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!

Insurance and Medical Bills

Have I told you lately that I strongly dislike adult responsibilities? My new insurance plan year started over on April 1st. That means I had no money toward my deductible before my surgery. I'm looking at a $4,550 bill, which covers the anesthesia fee, facility fee, and the doctor fee. It's so frustrating to work hard to save money only to blow it on health care shit.  I could travel the world or move out of my parents house (opportunity costs), but things like this make me apprehensive to spend money. The surgery was minor in the realm of Crohn's disease. Imagine if it was seriously a major surgery. Folks my age spend money on weddings, children, spouses, relationships, happiness, and independence while I spend my chunk on wellness. It hurts my financial heart to spend money for Crohn's crap.

I did manage to get refunded for my MRI, so I'm going to try to work my magic to hopefully at least get partially refunded for the surgery.

An Unexpected Refund

Okay, I'm sure you know that I hate blowing money on anything medical related. In fact, I hate it so much that I always opt for staying awake during my visits with my colorectal specialist rather than paying to be sedated. It's traumatic and barbaric, but it saves me money. When I had to drop fat stacks on my MRI in November, it irritated me.

The lady at the imaging place told me how much I owed, so I pulled out my insurance card because I didn't think the price on the bill had been adjusted for insurance. "I'm sorry, dear, I've already ran this through your insurance." Holy shit, I thought as I slowly handed her my credit card. Ouch, that hurt my bank account. Behold, I got a bonus at work in December and the net pay was 37 cents more than the cost of my MRI.  Isn't that kind of freaky?

When I was paying bills last night, my credit card statement said I didn't owe anything because I had a credit. It baffled me. After further review, I found that the imaging place gave my card a full refund. It feels like an early birthday present!!! I had called insurance a few times after the MRI to ask about a possible partial refund, but they kept telling me that the claim hadn't been processed yet. The refund paid my credit card bill for January and will likely cover most if not all of February's bill as well. So yeah, I'm pretty much just banking money this month. Gah!!! This makes me so happy!

My Birthday Wish

Update: I finally got Cimzia approved through my insurance... again! Go me!!!

"How are you?" When that question is directed at me, it has got to be the most confusing question that exists in the English language. Family, friends, doctors, nurses, counselors, and co-workers alike inquire about my well being. All at different levels, of course.  Nonetheless, it's up to me to figure out how I am, which is tricky.

How am I? Would "I don't know" be an acceptable answer without leading to more inquisitive questioning?  How am I compared to what exactly? My "normal" seems to constantly be fluctuating. Most days, I'm not sure if my body is telling me the truth or if I am perhaps misinterpreting it all together. I don't trust my body. How can I? The bloody thing attacks itself. Hell, I was so used to constant pain in my stomach for a while that when I burned my hand pulling something out the oven a few weeks ago it didn't even hurt. It felt like a light pinch that went away quickly, but the blistering skin on my palm told another story. Burning your hand should hurt, right?  I just figured the pain the burn caused must have been minimal compared to the other pain I had been experiencing, so my body didn't have a big reaction to it.

How am I? In this very moment, I'm convinced that I'm doing better. What exactly am I doing better than? I think I'm doing better than I was doing over the past three months or so because I have more energy, my bowels have been somewhat okay (there's always room for improvement, but isn't that case with most things in life?), I haven't felt pain in about two weeks, and I actually want to hang out with people. I even went for a run this week and it was beyond amazing. Sure, I'm totally out of shape and I was breathing heavy, but I didn't struggle to breath like I did during my last attempts that made me swear off running for a while. Last month I was certain Cimzia stopped working, but now I'm unsure what to think. I'm supposed to be getting lab work done in February that will tell me how I really am.

How am I? I'm pretty sure I'm still anemic because I stopped taking iron pills. I can't wait for my dr. to lecture me about that. I just couldn't handle being constipated all the time. I'm pretty sure my stricture is still super tight even though I'm hopeful my appointment with my colorectal on February 12th goes better than the last time I saw her. It's to the point where I'm actually wishing the scope for the sigmoidoscopy will fit past my stricture so that we can take a look at the disease on the screen. In order for that to happen, my doctor has to be able to get her finger up my ass, which was an agonizing problem last time even with lube.  Yeah, so that's my birthday wish... being able to get fingered in the ass. Maybe I need to find a special someone that would finger my ass regularly between visits with my doctor to keep my stricture loose. Doesn't that sound like a good blurb to put on a dating website? I would do it myself, but giving myself enemas is nearly impossible as it is. It's traumatizing and I'd much rather someone else torture me than me having to do the horrific thing myself.  I've always said if someone likes it in the ass, that's a sure fire way to tell they don't have Crohn's disease.

Oh, by the way, my sisters say that I must be feeling better because my humor is coming back.

