Cost of IVIG

    • Anonymous
      April 2, 2007 at 9:18 am

      i’m trying to get an idea as to what the cost of IVIG per gram is.The hospital keeps giving me the run-a-round after i questioned the bill for my last two treatments.I’ve had five treatments in the past 14 months and the first three amounted to about 32K per or $152.00 per gram.The last two were for 96K per or $457.00 per gram.Quite a jump!Medicare has paid the bills,however i think the jump in cost per gram is crazy.Wondering if anyone else is experiencing this dramatic jump in cost?

    • Anonymous
      April 2, 2007 at 9:36 am


      Prices for IVIg are HORRIFIC, and it seems that everyone is billed different amounts depending on the hospital or provider. I am also wondering if the cost has gone up because of the shortage that there has been in the past. I dont know myself, but im wondering if there is some state or national organization that is able to give a ball park figure on how much medications or treatments cost.

    • Anonymous
      April 2, 2007 at 10:45 am

      Refer to the article just posted by jfitzen… It says, and I’m quoting… [QUOTE]The biological product, at about $100 per gram and up to $10,000 per treatment course, is among the most expensive therapeutic substances in the medical marketplace.[/QUOTE] and then later down at the end of the article… [QUOTE]In a written response to questions, Medicare spokeswoman Ellen B. Griffith said the former reimbursement rate for IVIG was based on an average wholesale price self-reported by its “manufacturers (at grossly inflated prices.” The new rates for most prescription drugs, she said, are based on 106 percent of the manufacturers’ average sales price.[/QUOTE] No wonder it is expensive…there “oughta be a law…….”

      Here is the URL again for the site [HTML][/HTML]


    • Anonymous
      April 2, 2007 at 10:54 am

      My first IVIG treatments in 2005 cost $7500 a day which was a ripoff from the clinic I was going to but my insurance paid that. My insurance paid $27,000 for 250grams in an outpatient setting and that was late 2005. In early 2006 my insurance paid the same for 150 grams in a hospital.
      Tomorrow I start IVIG again and Im not sure of the total but I will owe $1200 (my yearly maximum outofpocket) just for that session alone which means they are charging more than $12,000 for 125 grams.

      thank King George for the total lack of regulation on this hording of IVIG

      Hi Ali 🙂

    • Anonymous
      April 2, 2007 at 3:49 pm

      I noticed a crazy increase too. My first treatment of 160 grams was about $25,000 billed to my insurance in November. In December my treatment of 140 grams was billed (different hospital) to insurance for $82,000. In Jan and Feb, yet another hospital billed about $42,000 for each of those treatments of 170 grams each.
      I don’t know where the hospital in December came off billing $82,000.

    • Anonymous
      April 2, 2007 at 6:22 pm

      Here is a price comparison, per gram, since I started taking a look at this issue. The prices from the “middleman” distributor have gone up in the past few years, but not as much as some would like you to believe. I was able to confirm these prices are inline w/ our local hospital costs, yet 36 grams are still billed in excess of 13,000 (~360 per gram).

      Here’s a link – click on the current newsletter for a listing of prices, or for comparison, there are archived links that go back several years. Also, in the bottom right corner of the newsletter, the current CMS reimbursement rates are posted (average wholesale cost). It it true that this does’nt cover the actual cost. The hospital can bill all they want, but (I am guessing) they rarely get all of it.

      Aimee, I agree . . . . . . “there oughta be a law” . . . . or at least some standardized deviation.



      5/05 3/07

      Flebogamma 57.00 68.90

      Gammagard SD 53.00 68.30

      Gamunex 57.00 69.92

      Octagam 58.70 68.90

    • April 3, 2007 at 7:47 am

      My Jan. bill was Gammagard 5 gm $29,233.80 which almost doubled in the last 8 months. We never had a problem getting it here before but all of a sudden they’ve had to postpone a few treatments the infusion nurse was telling me. Luckily the hospital only charges me 25% of the 20% after medicare. Going in every 6 weeks adds up. With having the Lewis-Sumner variant they cover it because steriods just don’t work. It’s a crime to be able to charge that much.

