Wednesday, March 14, 2012

The Quest for Amphotericin, or, United Healthcare Doesn't Care if My Child Can Pee

You would think getting a prescription would be easy. Someone wants my money, right?  Not when the prescription you want it Amphotericin and your insurance company is United Healthcare.

Hayden has had minor trouble urinating in the past, but two weeks ago Monday before school he told me "the pee is stuck."  I was really scared for him, and was going to take him straight to the doctor, but he ended up going when we got to daycare.  As soon as I dropped him off at daycare I called his DAN doctor (who wasn't open yet.)

I was working in two different schools that day, neither with cell reception, so I had to give out the number for the land lines of the school rooms I was in.

Call number 1:  I gave them the phone number for the science office at Perry High School.  On the message I told them I needed to fill the script for Amphotericin, but was there anything else I could do in the meantime to help him?

[The doctor had told me about Amphotericin before, but asked me to fill it with a compounding pharmacy called Lee Silsby.  A few months ago I filled Hayden's B12 script through Lee Silsby and my insurance denied the claim because they were not a participating pharmacy.  So I knew I needed to call United Healthcare and find out what pharmacy they did approve of, but hadn't done so yet because it hadn't made the priority list.]

Call number 2:  As I hang up the science teacher says, "I don't think the number you just gave can receive outside calls." We test it.  It can't.  I called the nurse voice mail back and gave them a different teacher's number.

Call 3:  After lunch I went to work at a different school, Perry Academy, and called to give them that  number.  Since this was the third call, I didn't leave Hayden's birth date, just my new work number and my cell.

4. I received a voicemail on my cell from the nurse at 5 pm saying that they had received my last message (someone had deleted the first two) and therefore I needed to call back with Hayden's birthdate.

Since I knew I needed to call United Healthcare anyway, and it was 5 pm and they were closed, I decided to wait until Tuesday, call United Healthcare and get their answer about the compounding pharmacy, and then call the doctor back.

5.  The doctor's nurse called my cell in the morning because they were worried that I hadn't called back. I told them that Dr. Hulseman had suggested at his last appointment that he take amphotericin.  They said they would ask the doctor and get back with me.

6. I called the number on the back of my insurance card and told them I needed to know what compounding pharmacy was covered under insurance. They said they needed the name of the script in order to give me a pharmacy name.  I gave them the word "emphaterasin."  "It's not on our list."  What does that mean?  "Well, that means it's not a specialty prescription. Have you tried calling Walgreens?"  Really?  Why would my doctor tell me to go to all this trouble if I could just go through Walgreens?!?  But I said, Ok, I'll call Walgreens.

7. The doctor's nurse called around 2.  They had called in a script to Lee Silsby pharmacy for amphotericin. (I had been spelling it wrong.)  I told her that insurance had told me to try Walgreens.  She said "No, it does need to be compounded.  Ask them if they take another specialty compounding pharmacy, like Nora, Apothecary, or Dr. Aziz."  Right. Will do.  "You also need to give Hayden 1/4 tsp of baking soda in a tsp of water once or twice a day. Stop his calcium supplement until his urination improves.  Call us if he gets worse, and call us in a week regardless."  [Side note, I made poor Hayden eat the baking soda.  If you ever want to eat something really terrible, try baking soda. Poor guy.]

8. So, the next day, I called the number on the back of my insurance card again.  They told me I needed to call their presciption service, Medco.

9. Called Medco.  They told me I needed to call their Specialty Scripts service, because it must be a specialty script.

10. Called the specialty scripts number. They told me, again, to call Walgreens because it still wasn't on their list, even with the correct spelling.

11.  Called the Walgreens on Southport Road.  "We don't compound here. You need to call this number to find out which Walgreens in your area does compounding. Their number is  1 866....

12. Called 1 866...  They said the Walgreens on 31 does compounding, so I should call them.

13.  Called Walgreens on 31.  "We don't do compounding."  Um... I was given this number and told that you did.  "Let me transfer you to pharmacy."  Yes, please do that.  "Pharmacy." Yes, I need a compounded script and was told to call you. "We don't do complicated compounding.  What script is it?" Amphotericin. "Hmm. I've never heard of that. You'd better call our compounding center on Raymond Street. They open at 9."  (It was 8 am).

14. Waited until 9, called Raymond Street Compounding Center.  "I don't know if we can fill that or not.  We need your doctor's office to fax the script to us at this number so we can look at it."  Geez!

15. Called doctor's office back. The nurse was not happy [with my insurance].  "You need to call your insurance back and tell them that you can't get it compounded at Walgreens unless they can guarantee that it is gluten-free.  Tell them he needs it compounded by a specialty pharmacy that can guarantee the script is gluten-free because of ICD9 code 112.85 candidal interitis."  Got it.

16.  Called United compounding pharmacy back. They told me to call the number on the back of my card, not the compounding pharmacy. You need the regular United Healthcare number.

17. Called number on back of card. "Have you tried Walgreens?  You probably need to call Medco scripts again."

Now, I'm the kind of person who tries to be polite on the phone because I know it's not going to help my cause to piss anyone off. But at this point, I flipped.

"Listen.  I have called those numbers, and I have called your specialty pharmacy, and I have called Medco.  And I have called Walgreens, who told me to call another Walgreens, who told me to call another Walgreens, who told me they don't even know what this script is.  But the specialty pharmacy Lee Silsby could have filled this prescription for my son on Monday.  My son needs this prescription because he can't pee. And I need to figure out how to get it for him. And it needs to be gluten free because of ICD9 code 112.85.  But apparently you won't pay for me to take it to Lee Silsby, so I need to know who you will pay for, and I need to know today." (At this point it was Thursday.)

The lady said, "well, you could just fill it through them and submit it to us afterward."  Yes, last time I did that for his B12 nasal spray and you denied the claim, and it was for $75. This one is $90.   "If it is denied you could file an appeal."  Alright, fine.  I'll just do that. [Silence.]  What is the address for appeals?  "PO Box 30432...."  Ok, I will do that. Thank you. {click}

18.  Called Lee Silsby. They could fill the script today. "Do you want liquid or pill?" I asked how big the pill was, knowing that the liquid probably tastes terrible, so if the pill was small enough it would be easier. "I don't know, but I can find out."  Can you please just fill it!  If you find out the pill is large, just switch the order to liquid, but don't call me back! I just want to get this filled! "Ok. But, since it has to ship cold, and won't ship until tomorrow, which is Friday, it would have to wait and ship Monday.  So he should get it Wednesday."  Sigh.  Ok.

"We'll include a paper for your insurance."  Last time they denied it.  "Yes, you need to make a copy of it before mailing, because they will try to deny it and say the form is not filled out correctly.  If you have a copy of the form, you can resubmit it."  In other words, this happens a lot. Not that I'm surprised, as this is not my first run with insurance, but the insanity of the system infuriates me.

So, the following Wednesday the medicine arrived, and Hayden has been taking it since, twice a day.  Within a few days I could tell he no longer had to push to urinate. (The doctor had originally told me this was a result of too many oxylates in his diet, forming crystals in his urinary tract.)  He told me after  maybe three days, when I asked, that it wasn't stuck. "Nope, it's not stuck!  And it doesn't hurt in my diaper anymore!"  So at least this has all been worth it, and we didn't have to go to the emergency room.

And, I just want to say how much I appreciated the kind people at Lee Silsby pharmacy and Dr. Hulseman's office. The doctor's office called me a week later to see how he was doing when they hadn't heard back. I thought that was really nice.


Coming up in my next blog post:  Rylie's Poo Adventures  or  What nearly drove Sheila over the edge

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