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Veteran Member

Date Joined Sep 2009
Total Posts : 984
   Posted 5/19/2017 4:16 AM (GMT -7)   
Just got a bill from last summer saying that before insurance coverage my remicade cost over 34,000 dollars per treatment. I knew it was high but I had no idea they were billing that much! luckily they have covered it but my coverage ends in two months. I am looking into purchasing my own insurance temporarily so I can keep most of my doctors. Does any one know, if an insurance company says that remicade is not covered, is there any room for negotiation if its declared medically necessity? Because so far I'm not having much luck and to say I'm a bit scared is an understatement.

Veteran Member

Date Joined Jan 2005
Total Posts : 1825
   Posted 5/19/2017 4:26 AM (GMT -7)   
Wow the cost has gone way up since I had my infusions. Then it was around $10 grand a pop with no out of pocket for me. I wish I could help as far as coverage goes, but my best suggestion is research and ask specific questions. Be sure to find out if it is covered at the facility where you get it done, sometimes that makes a difference. Oh and check on any patient assistance programs for remicade.

I know it's expensive but if you are in the US, can you cobra your coverage? At least until you find something else so you don't have to go without your infusions.
DX with CD Aug. 1982
Gerd secondary to crohns
Monthly b-12 injections
40 mg Protonix / twice daily
folic acid

Veteran Member

Date Joined Nov 2007
Total Posts : 4365
   Posted 5/19/2017 4:49 AM (GMT -7)   
Under Obamacare, they cannot charge you more for pre-existing conditions. Remicade is a pretty accepted treatment so I would think that most insurance companies would approve it if your doctor orders it. I would stay with mainstream insurance companies like Blue Cross even if it costs you more to do so, and then call and ask to speak to a case manager of whatever insurance company you are interested in. I am spending over $1000.00 a month in premiums to cover my daughter and myself and I still have a $2500.00 deductible per person before I get any coverage. It's very expensive but much less than paying for a biologic! The Republican proposed changes are another story......then god only knows what will happen to us!! Good luck with everything!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

Veteran Member

Date Joined Dec 2003
Total Posts : 642
   Posted 5/19/2017 11:27 AM (GMT -7)   
Remicade infusions are nearly always going to be more expensive (often much, much more expensive) if you have them done at a hospital. Not sure where you have been getting them done, but a $34,000 bill sounds like it could only have come from a hospital. Doctors' offices, standalone infusion centers, and home infusions are much cheaper, and usually a much more pleasant experience. If you are looking to keep costs down, that is one thing you can do.
40-year-old male, Diagnosed with Crohn's in 1989 at age 12
Ileostomy April 2014, Revision Surgery June 2016
Current meds: Entyvio, Nexium
Past meds: Humira, Remicade, Cimzia, Imuran, 6-MP, MTX, every 5-ASA

Elite Member

Date Joined Jan 2010
Total Posts : 10021
   Posted 5/19/2017 12:12 PM (GMT -7)   
For $34,000 I'd want a week's stay in a 5-star luxury hotel with a chauffeur-driven trip to the poshest hospital in London at the end of it to receive my infusion.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Regular Member

Date Joined Oct 2016
Total Posts : 113
   Posted 5/19/2017 1:06 PM (GMT -7)   
That amount is very high. My son's most recent treatment, last month was billed at $15k but the approved amount (the amount my insurance actually paid the hospital) was $7k. This is for the double dose. When he was getting the normal dose it was around $4k. Thanks to Remicade copay assist, the copay is only $5 no matter what the dose was.

Veteran Member

Date Joined May 2012
Total Posts : 3298
   Posted 5/19/2017 5:11 PM (GMT -7)   
@bania is right, it depends on the location. When I was getting them at my GI's office, it was around $6k each time. But now that I do it at the outpatient infusion center of my hospital because I'm a hard stick and need an ultrasound machine, it's over $30k each time.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Veteran Member

Date Joined Sep 2005
Total Posts : 4786
   Posted 5/19/2017 8:21 PM (GMT -7)   
With Obamacare there has to be at least one form of medication for a condition and covered by your insurance, so it could be Remicade, Humira, Simponi, etc or all of them.

Check the formulary on the policy that you are thinking of purchasing, it will tell you if Remicade is covered or not and what your copay would be(tier).

Sounds like a hospital infusion before the discounted rate (usually 45-55% off)

My 90mg shot of Stelara is billed at $40,067 and my insurance company pays $18,771 as their discounted rate.

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!

Veteran Member

Date Joined Feb 2015
Total Posts : 692
   Posted 5/19/2017 8:24 PM (GMT -7)   

The learning hospital near me......and the infusion center....they both are very expensive. They both also have "grant" programs our GI's can get people in to.

I don't have any other answers..... I am sorry you are having to worry about this. It is not right for a medicine that people have to have to live is so expensive.

Hang in there


Dale B
Regular Member

Date Joined Mar 2013
Total Posts : 55
   Posted 5/20/2017 10:26 AM (GMT -7)   
I have Tri-Care current ran by Unitedhealth and they will not cover any of the infusion drugs. My doctor fought with them so several months and they would not budge. Had to go with Humira.

Veteran Member

Date Joined Sep 2009
Total Posts : 984
   Posted 5/20/2017 1:24 PM (GMT -7)   
Hi all, thank you all for your responses. I am deeply troubled by all of this.
I will be finishing up my degree so my college insurance that has been covering me since I started dealing with crohns will be gone.
Yes it is done at the hospital endoscopy center. The doctor insists on it so that at least one doctor from the practice can be there during infusions.
I can only find two policies available through the state health exchange that even might have my GI as an excepted provider and at least one out of the two lists remicade as not covered and the other is UnitedHealth so Im probably in Dale's position with that one. It only covers lialda and meds in that class.
Life just got real
lets all hope I can come up with something cause this is all thats separating me having another PE or obstruction should i have another flare

Veteran Member

Date Joined Feb 2015
Total Posts : 692
   Posted 5/20/2017 8:13 PM (GMT -7)   

Is it worth it to change your major? Switch directions until you have things better in hand? Then as an ongoing student you might be able to keep your insurance alittle longer. You would also have a double major. Like with business was only a few more classes for finance, marketing... Just something to buy you some time....

Just a thought. ...

06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Veteran Member

Date Joined Jun 2010
Total Posts : 1546
   Posted 5/21/2017 11:43 AM (GMT -7)   
Don't discount a plan just because of the company and make sure you research the actual plan. I am currently with United Healthcare and all biologics have been covered. However someone in my family was previously with United and had a very restrictive plan. So it's important to know the actual plan you are getting more than the carrier because each carrier has so many different plans available. Just might depend what plans they have in your state.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!
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