Back in January, my husband's company changed from Cigna to Anthem Blue Cross Blue Shield. It was the first change in our primary medical insurance in quite some time. But it was a change that resulted in more serious issues in our household than we would have dreamed!
We have gotten Josh's growth hormones from the same specialty pharmacy for years. When that pharmacy was processing the refill for January, they realized our old insurance company said we were no longer with them anymore. I had forgotten to contact them before this, and figured it was no big deal. I would just give them a copy of our new insurance card and all would be fine. Well, they took the information on the new insurance. We now have a separate card for our pharmacy coverage - Express Scripts. But, uh oh, they don't have a contract with Express Scripts. So, we would have to contact Express Scripts to ask them how we would now get the growth hormones.
I called the number on our card for Express Scripts. The customer service agent who answered looked up the name of the growth hormones and said they do not cover this medication. He even looked for some way for that to be changed if we had a letter of medical necessity from the doctor. But, no, he did not see any way in their system to over-ride the fact that they did not cover it. So, he was not sure how we could get the growth hormones anymore.
I decided to try back with our first specialty pharmacy again and see if they could bill our insurance, get a denial letter from them, then send that denial to Texas Medicaid to see if they would pay for it. They would look into that and contact me back.
Days later, and no call back, so I called to ask again. Meanwhile, Josh is nearly out of growth hormones by now. This time, the representative I spoke to said the information I got from Express Scripts was wrong. The medication is covered by them. I need to call them back. I wasn't sure how they figured that out and the guy at the actual insurance company had it all wrong. But, I had no choice but to call back to Express Scripts to see if it was in fact covered.
Oh yes, they now had approval for the growth hormones. But you can't get them from just anywhere. They have a specialty pharmacy we have to get them from called CuraScript. They connected me to them, so I could give them all our information so we could get started with them. I gave them all the information they asked for. Now, they needed to contact the doctor for the prescription. Once that was done, they'd call me back with a delivery time. The growth hormones must remain refrigerated and are overnighted to us by either FedEx or UPS.
Days passed, Josh ran out of growth hormones. And still no word back from them. I called them back to ask what the holdup was. They said they had not yet heard from our doctor. So, I too called and left a message for the doctor. And, I also get a fax number for the specialty pharmacy and send over a copy of the prescription printed out on previous shipments of the growth hormone from the last pharmacy, along with Josh's Texas Medicaid insurance information they had not asked for originally. I wanted to make sure they were able to bill both insurances once they got the prescription ready.
In the meantime, Josh’s heart rate started dipping into the 30’s at night. This scared the heck out of his nurses and me. I called his heart doctor’s office and was told to take him right away to the emergency room for an EKG. I took him out of school and took him straight to the hospital. They did the EKG, put him on a holter monitor and sent him home.
While at the hospital, we finally hear back from the nurse for the endocrine doctor (who prescribes the hormones). She says the doctor did not think his being off the growth hormones had this effect on his heart rate. And we can go to that office, which is about 45 minutes or so from our house, to pick up an injection pen that we can use until the prescription gets filled and delivered to us.
Knowing the doctor was aware and getting the prescription to the pharmacy, and that it should be overnighted to us, I chose not to take off work again to make the long drive over to pick up the pen. But, when the pharmacy called us back to talk about when to ship the hormones, they did not show any secondary insurance information. Unless we paid the $200 co-pay (which we don’t have), then we would have to wait for them to run the secondary insurance and set up the shipment later.
More days go by, and still no word back from the specialty pharmacy. When I call them this time, they say Texas Medicaid requires a Prior Authorization form to be filled out by the doctor before it will approve the payment for the hormones. I think that is odd because they have been paying the co-pays on the hormones for years. But what do I know? So, this is when I decide not to wait any longer. I take off from work and go pick up a growth hormone pen from the doctor’s office. That is when I learn from his nurse that she contacted Texas Medicaid and no Prior Authorization form is necessary. The pharmacy was wrong. And she was connecting them with the proper department at Texas Medicaid so they could get things worked out.
That was a Friday afternoon. Friday evening, the pharmacy again called to set up delivery. It would go out the next Monday and arrive at our door on Tuesday. Well, Monday afternoon, I get a phone message stating there is again a delay in getting the hormones to us. We need to call them back for more information.
That weekend, though, once back on the growth hormones, Josh’s heart rate climbs again. And Monday, he saw his heart doctor in person. She had not read the holter monitor results, but in looking at the EKG’s and doing an ultrasound on his heart, they looked very healthy. She said she couldn’t explain why but it did look like the growth hormones had played a role in his heart rate. We are all worried that there could be pauses in the heart beats, though, when the rate gets that low. If the heart pauses for too long, it could stop and not start again. It was a good thing we had the hormones started again. If the heart rate gets too low again, like that, to let her know and we may have to see about scheduling a surgery for my son to place a cardiac pacemaker in him.
So, when I called back to the specialty pharmacy to find out what the new delay was, they said the doctor only gave a verbal order for the growth hormones and not a written prescription. And Texas Medicaid requires a written prescription to cover the co-pays. By this point, we have used 4 of the 10 doses in the injection pen we’d gotten from the doctor’s office. I asked why they didn’t ask for that in the first place and got no real answer. I was getting pretty angry with the incompetency this pharmacy was showing, and asked to speak with a supervisor. I made it clear that getting these hormones was extremely important, due to the heart rate issues. And I asked that they do whatever necessary to ensure we got these hormones ASAP (that week!). He assured me he would contact the doctor to get this handled right away.
Now, we are at Friday and no call back from the pharmacy to set up that all important shipping date, so I call them back again! They say the have had no response back from the doctor, so they cannot ship the hormones. Now, we have a couple of doses left of the growth hormones. And Josh’s heart rate has been much improved since being back on the hormones. I was very, very worried what would happen if he has to go off of them again. By this time, the doctor’s office is closed. There is really no hope that there would be a prescription in writing from the doctor until at the very earliest Monday. That would mean the absolute earliest we’d get the shipment was Tuesday. But, judging by the past dealings with this pharmacy, that was still unlikely.So, my husband went that Monday morning to pick up another growth hormone injection pen from the doctor's office (since I had to work). And apparently his visit to the office got them moving on getting the written prescription to the specialty pharmacy. Because, the next day we FINALLY got the shipment of growth hormones we had been needing for well over a month.
We are praying we never have a change of insurance that goes like this one again. And apparently when Josh ever does need to go off the growth hormones, we believe he should be tapered off, to help his heart rate not drop like this again.