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.
Wednesday, November 4, 2009
The Biologics Discussion
We went to Dr. C's office and he made me another list. He told me I could choose from Remicade, Humira or Cimzia and that he may prescribe Methotrexate along with whichever biologic I chose.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
We all know these medications come with risks, especially the risk of infections. I learned that I would have TB, Hepatitis B, Hepatitis C, HIV, and HPV tests before I could be cleared for biologic treatment. My doctor also mentioned that there is a very slight risk of Lymphoma with these treatments (slight meaning about a dozen cases in hundreds of thousands of those being treated).
On the brighter side, the dr. told me that there are fewer side effects with biologics and I would take them much less frequently than the other medications I was taking at the time. Best of all, biologics usually work.
I left feeling hopeful but still really nervous.
Immunosuppressants
6-MP
The next step was to try to suppress my immune system and, hopefully, get the Crohn's under control. I started 6-MP aka Mercaptopurine aka Purinethol soon after the capsule endoscopy. About a month after I started I began to see improvements. If I ate three meals in one day I was in the bathroom four or five times instead of eight or nine. If I didn't eat three meals my bathroom trips were down to one or two. Best of all, there was one day every week or two when I wouldn't even make one trip to the bathroom.
I did not, however, see any improvements in my arthritis symptoms or fatigue. In fact, the fatigue became significantly worse. I didn't realize it at the time but I was in a fog for close to eight months. I don't know how I made it through. I woke up in the morning and was sometimes physically unable to find the strength to get out of my bed. My one-block walk to the subway left me drained and short of breath. I spent most of my day trying to gather up the energy to complete the simplest tasks at work. Getting to work and back home left me so exhausted that I couldn't do anything else. I spent at least one day each week sleeping. I was a zombie.
I was on 6-MP for eight months because it seemed to help in the beginning. At least I was seeing some results. We tried increasing my dose until I maxed out. Then we added Entocort and finally Pentasa. I guess neither I nor my doctor wanted to give up on it. Then I got sick.
I had a slightly sore throat Thursday evening. On Friday, I called my doctor. He told me to stop the 6-MP and call him on Monday if it didn't get any better. By Monday I couldn't talk. I took every cold medicine I could get my hands on and I still couldn't sleep. My throat was so raw that the mere act of inhaling made me cough. I started an antibiotic on Monday and felt better immediately.
The day after I finished the antibiotic the sore throat returned. Thankfully, I hadn't restarted my 6-MP. My doctor was on vacation and I was halfway across the country for a wedding. The day I returned to New York, I saw another doctor in the practice. He thought it would be a good idea to see an ear, nose and throat doctor just to make sure it was nothing to worry about. The specialist decided it was nothing to worry about. I finished a Z-Pak and all was well.
In fact, I was feeling so much better that I was thinking twice about restarting the 6-MP. Two weeks after I had gotten sick I breezed through a huge pile of work that had been accumulating on my desk for months. I could walk to the train without needing a nap. It was fantastic. Of course all of this new found energy came with a price - my Crohn's symptoms were as bad as ever. I put in a call to the doctor.
The next step was to try to suppress my immune system and, hopefully, get the Crohn's under control. I started 6-MP aka Mercaptopurine aka Purinethol soon after the capsule endoscopy. About a month after I started I began to see improvements. If I ate three meals in one day I was in the bathroom four or five times instead of eight or nine. If I didn't eat three meals my bathroom trips were down to one or two. Best of all, there was one day every week or two when I wouldn't even make one trip to the bathroom.
I did not, however, see any improvements in my arthritis symptoms or fatigue. In fact, the fatigue became significantly worse. I didn't realize it at the time but I was in a fog for close to eight months. I don't know how I made it through. I woke up in the morning and was sometimes physically unable to find the strength to get out of my bed. My one-block walk to the subway left me drained and short of breath. I spent most of my day trying to gather up the energy to complete the simplest tasks at work. Getting to work and back home left me so exhausted that I couldn't do anything else. I spent at least one day each week sleeping. I was a zombie.
I was on 6-MP for eight months because it seemed to help in the beginning. At least I was seeing some results. We tried increasing my dose until I maxed out. Then we added Entocort and finally Pentasa. I guess neither I nor my doctor wanted to give up on it. Then I got sick.
I had a slightly sore throat Thursday evening. On Friday, I called my doctor. He told me to stop the 6-MP and call him on Monday if it didn't get any better. By Monday I couldn't talk. I took every cold medicine I could get my hands on and I still couldn't sleep. My throat was so raw that the mere act of inhaling made me cough. I started an antibiotic on Monday and felt better immediately.
The day after I finished the antibiotic the sore throat returned. Thankfully, I hadn't restarted my 6-MP. My doctor was on vacation and I was halfway across the country for a wedding. The day I returned to New York, I saw another doctor in the practice. He thought it would be a good idea to see an ear, nose and throat doctor just to make sure it was nothing to worry about. The specialist decided it was nothing to worry about. I finished a Z-Pak and all was well.
In fact, I was feeling so much better that I was thinking twice about restarting the 6-MP. Two weeks after I had gotten sick I breezed through a huge pile of work that had been accumulating on my desk for months. I could walk to the train without needing a nap. It was fantastic. Of course all of this new found energy came with a price - my Crohn's symptoms were as bad as ever. I put in a call to the doctor.
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