Happy Chrohniedays!

I hit up the pharmacy this afternoon for my meds. It's only been a month since my insurance company started covering my prescriptions at 100%. I still cannot believe that I can walk into the pharmacy and walk out with my script without any money changing hands. It's like a layer of stress has been lifted from my shoulders. No more claim forms. No more angry calls to the insurance company (well, as soon as I get the rest of the flex payments they owe me for 2011).

A few weeks ago, my husband got the cold everyone seems to be passing around. I was fine for a week or so, then a coworker came down with a different variation of the bug. I guess my immune system had enough and I got it too. I feel much better than I did a few days ago but it seems to be lingering. I skipped my Humira last week (do you guys do this when you get sick?) in hopes that a little immune boost would do the trick. Who knows if that helped at all. My voice fades by the end of the day and my right ear feels a little waterlogged. I should probably call the doctor but, seriously, who has the time right now?

Holiday festivities begin here Thursday with an airport run then a quick trip in to the city to see the Rock Center tree before driving to my parents' house. I purchased my last Christmas gift today and wrapped everything. I ran out of Christmas paper three quarters of the way through so my niece is getting some books wrapped in flower paper. What? There's a recession!

I'm feeling pretty calm this year. I found some good sales, got some good gifts, have all my stuff together four whole days before Christmas. I'm looking forward to a stress-free holiday week and wishing the same for all my Crohnies!

Update

I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.

The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.

I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.

I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.

Broken Record

Same old story: I'm battling it out with my insurance company again.

It turns out I haven't been getting any money from them because there's a glitch in the system. After I submit my claims for prescription reimbursement they get halfway through the process and the name of the prescription is removed from the claim so they reject it. I had to resubmit every claim since FEBRUARY.

I then found out that the reimbursement check for a trip to see a doctor in March was sent to the doctor. I paid in full, $570 dollars, before I left the office and the insurance company sent more money to the doctor. At this point they owe me about $4000 dollars. Do you know how many paychecks that is?

I am beyond frustrated. I do not know the words to express how I feel about this situation and the fact that I am going to have to deal with this for the foreseeable future. I could scream.

Health Care Reform

I will be honest, I haven't found the time to read the details of the health care reform bill that will likely be passed or shot down by Congress this weekend. I know generally what it's about but I also know there are a lot of rumors flying around the web. I don't know exactly how this bill will affect me but I doubt anyone really knows. I do not know if this bill is the right move or if it's a step back. This is what I know.

I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.

I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.

I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.

This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!

You cannot convince me that we do not need health care reform.

Weekend Madness

My weekend pattern continues. I did just fine this week but Saturday and Sunday were a different story. I did have an egg for breakfast each morning this weekend but I don't think I do that every weekend. Or do I? Hmmm... Anyway, as I sit here typing my stomach is churning away. I'm sure I will have to take a break in a minute. Those heavy butterflies are making their way through my abdomen.

I'm thinking it's time to see an allergist in case I'm eating something that's making me sick. I've said it a million times but I need to do it. I will put it on my to do list for Tuesday. I'm sure it will take a few days since I will have to deal with the insurance company first. The insurance company always adds about seven layers of annoyance to any search for medical care. I feel my blood pressure rising just thinking about the initial phone call. Yuck.

This weekend I am also having a lot of arthritis pain. I spent more time on my feet yesterday than I normally do. This morning I walked to the laundromat with a heavy bag on my back and I did a lot of walking this evening. It's pretty cold out there which probably doesn't help. So there are the reasons my joints are bothering me but I have no explanation. Why doesn't the Humira work for both? I have to call my Gastro for blood test results on Tuesday so I guess I will seek his advice then.

On a good note, I am feeling more confident lately and am trying to get out more now that I am feeling better. I've been busier this past week than I have in a while and it feels really good. I am hopeful.

The End Is Nigh (I Hope!)

The past two months have been a challenge to my sanity. Working out a way to begin biologic treatments has become a part-time job. After wrestling with the insurance company for weeks then spending a few days on the phone with the Humira people, I have finally FINALLY picked up my starter kit.

I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.

Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.

I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.

My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:

Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?

Am I going to tolerate this stuff?

Should I really be injecting something into my body that has only been on the market for seven years?

What if biologics don't work for me?

I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.

The Long Road to Humira

My doctor left choosing the biologic up to me which meant it was up to my insurance company. Brilliant. I have a long and sordid history with my insurance company and knew from the start that this wasn't going to go well.

I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.

My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.

So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.

A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.

I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.