Tysabri cost - what it costs and what my Insurance is paying

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Regular Member

Date Joined Apr 2005
Total Posts : 103
   Posted 6/10/2008 2:43 PM (GMT -7)   
People always talk about what the drugs cost. And I've always guessed. Last night, I asked my wife to log into our Insurance account to see what the costs were. Much to my surprise, they were as follows:

Cost billed: ~6400.
Cost paid (due to agreed upon rates with Dr's office, etc): ~2100.

It may have been a hair more... but it was a lot less than I expected.

So why can't i (if I lose my insurance) pay the 2100 out of pocket vs. the 6400? Oh wait... that's the $64,000 question!

BTW - Aetna POS insurance in this case.

What are others paying for various drugs? I know my remicade used to be over 5k per dosage. Humira I never knew b/c I was on the study.


Regular Member

Date Joined Oct 2005
Total Posts : 168
   Posted 6/10/2008 2:58 PM (GMT -7)   
I believe that my insurance normally pays 80% of all services, including the remicade. But my out of pocket cap is $1000, and i met that months ago. so actually, until the end of the year, my insurance pays everything 100% Sorry!! the military insurance is good to us...

do you have an out of pocket cap? it's also known sometimes as a catastrophic cap...

so, your seriously have to pay the remainder of the 6400?
diagnosed: Crohn's Aug 2005
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
drugs: Asacol, Imuran, Remicade, Humira, Prednisone, Canasa, Fentanyl, Warfarin, TPN

Forum Moderator

Date Joined Mar 2003
Total Posts : 10405
   Posted 6/10/2008 3:33 PM (GMT -7)   
My remicade gets billed at $8,000 and the insurance pays just a bit over $4000. Because it's given in the doctor's infusion center, it is treated as an office visit and I pay $35.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 6/10/2008 3:35 PM (GMT -7)   
When I did Remicade years ago it was super expensive is all I remember. But I got it through my mail order prescription.
I think I paid like $25 co pay for it. They fedx'd it in a cooler right to my house. I just had to keep it in the fridge until my
appointment and then take it with me. So it worked out great.
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 40mg

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 6/10/2008 4:08 PM (GMT -7)   
My Tysabri is $7481 per infusion. I have a $1500 out of pocket annually and then they pay the rest. I believe Blue Cross has determined the "acceptable" amount to be $6700.
Oh, but right now my infusions are being done at a hospital infusion lab.  I am wondering if the cost and payable amount will go down if/when I move to my doctor's office for infusions.

--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl

Regular Member

Date Joined Aug 2007
Total Posts : 349
   Posted 6/11/2008 5:27 AM (GMT -7)   
UHC was billed $7400 for my tysabri and they paid $7200. If I had not met my out of pocket I would have had to pay 20%
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). Off predisone and on tysabri 4/3/2008

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 6/11/2008 6:58 AM (GMT -7)   
Doctor's can set their payments anywhere, and it's absolutely meaningless when insurance is involved.  When a doctor agrees to accept a particular insurance, they are also agreeing to accept what the insurance believes is an "acceptable" charge for services.  That may be only a couple hundred dollars for something that the doctor says they charge a thousand for.  They can't come after you for the difference, only the co-pay or your 20% or however the insurance is set up.  At least, that's the way it works in the US.  Any time you use your insurance you should receive an Explanation of Benefits (EOB) from your insurance company that explains what was charged, what was paid, what was forgiven (the difference between the actual charge and the "acceptable" amount), and what you owe, if anything.  I definitely suggest you read your EOBs.  They're eye opening, to say the least.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 6/11/2008 8:52 AM (GMT -7)   
When I was getting Remicade, I paid 80% until I hit my $1000 out of pocket max and insurance paid the rest.  So, on the 2nd treatment, I hit my max and it was covered the rest of the year.  Insurance was paying anywhere from $4000 to $10000 each time, depending on where I had it done (home vs. hospital).  Now that I will be doing Humira (or Cimzia would be the same), they can't bill it through insurance anymore, they have to bill it through the pharmacy.  Since they are speciality drugs, my copay will be $200 every 3 months.  Insurance's cost is like $4000 for the Humira or $7000 for the Cimzia.  Those of you who only pay a $25 or $30 copay or office visit, you are extremely lucky!

...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4

not creative
Regular Member

Date Joined Mar 2007
Total Posts : 469
   Posted 6/12/2008 8:19 PM (GMT -7)   
I'm on Humira and I was told that the starter pack would be $5000 and two pen package would cost me $1600. This was ridiculous so I got Patient Assistance from Abbott for a whole year! We estimated the yr cost for Humira would be about 20-something thousand.
If you can get assistance, I would look into it, Abbott has been fabulous.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)

Regular Member

Date Joined Apr 2005
Total Posts : 103
   Posted 6/13/2008 11:46 AM (GMT -7)   
Just to clarify, I'm not paying the difference... it looks like the 2k is all the insurance pays and I pay my co-pay and that's it. go figure.

map lady
Regular Member

Date Joined Feb 2008
Total Posts : 154
   Posted 6/13/2008 1:15 PM (GMT -7)   
I think that's something where they have worked out a discount with the provider...provider charges a price that is 300% profit on an item or procedure, and agrees to only charge the insurance a price that is 30% profit instead.  This is what they do with hospital stuff, so I'm pretty sure that's how it also works with doctor visits and tests and other treatments when you're not at the hospital too.

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/12/2008 7:40 PM (GMT -7)   
Guys, your discussion is great. I just have a question. Does anybody know how to find the list of companies that have insurance plan which at least partially covers Tysabri? My employer (a large financial institution in Canada) does not cover any of it.

Any comments/advices are much appreciated.


Regular Member

Date Joined Apr 2005
Total Posts : 103
   Posted 10/12/2008 8:43 PM (GMT -7)   
The Tysabri folks might have a list. All I know is that on both Sigma and Aetna they are taking it. And the price was exactly the same on both.


Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 10/13/2008 8:17 AM (GMT -7)   
You all are scaring the crap out of me! They want to start my daughter on remicade after surgery and there is no way we can afford that. I knew it was expensive but I never imagined that costly. We don't have insurance and have to pay for everything ourselves. It is killing us. We are sinking fast and are headed into loosing everything. We make to much money for any kind of assistance but not enough to be able to afford all these medical costs.
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 10/13/2008 8:47 AM (GMT -7)   
Just a note... Since I typed my earlier response above, I realized that the $7481 was for 2 infusions! And, insurance (BCBS) is covering after I've met deductable and out-of-pocket.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 STOPPED Tysabri 10/3/08,
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.
--single mom to 11-yr-old girl

Regular Member

Date Joined Sep 2008
Total Posts : 97
   Posted 10/13/2008 10:15 AM (GMT -7)   

You may want to research low dose naltrexone before starting remicade. I've been looking into it because I've been having some reactions to the remicade and ldn has very promising results. I does the opposite of remicade and actually boosts the immune system. They are using it "off label" to treat tons of different autoimmune disorders as well as cancers. I'm hoping to try this if I have to stop the remicade, it's about 15-20.00 a month.
There's a lot of info at


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