Dealing with Insurance... Again

 So, when I called OptumRX to refill my prescription on Thursday, the lady told me that insurance denied coverage. After asking a bunch of questions to try to figure out why, she finally told me that my account has Medicare as my primary insurer. Umm, I've never had Medicare in my life. She said I would have to call my insurance and request, "blah, blah, blah," I can't remember what she said my insurance needed to do.

Anyways, I called UHC and I explained that OptumRx is showing my primary coverage as Medicare even though I've never had Medicare. The lady finally figured out that I was somehow switched back to my parents plan, which is also UHC, not Medicare. Thankfully, she knew the "blah, blah, blah," she was supposed to do and told me that it would take 24 hours to take effect on OptumRX systems. She also had no clue how or why I was switched back to my parents' plan.

I waited a day and called OptumRX again. This time I began by reading off my member ID number for my insurance to make sure that's what they had on file for me. It wasn't and it wouldn't let the guy change it manually in the system. He also told me I would need, "blah, blah, blah," and I told him I already had my insurance do "blah, blah, blah." So, he tried to get ahold of the "Resolutions Team." There was a long wait line because all of the call centers on the east coast were sending their calls to the west coast, so I had to wait over two hours for someone on the Resolutions Team to call me back.

Finally a Resolutions Specialist called me back and was able to setup my correct insurance on file. She also didn't know why or how I would have been switched back to my parents' insurance. At least, she was able to process my order and refill my prescription.

All of this prompted me to login to my UHC account to look at my claims. It turns out the last claim my insurance has for Cimzia was back in October. My mom is supposed be looking into seeing if my refills since then went to her claims. It appears I was switched back to my parents' insurance a while ago and it was only brought to my attention now because they denied coverage. Insurance companies are so stupid, but I can't really hate them because they save me so much money.

Hello, October

Good news: Cimzia was delivered, which means that it is covered under my new insurance plan! This makes me love my job even more. If you know me, you probably know I'm a nerd for numbers.

Before I only ever knew the estimated cost of Cimzia. Well, here are some numbers from my latest Cimzia order. The cost of Cimzia is $3,159.68 for each month's supply. I'm responsible for 10% of that: $315.97, my co-pay. After subtracting my co-pay, the insurance company has to cover $2,843.71 of the medication. Thankfully, I have a Cimzia co-pay assistance card that covers my co-pay, $315.97, for me so that I get Cimzia for free.

Once I do my October injections that will finish my third year of taking Cimzia. Over those 36 months, I'll have injected myself 72 times. Most of the time I find it easy, but sometimes my head over thinks it and the injections freak me out. Occasionally, they hurt, bleed, or bruise.  I have done all of the injections in my stomach. I could do them in my legs, but for some reason I can't bring myself to do it in my legs. Plus, I figure since it's my belly giving me the trouble it can endure to be the pincushion. Anyways, over those 36 months, insurance has saved me $102,373.56 and the Cimzia co-pay card has saved me $11,374.92 for a total savings of $113,748.48!   If it wasn't for insurance or the co-pay card, I would either be really broke or really sick! Bring on year number 4!

If that's not great enough, get a load of this...

With my new insurance plan, the co-pay for Cimzia that the co-pay card covers actually counts toward my out of pocket maximum even though that money isn't coming out of my pocket. $315.97 * 12 months = $3,791.64 towards my out of pocket maximum.


I finally got my 'Stang back. I love the leather and the stitching! This car really feels too nice to belong to me.

Goodbye, September

I don't know what procrastination says about a person, but I do know I am an expert at procrastinating. If I had the energy, I would probably be stressed. I'm not stressed, just irriated that people can't do their jobs right. I have no trouble sleeping and I don't feel worried. Perhaps I'm depressed...

After leaving five messages with my nurse over a 9 day period to get a prior authorization for Cimzia, she still hadn't returned my calls or submitted the prior authorization like I requested. So, I sent my mom to the gastro office to get some answers. I sent my mom with a copy of my ID, new insurance card, and a patient disclosure form authorizing her to access my medical records. It turns out the nurse didn't call back because she didn't think the prior authorization was necessary since she gave a prior authorization for me last year. Can you believe that shit? My mom told her that she should have at least called me back to let me know she didn't feel like doing her job. Thankfully, my mom got the nurse to transfer the prior authorization from last year to my new insurance. I don't understand why the nurse couldn't just give a new prior authorization because that would last longer.

The pharmacy finally let me schedule delivery for my Cimzia, and said that insurance approved the prior authorization. Although during my first attempt today to schedule delivery, the pharmacy said that the prior authorization had been cancelled. Nobody seems to know what they're doing. I guess if Cimzia arrives when I scheduled the delivery, none of it matters.