    • Anonymous
      April 9, 2007 at 10:04 am

      I started taking IVIG treatments last August. They are billing $127,000 per treatment. The CCU nurse’s fee is $9,000. All in all, it’s $136,000 per treatment and that won’t even cure me. Just get me comfortable with a little more energy.

    • Anonymous
      April 10, 2007 at 8:20 pm

      In 1995, when I first received IVIG, my insurance company was billed by the hospital $1300 per infusion. What everyone is saying that their insurance companies are being billed makes me feel that the hospitals are taking the insurance companies to the cleaners. I realize that it takes a great deal of donors to make one infusion, but these charges are horrific. I was on a website called FFF Enterprises. They are supposedly one of the largest suppliers of IVIG. They had listed the wholesale prices which varied from $51.00 per gram for Carrimune to just over $68.00 per gram for Gamunex.


    • Anonymous
      April 24, 2007 at 1:04 am

      I have IVIG treatments every 30 days and now I am waiting on my treatment. There seems to be a shortage. That is what i am told by my neuro’s office.
      Can i find out on-line or by calling someone myself? Any suggestions? I hate just waiting by the phone. There is not a problem with the costs for me or anything. I still go in-patient for 5 days/8hours IV.
      Anyone else regarding the shortage?

    • Anonymous
      April 24, 2007 at 3:14 pm

      I’m not sure what’s going on. I was scheduled for an IVIg treatment tomorrow [Thursdays] at the Eglin AFB Hospital. I got a call last Friday that said they could not get any. There was no explanation, they just said it was not available and they were sure when it would be :confused:

    • Anonymous
      April 25, 2007 at 11:40 am

      My last infusion was 3/15 and I dont have the billing yet. The 1/2/07 was billed at $1,931.27 The nurses in the infustion center said they have no shortage, get their monthly supply just fine. This is a small town in SD.

    • Anonymous
      April 25, 2007 at 1:04 pm

      I get my infusions at home and am being billed about $9000 for 35g of Flebogamma. Of course, the insurance has an in-network “discount” and only pays about half that. My first treatment last July was in a hospital where 3 treatments cost about $10,000. Go figure. No shortage that I know of here, either.

    • Anonymous
      April 25, 2007 at 8:45 pm

      When Frank had his treatments the insurance paid $25,000 to $30,000 per week, that’s because the hospital billed in-network prices, our insurance was Aetna. I can’t imagine what the hospital would have charged had they not been an in-network facility.

      The prices should be regulated and not inflated, this is a crime.

    • Anonymous
      April 25, 2007 at 11:01 pm

      This scares me.They are supposed to deliver my IVIG tomorrow for my Mon infusion.I get infusions every two weeks for three days.I’m using Gammaguard .

    • Anonymous
      April 25, 2007 at 11:06 pm

      My ivig treatments were paid for as well and when I recieved the statement I almost fell out of my chair for a 4 day course it cost almost 40k dollars. And recently in my local newspaper it ran an artical about the ivig treatment and the costs and the prices vary from facility to facility. And now most insurance don’t want to pay for it due to increasing prices. I wonder what they expect of those who don’t have insurance or their insurance refuses to cover it. These drug companies who are tring to profit from illness should be asshamed of themselves.

    • Anonymous
      April 26, 2007 at 11:34 am

      I had posted on our old forums 2 1/2 years ago about Frank’s neuro having gone to NYU Hospital in Manhatten, N.Y. for a medical conference. The Drs were told that insurance companies were starting to deny IVIG to patients because of the cost. Now I see that happening more and more to all of you.
      I do believe the future of having IVIG will really deminish for alot of people.

