I could make a couple of long stories short by just posting about the outcomes, but I have some time to kill while hurricane Irma does her thing. Plus, a story is incomplete without conflict and struggle.
First Long Story:
As you know I was supposed to get a blood test done that measures drug levels and antibodies with a Prometheus test kit before my Remicade appointment on Tuesday, September 5th. Lynn, the bigger sister I never knew I needed, is one of the newest additions to my arsenal of friends. Most of the time, I don't have the energy or the will power to give a shit. Basically, I'm lazy because I'd rather take a nap. Thankfully, Big Sister Lynn gives lots of shits. She stepped up and scheduled a conference call with one of her other friends with IBD on Wednesday, July 30th. While on the call it was suggested that I verify that my insurance will cover the $2,500 cost of the Prometheus test as well as to look into finding the free test Remicade will pay for twice a year.
When I called Prometheus, it was estimated that my insurance would bring my co-pay down to $500. Even though that meant I would save $2,000, $500 seemed like a lot to spend on lab work. Since I have saved over $100,000 by using co-pay assistance programs in the past, I asked if Prometheus had a co-pay assistance program. Prometheus has a financial assistance program. Contingent upon being approved for the financial assistance program, it would bring the co-pay down to $175. I received the financial assistance application, but I didn't fill it out.
Labor Day weekend was fast approaching, which didn't give me much time to figure this out before my Remicade appointment on Tuesday. On Thursday, July 31st, I had left a voicemail and messaged my Remicade nurse to inquire about the free test that Remicade will pay for. Desperate without a response from my Remicade nurse, I messaged my gastro and his nurse to inquire about it on Friday. To my surprise, my gastro nurse called me within fifteen minutes. Unfortunately, she did not know anything about Remicade paying for the test. My gastro nurse surprised me again when she called back to say she consulted Mr. Google and found that Miraca Life Sciences is the lab that apparently partnered with Janssen (Remicade's pharmaceutical company) and she had Micaca Life Sciences test kit in the office because it's the same kit they use to measure drug levels for Cimzia patients. She let me know that the office would close at noon and I told her I was on my way. I got off the phone with her at 10:40am, spoke with my supervisor, and I was in my car at 10:45am to go pick up that fucking kit. I arrived at the office a little before 11:30am to find that my gastro nurse had already left for the day even though she knew I was on my way. Thankfully, the people at the front desk helped me find the test kit I thought I needed.
After I picked up the kit, I had an appointment with my primary care doctor and I took my mom to one of her doctor appointments. It was 4pm on Friday by the time I could do my own research. I wanted to confirm I picked up the right test kit. First I called my insurance company. It took three people a total of an hour and a half to tell me that the Prometheus test and the Miraca Life Sciences test are out of network and would not be covered. I explained that I am not going to pay $2,500 for the test and asked them what my options were to make it more affordable. The only thing I could do is have my doctor call in to request a "Gap Exception", which would provide full coverage; however, the Gap Exception is contingent upon the insurance company's approval. Insurance could not confirm that the Gap Exception would be approved, nor could they explain factors that could cause it to be denied. At this point, there was no way I could get the Gap Exception, even if it was approved, in time for Tuesday. Insurance did not know anything about Remicade paying for this test.
My next call was to Prometheus because I wanted to inquire if the financial assistance, that was contingent upon the application that I never filled out being approved, would be based on a percentage of the estimated co-pay since my insurance will not bring it down the $500 they originally estimated (would that percentage now be based on the full $2,500), or if the $175 was a fixed co-pay amount for anyone approved. As expected Prometheus had already closed for the holiday weekend.
I have a RemiStart co-pay assistance card for Remicade, so I called the number on the back of the card. RemiStart is affiliated with Janssen, Remicade's pharmaceutical company, but no one there knew of the free test I inquired about. They were able to confirm the only "insurance code" the card applies to is Remicade and I cross referenced the code they gave me with the codes I had for the drug level and antibody test. They didn't match, which meant they were right. Afterwards, I tried calling Janssen directly, but I got an automated machine letting me know they would be back on Tuesday and to call 911 if it was a medical emergency.
My last and most promising call was to Miraca Life Sciences. Thankfully, I was able to speak with someone. He didn't know about Miraca's partnership with Janssen or the free test, but he e-mail three of his colleagues that would know about the free test and would have one of them contact me on Tuesday because they had all left for the holiday weekend.
At a loss for what I should do, I pretty much decided that I was not going to spend $2,500 to measure the Remicade drug levels and antibodies in my system because I am still fairly certain Remicade is working. I expressed my frustration with friends. When I returned home from my run on Saturday, September 2nd, my mom let me know that my Remicade nurse left a message on the house phone. She told me she had the kit for the free test at her office and she can draw my blood before she starts my Remicade infusion on Tuesday. All of that headache for it to be as simple as my Remicade nurse already having the right kit to get the test for free.
The kit she had was an entirely different kit from the two kits I had (Prometheus and Miraca Life Sciences). Her kit actually had Janssen's and Miraca Life Science's name on the box. My Remicade nurse confirmed that she has gotten the test for free for other Remicade patients and assured me that I would not have to pay $2,500. I gave her a guilt trip as to why my gastro and his nurse did not know about the kit for the free test. She plans to discuss it with them and switch out their kits to the kits that allow you to get the test for free. Miraca Life Science did call me after I had already gotten the free test on Tuesday, so I let the call go to voicemail.
Now we wait for the results!
