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
