or, A Tale of Medical Insurance Gone Wrong
On 1997-09-11, I tried to get three prescriptions filled. Two were filled straight away; the other was finally filled after a three and a half month fight with my medical insurer. This is the story of that fight.
Most of this narrative is written from memory. I did not anticipate this affair endangering my health, and so did not take notes on conversations. Concrete dates are backed up with documentation in my possession.
I have cystic fibrosis, and need to take several medications daily. Two of them are liquids that are nebulized and inhaled. The other is a digestive enzyme that is taken with meals. Without it, I can't digest food well and lose weight. This is a particular problem for me, since it's almost impossible for me to put on weight in the first place.
At the end of the summer of 1997 it was time to order refills for all three medications. My medical insurance contracts with a mail order pharmacy, and I can get medications cheaper than ordering at a local pharmacy. Through mail order, all prescriptions are $8, and they send all the refills at once. At a local pharmacy, it would be an extra $8 for each refill.
My supplies of these medications were getting low, so it was definitely time to restock. So off went three prescriptions and a check for $24.00 to Prescriptions Solutions, the mail order pharmacy. They usually take two weeks, so I didn't worry about the order for a while.
After two weeks had passed, I gave them a call. The person on the other end told me that the inhaled medications were ready, but that the digestive enzyme (Creon) wasn't covered by my insurer (Pacificare). And thus began three months of phone calls, waiting, lies, and eventual threats.
When I asked Rx Solutions why they wouldn't fill the Creon order, they replied that there was a generic equivalent available and that Pacificare wouldn't cover the brand name if there was a generic. Rx Solutions offered to let me cover the difference, which was about $580. I declined, and gave Pacificare a call.
They confirmed what Rx Solutions had said. So I called my doctor to get a prescription for the generic. They didn't want me to have it. According to them, the generic hadn't been well studied, and their patients who tried it experienced malabsorption, abdominal cramping, diarrhea, and loss of weight. They definitely wanted me to have Creon.
Another phone call to Pacificare. What would it take to get the name brand? I asked. They wanted a letter from my doctor. So that got written and faxed to the pharmacy. I also got a copy, just in case things went wrong. Guess what? They did.
On the next go-round of calls, the folks at Rx Solutions said that - surprise! - Creon was covered by Pacificare after all, and they were shipping the order. I got a copy of the approval fax that was sent from Pacificare. By now it was December 1, and my supply of Creon was getting low.
It was too good to be true, and so it wasn't true.
Several weeks later, the Creon still hadn't arrived. I was about to go on vacation, and needed the medication soon. A call to Rx Solutions showed that the order hadn't been filled. When I asked why, the person I spoke to said that Creon wasn't covered by Pacificare. I could pay the $580 if I wanted...
Thus we started almost from scratch again. I faxed the letter from my doctor back to the pharmacy. I called Pacificare. Creon wasn't covered. They beat me down enough to try the generic. By that point I was getting desperate.
Another phone call to my doctor. I got a prescription for the generic faxed to the pharmacy. Now it was just a little while, right? Since I figured the drugs would arrive when I was in Tennessee for the holidays, I asked that they be sent there.
Wrong. Early the next week, and only three days before I left, I called Rx Solutions to check on the order. It hadn't been sent. It seems the generic was out of stock, and they had no idea when it would be back in stock.
Another call to Pacificare, and yet another spin of the wheel: a letter from my doctor faxed to Pacificare, etc. Yes, the drugs are on their way to Tennessee.
I arrived in Tennessee, but the drugs didn't. I had to spend more time on the phone. By this time I was trying to figure out how I could stretch my medication, and was cutting down on the amount taken to avoid running out completely. I spent a good deal of the vacation with abdominal cramps. Pacificare said that an order of the generic had been shipped to my home address on December 15.
In the end, Pacificare agreed to let me get a waiver for a week's supply. The problem with that was that I was in a very small town that couldn't get the drugs easily. I'd been that route before. So I made do until getting back home.
We also discussed getting a waiver for a particular drug. According to the Pacificare person, there is only one person who reviews waiver requests. His name is John Handley. Unfortunately, I don't have his fax number. (If you're going to contact him, have prepared a fax from your doctor requesting review.)
At home there weren't any drugs waiting for me. It was obviously time to get serious; I had ordered the drug three and a half months ago, the drug had never arrived, and I'd gotten conflicting information from Pacificare.
With the help of a calm friend, I called Pacificare. After Wendy S. thoroughly reviewed my case and talked with her supervisor, she informed me that Creon was an approved drug. The reason it was approved was that "the generic was so hard to find". They couldn't send the drug to me overnight (which I needed; I had none left). They called the prescription in to a local pharmacy and I picked it up the next morning. That was 31 December, 1997. The drugs cost me another $8.00.
It's 4 January 1998 as I write this. According to Pacificare, the mail order pharmacy sent me an order of the generic on 15 December, and it hasn't arrived almost three weeks later. (They cashed my $24.00 check back in September.) Pacificare will reimburse me for the money I spent at the local pharmacy, so that's not too bad. But I'm left with questions:
Now I'm wondering what to do the next time I need a refill. Pacificare guidelines won't let me place a refill order until a certain time (a month, I think) before I run out. If, like before, it takes longer to fight to receive the drug, then I'm going to run out. If this situation recurs I will end up hospitalized. Is this what managed care is all about?
Let me make one thing plain. The pharmacy isn't really at fault here; their hands are tied by Pacificare. Pacificare is where I put the blame. They forced me to become involved, because I was the only person (aside from the people at my doctor's office) who was willing to take responsibility to see that the medication I needed was shipped. If I had left the matter up to them, I do not doubt I would not have my medication today.
1998-02-10. The order of Creon finally did show up, in the middle of January - in Tennessee.
1998-02-27. Pacificare reimbursed me the $8.00 I paid out of pocket for the emergency prescription.
Pacificare Pharmacy 800 932 3004 Rx Solutions 800 562 6223 Rx Solutions fax 800 527 0531
Last updated 3 June 2000
http://www.rdrop.com/~half/Personal/Stories/Creon.html
All contents ©1998-2002 Mark L. Irons
Next: HMO Battle, Part 2