IVIG COST...Please share your experience

[Jaal]

Hi

 

It seems that IVIG will cost around $12,000 for my DS 7 (48 lbs)...this is estimate for Dr. K.

 

Do all Doctors charge this much? I didn't think it cost that much. (Blue Cross will not cover).

 

Can people who have had IVIG performed please share how much it cost them and where they had it performed.

 

 

Thanks so much in advance!

[momoftwinsplus1]

It seems like it might have gone up a bit. It is the drug that is so expensive. We paid almost $10,000 a year ago with Dr. K. Would I do it over again? YES!

[mpsloan]

We were just told it would be $100.oo per pound basically with Dr. L. office plus about $900 office fee for two days of treatment.

I too have bcbs insur. I have not started that process yet as we are awaiting other tests to rule out lyme and other co-infections. That amount is per each IVIG treatment, I don't know how many he will need. New at this forum, but have found it very, very helpful.

[nicklemama]

Pm'd you.

[stacyH]

My son just had IVIG last week with Dr. L. He is 109lbs and the cost was $10,850.

Good luck

[T_Anna]

Price I was given tonight, $5177 per 50 grams. We will need two.

T.Anna

[PowPow]

Where were you given that price t.anna?

[T_Anna]

Walgreens Infusion company, subsidiary of Walgreens (I believe they're based out of Chicago IL).

 

Supposedly we are doing it tomorrow. I will hear tomorrow morning. Just in case I had doubts whether this is necessary...DS has been stuck in the bathroom since 7:15 (it's 10:48 right now) : /

 

T.Anna

DS14

[ptcgirl]

We were thankfully covered by insurance, but I noticed on the insurance statement the cost was $13k per day (DD has two days per infusion). However the amount paid to the provider is much less. I think about $5k per day. Have you asked for a "cash rate" or the same rate that the insurance companies pay? I know that a lot of drs will do this for other things (not sure about IVIG, but it is worth asking!). Good luck. My DD has had 5 IVIGs and they are very helpful. Make sure that you have treated all underlying infections (Lyme, co-infections, mycoplasma, yeast, etc) before starting IVIG.

[beeskneesmommy]

We had IVig with Dr. Latimer in Sept. 2012. She ordered thru a pharmacy that traveled to her office to administer over a period of 2 days. We were sick of our insurance jerking us around and paid OOP. It was a bargain, as far as we were concerned. All said and done for our 43.5 lb son including Dr. latimer's fee for oversight was less than 5K. Also be advised that if your insurance denies the actual cost of the IVig, you can still usually recover reimbursement at least in part for the Dr.'s fee. We would have done it for twice the price and we have absolutely no regrets except that we didn't do it a year sooner!

[Themama]

Our bill for 4 days of IVIG from the infusion center at the hospital near us in Calif. was $72,000! Before I had insurance approval I called for cash quote and was told $8,000 a day so $32,000 cash. My son had 40 grams of Privigen a day plus Benadryl and a steroid.

[mdmom]

Just got the EOB from insurance for my DS15's first IVIG. It was administered at home over 2 days with a nurse here for 6 hours each day. Total cost was $8916.00 for 100g total of Gammaked.

[michelew923]

Hello. This is my first post to the board. My 13 year old son had his first IVIG treatment in January, 2013 with Dr. Bouboulis in CT. Aetna did not give us preapproval so we paid in full, and has now denied the procedure entirely. We are going to try to appeal or have an outside review of our case, as Dr. B thinks he will need treatment every 6 - 8 weeks for approx one year... ( about 6 or 7 treatments )

We paid 10,300.00 for 2 days of IVIG and he goes in on Monday for round 2! We are expecting to pay the 10,300 again based on his weight of approximately 130 pounds. They were wonderful there and made the experience very smooth. He had a week or so of an exacerbation of his symptoms after the treatment ( which they told us to expect after treatment 1 ) and then had approx. 3- 3 1/2 weeks of a great decline in symptoms and then exacerbated again! He really needed another treatment two weeks ago....but they couldn't fit him in!

 

Has anyone out there had Aetna actually reimburse for the IVIG? Has anyone had an insurance company pay for the treatment and under what codes? We are willing to try to switch insurance companies if there is one that will cover this much needed treatment! Thanks!

[LNN]

I know that IVIG helps many and I am not posting to be anti-IVIG. If you are in a position to do it and feel it's helpful, by all means go forward. I only chime in for those who are new and might feel pressure that they "have to" do IVIG in order to be "good parents" or to give their child every chance at recovery, yet may end up going seriously into debt to do it. I personally don't feel IVIG is your only treatment option. You can get often get your child back in other ways. Not everyone will agree with me, some have experienced remarkable recovery with it. Others, including my son, were not helped.

 

So I only post this for those who have this internal struggle going on - do we get a second mortgage? Do we raid the college fund or 401K? $10K for a treatment that may give temporary relief but isn't a cure is a lot of money! As I said, if you can swing it and your gut tells you it's the way to go, do it. But please don't feel like you have no alternatives or "need" to do this for any chance of recovery. Many parents are able to achieve remission, over time, with antibiotics. Some with combo abx. Some with a combo of abx, supplements and ERP therapy. There is no single right answer, no universal path. And absolutely make sure you don't have a chronic infection going on or it's money down the drain. If you haven't ruled out lyme with a specialty lab (quest and labcorp tests don't count IMO), if you haven't tested for mycoplasma, run recent strep titers, done a viral panel for HHV6, coxsackies, EBV...then do these tests first.

 

Again, not trying to bash the procedure or talk anyone out of something they firmly believe in. I only say this for anyone who feels pressure but may not have the financial resources. IVIG is a tool, not a cure. It can help some kids. But there are other options if cost creates a serious dilemma.