      I have said this over and over again, it’s always about the money 😡 . It’s so costly for IVIG and insurance companies just don’t want to pay the high costs. That is why some regulations need to be in place about how hospitals and drug manufacturers charge the insurance companies. Yes, profits need to be made but not at the expense of a patient’s health.

      A person should never be denied any medication or treatment.

    • April 26, 2007 at 1:32 pm

      Ironically, I just recvd. Kevin’s bill for his 3/12 3/13 3/14 stay. For three days worth of ivig, the bill was 49,986 $. The total bill was $56,546. The discounted insurance amount that was actually payed was $16,666. What a difference. Today I was setting up Kevin’s at home infusion set for tommorrow, and I was speaking to the pharmacist regarding availability and price. She said obviously the generic companies charge less, but that the larger companies charge more because they know they can get it. IVIG is used for many other purposes’ other than extreme medical need, such as fertility issues, people traveling out of the country and they want to boost their system and many other reasons. She said that insurance obviously does not pay for these people and that these people actually do and can afford to, pay for it themselves. I imagine that Gamma Guard knows what they will get from the insurance and what they can get away with charging the independantly wealthy. I also spoke with Gamma Guard directly when having to answer questions about a reaction Kevin had and I asked about the high cost. Apparently, Gamma Guard will not let anyone go without the ivig if needed and they will provide the ivig if the financial criteria is met. How easy is it to make that claim come to fruition I don’t know, I just thought I would pass that on. Dawn Kevie’s mom:o

    • Anonymous
      April 26, 2007 at 2:31 pm

      Hi Dawn,

      That would be wonderful if Gamma Guard did that for those with no insurance or whose insurance will not pay for it.

      I hope they keep their word on that one.

    • April 26, 2007 at 4:58 pm

      Hi Brandy,
      Regarding your comment on those whos’ insurance will not pay, the pharmacist from home health care told me that the reason some insurance companies do not pay is because ivig is not a recognized method of treatment for gbs/cidp. She suggested that a case manager is usually able to work with the insurance to get the ivig covered. Again, I wonder how easy it would actually be to fight the insurance companies but it is worth trying! I do not understand why things are always so difficult for those in need! Had this happened to me and not my son, I don’t know that I would have the energy to argue w/insurance companies! I can only imagine how hard it is for people who are ill to advocate for themselves. Dawn 🙁

    • April 26, 2007 at 10:20 pm

      My ivig treatment back in ’02 when I started was around $5600. My most recent bill showed it coming in at over $10,000. Thank goodness our insurance has to cover it.

      I did just run into a first…this was the first time I have ever had to wait for my treatment due to a shortage. It arrived about a week later but I must admit I was beginning to worry.

    • Anonymous
      April 27, 2007 at 12:16 am

      Hi Dawn,

      The insurance companies can make all the claims they want that IVIG is not a recognized treatment for GBS/CIDP, but in reality it’s the money. They do not like spending that kind of money for a week’s treatment, then multiply that by years of treatments and then they side step the issue by saying it is not a recognized treatment. They are so shrewd.

      As a medical office manager and medical billing manager I can tell you they deny claims all the time even when it is the correct recognized treatment, they are trying to save the insurance company money by denying anyone’s claim. I have seen it way to often in my 20 years in the medical field. Also some people have caps on their insurance and if you hit a certain amount of money, they stop paying. Also another thing to remember, with insurance companies you are dealing with claim adjusters who know sh_t about medical
      diagnosises and treatments,and they are actually told to reject certain claims.

      When Frank was first diagnosed and in the hospital I had to call Aetna that he was admitted in an emergency or they wouldn’t pay the bill. Then I had this stupid idiot adjuster who couldn’t understand a thing I was saying. She kept saying he had Epstein Barr and I’d correct her only to have her tell me I was wrong and she never heard of Guillain-Barre. Finally I told her to put her supervisor on the phone that I would not discuss this any more with her because she was a stupid idiot. I have a friend who used to be an adjuster and she told me it’s the norm to deny claims all the time especially when it’s an illness they know nothing about.

