I finally received the results from the drug level and antibody test. My levels were great and no antibodies were detected, which was a huge relief! Remicade has changed my life and I'm thrilled the results correlated with how well I've felt since I started taking it.
My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.
Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.
The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end. As December 6th approaches, I'm sure it will get more difficult to accept. It's already harder to accept today than it was yesterday, but that is likely because I set a date.
Friday, September 29, 2017
Monday, September 18, 2017
I Couldn't Answer It
I have a confession: I may have been a coward today. Even though I have been expecting a call for 27 days from my colorectal specialist to schedule my bowel resection surgery , I did not have the courage to answer my phone when the scheduling lady called me. When I looked at the caller ID, my heart sank and my hands started to shake. I couldn't answer it.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
Sunday, September 17, 2017
That Bitch, Irma
By the time I got back into town after Labor Day weekend and went to the store to see what I could get to prepare for that bitch, Irma, the selves where the non-perishables belonged were already empty. One of the few benefits of living with my parents is that they prepared well enough for the hurricane so that all I had to do was basically just show up at their house for shelter. I know it's not very adult of me, but my preparations only included:
- Helping board up my parents house
- Parking my car at my uncle's warehouse
- Packing my duffle in case shit got real
- Charging my phone and back up batteries
- Charging my electric toothbrush
- Putting batteries in flashlights
- Buying bread, green beans, and chips
I probably should have been more concerned than I was, but I did not allow everyone else's stress and worry get to me before the storm. We lost power around 8PM Sunday, September 10th, so we were without power and A/C early on. It didn't take long for the house to get fucking hot! By 9PM, I was asleep on the tile floor in the kitchen with my pillow, sleep mask, and Beat headphones blaring music. The tile was the coolest spot inside and I couldn't hear the storm with my headphones on. I woke up briefly abound 5:30AM and moved to my bed for about two hours until the heat was too much to bare. So yeah, I slept through hurricane Irma.
It was still very windy Monday morning, but I helped clean the yard and move debris to the road. Although the neighborhood lost a lot of trees, the houses didn't have any major damage. The lake was up to the fence in the backyard and all of the docks were under water. As soon as our county lifted the curfew at 6PM on Monday, I went to my uncle's warehouse to get my car. We had gotten a generator and everyone claimed a spot in front of the fan without any room for me, so I slept on a patio chair on the porch with the noise of our neighbor's generator on one side and the noise of our generator on the other. Again, I used my sleep mask, and beat headphones to get to REM.
Tuesday morning I went over to my uncle's house to help him clean up his yard and the mess that was left behind after his sun room roof blew off. I went into work at 2PM and left around 5PM. At home, we had more fans plugged into the generator on Tuesday night! It was still too fucking hot to get comfortable though and I found myself sleeping on the porch for the second night in a row with the annoying generators.
Irma taught me that I am higher to maintain than I realized. I need air conditioning! Please, spare me the whole "it could have been worse speech". Plus, it's difficult to get ready in the dark with a flashlight and cold showers are not my cup of tea. I wasn't stressed before the storm, but I was certainly stressed and uncomfortable after the storm. My bowels were proof with irregular BM's and some stomach pain. Thankfully, running friends with power offered to let me stay with them! I ended up staying two nights (Wednesday and Thursday) with Badass Doreen and her family. Her kindness is overwhelmingly amazing and I owe her big time! It was great getting to know her and her family better.
I went back home after work on Friday because our power came on. Things are slowing getting back to normal...whatever that is.
Sunday, September 10, 2017
Second Long Story: New Gastro
It has been a long time coming for me to switch from Dr. V. to a different gastro. I went from my pediatric gastro to Dr. V., so I've been his patient for over a decade. During that time, I have always had frustrations with the office staff and his numerous nurses over the years. They rarely return message and they often ignore requests (refills, prior authorizations, etc.) Their Patient Portal has made communication with them a little easier and kept them more accountable, but I'm still shocked whenever they get back to me. Recently, my nurse left for the day when she knew I was on my way to the office to get a test kit from her.
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
First Long Story: Free Remicade Drug Level and Antibody Test
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!
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!
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