I think to myself. I’m uncomfortable that he has to miss any doses given where he is at with his disease but I feel helpless to fix this. I concede. An hour later I get another call from Accredo. It is from a Minnesota number. Hi I’m Tom and I’m going to get your medicine to you on Friday. What? Really? Yep, I just need to verify some information. We go through it ALL AGAIN. Frustrating but I am thankful we will get the medicine on Friday, God willing. We finish and Tom says, now when I hang up my worst nightmare begins. I can relate. Interesting choice of words . . . God bless Tom, he has to figure out how to get this medicine to me in less than 24 hours.

 Friday, Mike is happy to be getting ready to leave the hospital. Aunt Cathy is going to pick him up. I am grateful because I have already missed so much work trying to get this issue resolved. I call home and no medicine. Please text me when it comes. Hubby calls at around Noon. The medicine has arrived. I breathe a big sigh of relief. Praise God. No really, Praise God. Another battle won . . .

If you’ve read this far . . . thanks for listening. Keep on fighting!

 
Love, love, love

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