/Vent (insurance sucks, may not be able to go on Humira)

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SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 5/26/2010 11:07 PM (GMT -7)   
So I'm majorly grumpy cause my doctor's being an ass and won't let me get off the Prednisone and I don't understand his reasoning!  He wants me to stay on til I start Humira but WHATS THE POINT when I have crohn's symptons, so obviously the Pred isn't doing anything anymore!  Anything good anyways!   I'm only on 10mg but its keeping my face all fat looking and I hate explaining to new people I meet that I'm on steroids like I feel I need to apologize for my face.  But why is he keeping me on this when it's not doing anything? I just don't get it.  I hate feeling like a whiny little girl complaining about something trivial and superficial but at the same time it's my face and i'd like my normal one back, thank you very much. 
 
But the main vent is that insurance and New York suck and my pharmacy coverage is capped at 3000 dollars which means awesome, I can't start Humira.  I called my insurance company and she didnt care, even when I was being a bit dramatic and was like awesome, I might die without the medication.  She's like there's nothing I can do, are regulations are defined by the State, go call them.  Right, because if I just go and call "The State" they are really going to care about little ol' me.  And apparently I can't go on medicare or whatever that stuff is called because I still live with my parents and I made too little, or something like that.  I don't know, I was really excited to go on a new medication where I actually might not be in pain all the time (that's my norm, i'm almost always out of remission, and since doctors don't believe in painkillers i just suck it up and just handle being in pain all the time.) and now that's being taken away from me. 
 
I'm just bummed.  This person doing my paperwork thinks we'll be able to find a way for someone to pay for my medication but it just doesn't sound likely.  I wish the economy didn't suck and I had a job that actually gave me benefits, instead of this crap healthy ny thing which sucks horribly.  Yay America...
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  5 day hospital stay April '10.  Have to be put on 2 antibiotics and (cry) 40 35 30 mg of Prednisone.  Turning into a walking zombie with the lack of sleep (around 2 hours a night), but at least I've been super productive!
 
Debating going on Humira...need advice! :P


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 5/27/2010 1:05 AM (GMT -7)   
Sara,
I know that it seems like the end of the world and that everyone is against you but you are going to be strong and make it. Take a deep breath and understand that a lot of the stress and problems that you are having are being made worse by the emotional side effects of the prednisone. It is hard to understand why your doc wants to keep you on it but realize that if you are still having some symptoms at 10 mg, you will be have worse symptoms with none. Hang in there and see your primary care doc for pain medication. Most G.I.s are old school and only want to deal with antispasmotic meds but the majority of us on here are on pain medicaton or have it for emergency use and we get it from our primary care doc or a pain specialist at a pain clinic.
As for the humira situation, there are other options out there for people with poor insurance or no insurance. Have you looked into Cimzia yet? It is just like humira but newer and has the best financial aid program of any of the TNF inhibitors. I did not have to pain 1 dime of out of pocket money when I was on it and they had a homecare nurse come and administer the injection every month. Remicade also has a reimbursment program called Remistart that pays for much of the medication. So that are other options out there but you will probably need to tell your doctor about them to get the ball rolling.
It is also ok to vent and get all of this off your chest. You have had this disease long enough to understand that very few people outside of the website will truly understand your daily battles. They will listen at first but become intimidated by them and shut off the listening skills. This site is the perfect place to vent and let it all out. We have all been where you are at or in similar predicaments and can sympathize.There are so many bad things that come with the Crohn's package but the one good thing is that you are able to see the people around you for who they really are. You are able to see the good people that are there to lift you up when times are hard and are able to see those that are only there when times are good. I consider this a blessing and now know the people that I choose to keep within my innercircle and the people of this website are in it. Despite not knowing each other on a face to face relationship, we are all linked with a common bond and can strengthen one another. Hang in there and always remember that this too shall pass. I always think of the saying that you have to take 2 steps into the darkness before you can take 1 step into the light. The same goes with this disease and the fact that before you can obtain remission you must go through all the testing, flares, and medication trials to find what is going to help you but you will find something that will work. Endure till the End.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/27/2010 9:27 AM (GMT -7)   
Humira also has a co-pay assistance program and, while that won't help pay any of what insurance is responsible for, I would try calling them and find out if they have any assistance available in your situation.  They may have a program available for patients in states that have a cap on the pharmacy coverage...never hurts to try. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 5/27/2010 9:35 AM (GMT -7)   
Hi Sara,
I understand how frustrating this can be. I had to do all my own legwork when my Doc wanted me on Humira and it needed to be Prior Auth'd.