In other news, while my car was getting leather installed they broke a bolt when they were putting the driver's seat back into the car. Now, they have to keep it in service to fix it. At least they gave me a free rental car. Plus, the leather looks and smells amazing, so it'll be worth it.

Switching Insurance Plans

At first, I wasn't concerned about switching off my parents' insurance plan and onto my own plan through work. However, I freaked out a little with the switch fast approaching. 

What if my current doctors aren't in network? What if my medication is no longer covered? What if I have to find new doctors and I go into a bad flare while waiting for "new patient" appointments? What if I have to find a new doctor and they want me to do a colonoscopy?

Those thoughts above are toxic. The negative and worrisome mindset is addictive and exhausting. I had to shut it down and go back to being nonchalant about the whole thing.  When dealing with insurance and doctors, I expect a crisis on the horizon. On the flip side, I am an adult and I probably have as much experience with insurance and doctors as your grandma. Plus, I have others with more experience in my corner. My plan is to take it one day at a time and handle any changes as they come because worrying about the "what if's" won't be beneficial.

Before I shut down the negative thoughts, I called my pharmacy to inquire if I had any refills available for Cimzia. To my surprise, I did. Wow, I got the refill without having to call my doctor to request it because the pharmacy communicated with my doctor! Anyways, I asked if I was cleared by insurance (still my parents') for a refill, or if I had to wait for my refill clearance to become available (I can only refill once every 3 1/2 weeks or so, so the refill window is sometimes tight). To my surprise, I was cleared for a refill. Long story short, my September dose of Cimzia was covered by my parents' insurance and will be here this week, which means I have a longer period of time to figure out my new insurance plan. It's a huge relief!

Rewarded for Working Hard

If you asked me what my strengths are, I would tell you my strengths are being a quick learner and being a hard worker. I got my work ethic from my dad and he got it from his dad. I work hard without expecting praise and/or rewards for doing what needs to be done. My family isn't known for giving praise, so I grew up with either silence or criticism. I worked for my dad for 10 years and rarely got praised. It's just not his style, so it's always a little strange for me to get praised. Although I do love high fives!

My supervisor at Wharton-Smith gives me feedback on my work every week. She praises me by telling me how great I'm doing and telling me how impressed she is with how fast I catch on. Though I think she is super patient and a fantastic teacher. It makes me feel good and it takes the guessing game out of figuring out how well I'm doing at work. Last week, my supervisor took the praise a step further. She recommended me for a bonus and the VP of Finance and the President of the company approved it. I've only been with the company for five weeks and I got a bonus! I think that speaks volumes about how well I'm doing at work. In the past, typically my hard work was rewarded with letter grades, winning, scoring the most points, or just the satisfaction I get out of doing my best. This time, my hard work was rewarded with money!!!  I am falling more in love with Wharton-Smith every week.

I signed up for health benefits with Wharton-Smith. That will be kicking in September 1st. I'm feeling pretty adult-y about having my own health insurance through my company. I also will start contributing to my 401K through the company starting September 1st. After two years with the company, they begin matching. Once they begin matching I'll start contributing the maximum allowed to take full advantage of it. I also get life insurance, which will be enough to handle all of my debts (right now I only have student loan debt, but the life insurance is enough to cover student loan, auto loan, and part of a mortgage until they can sell my future house) and after death affairs, and still leave my beneficiary with some left over.

I Pooped!!!!!

Today at work, I pooped! I even pooped again when I got home! Does anyone else get excited about taking a shit? As I flushed I pumped my fists into the air to celebrate before washing my hands. It's frustrating how one week I can be pooping my brains out and the next week I could be willing to give my life just to have a bowel movement. My life often revolves around my bowel habits.  It's kind of sad how much I think about it throughout the day. I know it could be worse, but I also know it could be better. I haven't had any stomach pain lately.

Perhaps the coconut oil pills helped the constipation. However, my money is on the Senokot laxative tablets. Shh, don't tell my doctor... I probably wasn't supposed to take those because she says senna, the active ingredient, can turn my colon black. As if my colon isn't ugly enough let me turn it black. That sounds like a title to a book: The Black Colon.

In other news, on September 1st I will be switching off my parents' insurance plan and onto my own plan through work. Once I do that there's no turning back. Thankfully, it's still with United Health Care, so I'm hoping the switch won't be too difficult regarding continued coverage for Cimzia. I'm not really concerned if I have to find different doctors in network because I'm not in love with my current doctors.  At least I'm not stressing about it. I'll deal with the switch when the time comes. I'm also getting vision, life and my 401k will kick in in October. I'm growing up and it feels good! I'm also looking forward to my 90 day review in October where it's likely I'll be getting a pay bump.

Coverage for Cimzia is Denied... Or Is It?

