She explained the different 'paths' you take with pharmacuticals. This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.
Path one was what I was on and it's not working. You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission. Typically start with salfasalazine or a mesalamine like Lialda or
An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids. Get you into remission. Then get you on a meslamine or immune suppressant like 6MP
When immune suppressants like prednisone and 6MP don't work you have to go down a different path. These are pretty severe cases like cronic ulcerative pancolitis. None of the above seems to work, you're constantly inflamed and suffering from symptoms. That's where I'm at. Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.
Next path is 'biologics'. These are intravenous drugs that both get you into remission and maintain it. There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab. Some are self administered injections and other's are "infusions" done at a clinic via an IV. These things are crazy expensive and I'm about to start on Humira.
So I was perscribed Humira. I go to my perscription drug provider and it takes me a few days just to figure out this:
Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738
Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465
Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses). Now almost all of the manufacturers of these drugs have some sort of assistance program. Some are better than others and they all have different requirements and procedures for getting approved. There are also programs out there affiliated with churches and other non-proffits to help. We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.
Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.
My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!
So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday. That's when I go in and learn how to give myself the shot.
If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.
REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!
Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P
On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!
I've looked into other drugs they wanted me to take too. They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.
Monday I take my first doses. I start at a high dose then over the coming weeks I taper down to a maintenance dose. This should get me into remission and then keep me there. We're all praying this works. I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet. Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again. This December it will be a year of constant flare up symptoms.
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