Best thing to do is go to the Humira website (humira.com) and click on the Patient Assistance tab. There is a phone number there where you can call Humira and talk to them about the situation. I signed up so that it drops my copay from $50 to $5 per month. They also talk about people with no insurance or who are underinsured as you are. I have learned and as many people know on this site, you have to be your own advocate.

I don't know anything about Cimzia as it was not covered under my insurance, but it wouldn't hurt to check out their patient assistance program either. Talk to whoever it takes to get you on the medication that you need.

Good luck to you!!
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 5/28/2010 2:18 PM (GMT -7)   
Yeah, Humira is sending me information/paperwork. Apparently I have to apply to Medicaid first, get rejected, and then they might pay for it for me. Or maybe I can get Medicaid but apparently I'll probably get denied since technically I live with my parents (though people told me to lie about that, since I do have my own basement apartment but I don't know...) I'm trying to remain positive and hopefully things will work out, I just want a better quality of life and ya know, not be in pain all the time!

There are a few people working on my case, so it's nice to know I have people advocating for me and I'm not alone. I just want to start injecting myself already, heh
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 10 mg of Prednisone.   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 5/28/2010 7:05 PM (GMT -7)   
Sara, I am so sorry you are going through this and the emotional stress cannot be helping at all. I am suprised that the insurance lists humira as a pharmacy benefit. For my insurance it is paid under medical. I am not on it myself but I work for the health insurance company and many of the injectibles that are used for crohns are paid under medical. You may want to check with the insurance commisoners office in your are to see what other options you have. I know where I am the Insurance Commisioner keeps a pretty tight rein on insurance companies. Best of luck to you and I will keep you in my prayers.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 6/1/2010 5:46 PM (GMT -7)   
So today I got two letters in the mail from my insurance company...one saying I was approved and one saying that I was denied - Not Medically Necessary...

REALLY?!

I called the insurance company and was like listen, I know it's not your fault (being the poor soul who answers the phone) but I have to complain about your company...How do you deem it not a medical necessity? Are you in pain everyday? I think your Medical Director should find a medication that she can take where she can feel the effects of Crohn's and then we'll see how medically necessary they think it is!

I'm so tired of talking to inurance people everyday...

I guess I have to appeal it but I don't even get the point of appealing when my insurance doesn't cover it anyways so it's kinda like you're screwed already but not you're super screwed! Not only will we not cover you, but to slap you in the face even more, we're going to deny it too!

Again the insurance company told me that I should just call "the state" and I actually did! I vented to Tom from "the state" for awhile and eventually said "Listen Tom, imagine I was your daughter or someone you actually care about...what would you advice me to do then?" ....At least he was semi helpful....Told me to look into the new "Under 29" plan NY has where I could still go on my parent's insurance...which would be much better than this Healthy NY crap plan that I have...

....Now if only I can convince my father to look into this for me (I tried calling the insurance company but they won't tell me how much it will cost cause of privacy laws and stuff...)
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 5 mg of Prednisone, and levothyroxine (50).   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/1/2010 6:02 PM (GMT -7)   
Sara, typically an approval letter is a guarantee of payment. At this point since they have screwed up royally I would definitely look into checking with the insurance commissioner to see if they can be held liable to pay even if they sent a denial also. The approval typically trumps the denial. You really have to keep on the insurance.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

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