Monday, November 2nd, 2014 my gastro nurse faxed a prior authorization form to my specialty pharmacy for insurance to review.

Friday, November 6th, 2014 my insurance was "unable to approve [my] physician's request for coverage of CIMZIA. The request did not meet the conditions necessary for coverage for the following reason(s)."

"The request for coverage for Cimzia is denied. This decision is based on health plan criteria for Cimzia. This medicine is covered if you meet the following criteria: You have positive clinical response to Cimzia therapy. The information sent in does not show you meet these criteria."

I quoted the above from a letter I received from my insurance. The letter also included a page of information and guidelines about the appeals process.

Sunday, November 9th, 2014, I reached out to a Team Challenge mentor, Tom, for advice on this situation. Tom let me speak to his badass wife, Liz, because she's the one that has handled a few of these situations for their son with Crohn's disease. Before speaking with Liz I felt hopeless and lost because I really didn't know what I should do. Liz advised me to contact insurance first and get a specific answer as to why they decided to deny coverage. Liz also counselled me to inquire about what I can do to regain coverage without having to go through the appeals process. She told me to stand firm and not to take no for an answer. She then instructed me to call her back if my call to insurance doesn't find a solution. By the end of our conversation, Liz had calmed my nerves about the situation. It was nice to know that I have someone on my team with experience coaching me to win this enduring struggle with insurance.

Today, November 10th, 2014, I contacted insurance. It took five minutes convincing the automated robot to let me speak to a human before I actually got a human on the line. The human's name was Craig. The following is paraphrased after Craig confirmed who I was and my insurance plan:

Me: I'm calling to find out why coverge of my Cimzia medication was denied.

Craig: It looks like we won't cover the brand name Cimzia, but we will cover the generic brand Certolizumab Pegol.

Me: Cimzia does not have a generic brand. I have been taking Cimzia for the past two years, which you guys have covered for the past two years. Why the sudden change in coverage?

In the meantime I'm googling "Certolizmab Pegol" to figure out where he is getting this name from because I know for a fact that there is no generic brand of Cimzia and the first hit on Google takes me to http://www.cimzia.com/. I conclude that Certolizmab Pegol is the clinical or scientific name for the medication Cimzia, which my gasto nurse confirms later in the day.

Craig: We have not ever covered Cimzia. We have covered the generic Certolizumab Pegol.

A photo of my Cimzia medication they have been covering for two years. You can see in parenthesis under Cimzia the Certolizumab Pegol name.

Me: Certolizumab Pegol is Cimzia.

Craig: No, we will not cover Cimzia.

At this point you can imagine my confusion.

Me: Okay, so do I get approved for this so called generic?

Craig: Have your doctor send another prior authorization for the generic or have your doctor contact us at an 1-800 #.

Me: So, if my doctor sends you guys a prior authorization for Certolizumab Pegol, it will be approved?

Craig: Yes.

Me: Okay, so you won't approve Cimzia, but you'll approve Certolizumab Pegol, which is the same thing as Cimzia?

Craig: It's the generic brand of Cimzia.

This ended my conversation with Craig, the dumb human voice of the insurance company.


I followed my call with Craig with a call to my gastro nurse, Osmarie. She explained that the prior authorization paper work she got to fill out had check boxes with Humira, Cimzia, or Remicade (these medications do not have a generic form. They are too new and too complex). It just prompted her to check a box, so she checked the Cimzia box. There wasn't even a space on the paperwork for her to write in Certolizumab Pegol, so she called the 1-800 # I gave her. Within the hour she got the confirmation that insurance approved Certolizumab Pegol. Osmarie told me that is just the clinical name for Cimzia and that there is no generic brand for Cimzia.


This whole ordeal has left me dumbfounded. Insurance makes me cry, shake my head, and smile at their stupidity. My medication has been approved! I call it Cimzia. Insurance calls it Certolizumab Pegol. Just don't tell them that Certolizumab Pegol is Cimzia, or they might decide not to cover it. It will be delivered just in time for my scheduled November injections.

I'm Taking My Positivity Back

I'm taking some of my positivity back. My pharmacy didn't follow through with my doctor's office, so they aren't really helping me communicate any. My gastro's assistant didn't fax the prior authorization form to the pharmacy like she said she would, or at least the pharmacy didn't get it. So, the insurance still hasn't gotten the prior authorization from the doctor either and I still don't know if this month's dose of Cimzia, which I'm supposed to inject on the 13th, will be covered by insurance or not. 

There has to be a better way for doctors, pharmacies, and insurance companies to communicate on behalf of their customers. Would other patients hire me to be their advocate, get things done, and keep track of who is slacking on their behalf? I would totally pay someone a monthly fee to handle these kind of issues, keep me updated, and most importantly to make sure things are getting done in a timely manner. It's so annoying and stressful.