Insurance denied Infliximab - $28k bill - Behçet's UK

Behçet's UK

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Insurance denied Infliximab - $28k bill


I live in the US - I have Aetna for health insurance. We specifically chose the highest plan my husbands employer offers, paying $800 a month (company matches half, so $1600 a month), for lower co-pays, lower deductibles, lower co-insurance.

I have an autoimmune disease, called Behcet’s. I have used my insurance A LOT. Multiple surgeries, hospital stays.

I recently had to stop taking Humira and start taking Remicade. Remicade is IV infusion, only.

When I went for my first infusion, I found out my hemoglobin was 5, so they had to start IV iron before I could start Remicade. Today was my 5th iron, and I’ve had 2 Remicade, my 3rd being due next week.

Now, due to co-insurance, I was told I would have to pay $266 per visit until I reached my $3000 for the year, and days I have both iron AND Remicaide, I double the payments.

Okay, fine. I can deal with that.

Then, I get an email today from Aetna. They denied my treatments.


Not to mention the second one I had that they haven't submitted yet!

I am so frustrated. I FINALLY find a medication that works, and then this. I am at the point of just giving up, crawling in a hole somewhere to die.

8 Replies

I'm so sorry. That's left you in a very difficult position. Please copy your post on to the Yahoo behcet-support website. I'm sure some folks here or there who deal with private or company insurance will reply with valuable insight (and empathy).

I wish I could help, but I receive all of my medical care and medications for free through the military and VA, plus SSDI through Medicare based on complete disability ratings.

Kayhold in reply to amietamant

Thanks! I am going to call the Dr in the morning and see what Aetna told them, and then go from there.

Hi Kay

I live in Australia. I was led to believe that Infliximab is $4000 a dose (not $28,000) - I would be questioning a few things there.

Personally I had six doses but it didn't do me a lot of good (in my case it was covered by the public health system).


Kayhold in reply to lesleyg

Here is a link that shows the picture better, the one I included is unviewable.

They didn't get me so much on the actual medication - the extras were all the things like administering it, blood work, etc.

They charged short of 19k for the actual medication, and then not shown, is another $2k in bloodwork.

Oh Kayhold Hun,

I am afraid that I will be of little help to you except to say that I am so sorry you are having this extra stress on top of all the awful things you are going through. Mwah ! :)

In the UK we have the grand majority of our medical bills paid for through the national insurance scheme which is a basic deduction from gross pay that everyone above a certain earnings level pays through their payroll administration automatically. This is no way relates in anyway to the actual cost of the services and drugs involved so I am afraid most of us here in the UK have very little knowledge of how much these things actually cost.

Although many of us are heard to complain about the services we get at times and especially the waiting times for operations, we really are so very lucky to have such a comprehensive health care system to fall back on. It has it's faults but it is still there and that counts a lot towards reassuring most of us that help is usually just at the end of a telephone line.

I really hope you manage to get things sorted out and know that we still feel so much for you as a member of our special little BD family and one which you are more than welcome to come to and talk about your condition at any time hun. Hugs and sympathy we can give in bucket loads ! :)

Kindest regards and special big hugs hun xx

Hi Kayhold,

I am like Lesley form Australia. Here your Dr presents your case to the drug committee and they decide whether it is worth trying and then pick up the full cost.

We are very lucky!

I do hope you get it sorted out.

Best wishes,


Definitely get the itemized bill from your Docs; it may be that the insurance is not paying due to their incredibly high charges. Also, the people at the doctors office are used to presenting patients' cases to the insurance company in a way that explains why a medication for RA is necessary for BD. They should be ready, willing, and able to fix this problem so that you can receive treatment. Also, check out Remicade's website as they offer help meeting the costs of treatment.

I Take Remicade every 6 weeks at 600.00 a pop after meeting the 3000.00 deductible. The actual bill to the insurance company is about 4000.00 each time.

Have you tried calling Aetna directly?

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