One of the things that was explained to me in my initial appointment was that there are two standards of care for lyme disease in this country. One of these is covered by insurance. The other one works.
When I was paying for my visit, there were ominous warnings about dealing with insurance companies and taking the pills. I should be prepared for large out of pocket costs as the treatment isn't recognized and covered, herxeimer reactions that make you feel very ill and such. I walked out of the office grimly optimistic and not bothered by any of it because I had a diagnosis and three precious pieces of paper with Rx on them. I would fill them, take the medicine faithfully and start a new life.
I began with my prescription coverage. Two of the antibiotics would be no problem. The third antibiotic was listed strangely on the website. It said I would need $1300+ for the amount of pills I needed. The generic equizalent was listed as 0. So I called them. They said the issue was that I could only get 8 pills every 30 days. I needed 60. They said no problem. Have the doctor call in for a quantity level limit increase. Easy.
I called and talked to Dr. Lyme Specialist's wife, the nurse, who said, "The doctor doesn't do that. He doesn't deal with insurance companies because it's a waste of time. Do you remember this from the papers we gave you yesterday?" I vaguely remembered the papers, but had thought I just had to submit my own claims. But there it was in the letter to new patients: No phone calls to insurance agencies.
She went on, "If you can't get them to cover it, call this Canadian Pharmacy and get the generic brand from them. I don't know how much it costs, but it used to be $700 a month before the generic came out. Oh, and don't hand in your prescriptions to the pharmacy until you know for sure they'll fill it because once they're gone, they're gone."
For years, I had soldiered on in the belief that all I needed was a diagnosis from a caring doctor, and then everything would be fine. My husband would realize the error of his ways. My mom would offer to take the two year old whenever I needed. I would suddenly be completely taken care of by everyone in the entire world. As sick as I have been in the past years, I knew in my heart that someone, somewhere would notice, and there would be an ambulance and a team of white coats with an extended hospital stay just to make sure I was ok. I did not expect my fate to rest with three small pieces of paper that I would have to fight to keep alive.
Hmm. Well. That fantasy seems kinda dumb to me now.
Anyway, after I calmed down and blew my nose, I got a quote from the Canadian Pharmacy which wasn't too bad. I called my primary doc's nurse and explained the issue. There was a charge, but they'd call for me. Hurdle number #1 complete. Cost: 2 crying jags. She called a while later saying they had upped the limit for me, but the copay is 40%. $100 as supposed to my normal $5 copay, but it still beat $150 from Canadian Pharmacy. I said ok. She said I could just go to my normal pharmacy and pick it up. I said ok. I had about $500 left in a medical flexible spending account that would cover more than half of the year's pills.
Now, it was too late to start my new life of pills that day, so I decided to rest up. Fill the perscription that night when my husband could watch the toddler. (It costs more energy to go with a toddler than without) Start tomorrow. No problem.
I went to the pharmacy. I was glad they had a few chairs, and that there was an empty one for me.
The pharmacist was very nice and also very flustered. Apparently, no one under my new Doctor's care has ever been to this pharmacy before. "It is evening, too late to verify. Come back tomorrow. Very sorry for the wait." I was very nice to him. But now he had my 3 precious pieces of paper, and I had nothing.
So, the next day while I was waiting to hear from the pharmacy. I tried to submit something called an out-of-network claim. The charge for my initial visit plus blood draw was nearly $1000. I wasn't too worried because I have good insurance and out of network reimbursement is 70% after deductible. This was all very well until I tried to fill in the provider tax id number on their form. It wasn't on the receipt they gave me. It wasn't on the business card. I checked that letter to new patients and saw where it said, "Tax ID's are for Federal Income Reporting, not insurance company's. The Doctor does not provide this info." Crying Jag #8 (still counting from Diagnosis Page).
I called the insurance company back to ask what to do. They said, "No problem. If the Doctor does not wish to provide his tax id, we can just use his National Provider Number instead." Great. I called Dr. Lyme Specialist's number and left a message. Then I read the letter to new patients and saw that the Doctor does not provide any info to insurance companies at all, not even National Provider Numbers. She called me back several hours later. They were not in the office that day, but she did call me back with an answer, "You don't actually have to provide it, you know. It's not actually in your contract. It never is. It's public information. Make them do the work. Good luck!" Crying Jag # I've lost count by now.
I calmed down, blew my nose and did what I always do. I sat down and googled. (I was actually already sitting.) It took me approximately 10 seconds to type national provider number, click search and get his id and write it on the form.
Which made me wonder.... what is it about our health care system that would make a medical provider so leary of dealing with insurance companies that they won't even give out info that is actually public domain?
I later pieced together the answer to this question and will save it for another time. But, for now, I am simply resentful of being placed in this position. I do not want to fight anyone, anymore. Years ago, I decided to stop fighting and just wait for the herd of white coats to decide what to do with me. I am too sick and too tired to deal with any of this!
So, it was too late to start the pills that day, but the pharmacy called that my perscriptions were filled. I decided to rest for the afternoon and go that evening when my husband was home to watch the toddler. Start Tomorrow. No Problem.
That evening, I went to pick up my new life in a bag only to find the antibiotic in question had only 8 pills. Slump.
"Excuse me, there are supposed to be 60 of these."
After some queries and questions and figuring, I am told, "We can give you the rest of the pills, but it will cost $230."
"But, I was told it would be $100."
After some queries and questions and figuring, I am told, "Your insurance has only approved the increase for the more expensive name brand, not the generic.
"Oh, I'll just take the name brand, then."
"We don't carry the name brand. We can order it, if you like. It will be here Monday."
Energy Expense, No Return. Wastefull. They still have my pieces of paper, and I still have nothing!
I went back on Monday afternoon. There was a line. The seats were all taken. There were only two prescriptions in the bag. Sigh. They checked in the back and finally found it. The clerk seemed a bit miffed that I wanted to check everything before I signed for it, but I can't really save her from that at this point.
Energy spent, but I have my precious cargo.
I have treatment for 30 days. And then, I have to do it all over again. Insurance in this country seems haphazard and arbitrary. I don't really have a guarantee that they will approve the quantity limit increase next month. I don't have any guarantees at all. It doesn't matter how much my doctor knows or how much tme he has spent studying and learning about the spirochete. The people with actual, practical, hands-on knowlege do not make these decisions. Dr. Lyme Specialist has been around long enough to know this. But, it was new to me. This week I felt small and powerless. And afraid.
I worry for the ones who are not as persistent as I am.
Survey: Have you ever felt so uncertain that you broke down before you started?