      So just think if someone has a million dollar Insurance cap, that money can be eaten up by IVIG treatments in a short time.

      I will say this until my last breath, it’s the money always the money.:mad:

    • Anonymous
      April 27, 2007 at 2:12 am

      In May 2005 I was geting 40 grams a day-cost $ 4,000.00. My Medicare knocked it down to half that price.
      Since June 2006 I’m getting 50 grams an infusion at $ 8,500.00 and my Blue Cross is taking the hit. I have it coming through my Pharmacy Benefits as of January 2007 and supposively that doesn’t have a lifetime cost cap.
      I’ve called the drug supplier and he knows way more about coverage than my insurance companies. Just started home health for IVIG and it’s coming from same supplier as I used in the doctor’s clinic so it should cost the same.
      Without IVIG the neuro said I’d be back in a wheelchair in a few weeks and the nerve pain can NOT be controlled. I had to much nerve damage before correctly diagnosed and treated.My life depends on it.
      My monthly bill for 300 grams: $ 54,000.00 for IVIG

    • Anonymous
      April 27, 2007 at 3:13 pm

      When I got IV-IG the 2nd time, as an outpatient, it was $10,000 per treatment, for a total of $50,000. that was in 1999. I’ve just started getting it again and I have no idea what it’s going to cost, but I do know that Oxford was trying to weasel out of covering it.

      I’m getting it done at home this time, and if there is a next time I’m going to insist on going to the hospital and doing it there. The nurse kept changing the appointments and basically insisted I do it when it was convenient for her, even though she asked me when I wanted to schedule the appointments. And no one seemed to know how many treatments I was getting, or how far apart they should be spaced. It’s been a mess.

      Let’s not even talk about how I almost passed out and the nurse didn’t do anything.

    • Anonymous
      April 29, 2007 at 3:36 am

      That’s the main reason my neuro insisted his staff nurses do my home health IVIG. He wanted to know exactly how I was doing and his nurses are well trained. I can’t get the Ativan IV like at the clinic but half the time they wouldn’t give it to me as I was driving. I passed out at the wheel anyway from sheer exhaustion so I can sleep in my bed now.
      The nurse should be reported and YOU are paying her.So sorry about her not paying you the attention you need.
      My neuro, his head infusion nurse and the IVIG supply company work togethter to coordinate and I get my schedule in advance for the upcoming week. I don’t get out much so anyday is okay and one comes at 6:00 AM. Yucky””.I used to be at the clinic at 7:00 AM so that’s okay. My cat likes me here and the nurses think he’s super. He tries to chew on the IV tubing.

    • Anonymous
      April 30, 2007 at 8:15 pm

      We just got the bill for my IVIg infusion last month, and it was just under $25,000. I was floored! Luckily my insurance has covered it at 100%. Some of the higher costs I’ve seen here are simply stunning.

      How can IVIg not be recognized as a legitimate treatment for GBS/CIPD when it’s so obvious that it helps so many people with these conditions? For me, within 48 hours of starting the IVIg treatments, my GBS stopped getting worse, and I suddenly began to stabilize. I will forever believe that it was this treatment that kept me off the vent, as my lung capacity was practically nil beforehand.

      While $25,000 might seem like an outrageous cost to me, compared to the potential cost of an extended hospital stay in ICU on life support without the IVIg, I think most insurance companies should assume the cost of the IVIg in a heartbeat. But unfortunately, some insurance companies fail to see the big picture and punish people who simply seek to be well. I am extremely grateful that the insurance battle is one I have not personally had to fight in my own GBS experience.

    • Anonymous
      April 30, 2007 at 8:43 pm

      In a report from the Department of Health and Human Services, Office of The Inspector General, it stated that Medicare Part B and its beneficiaries paid approximately $74 million for IVIG administered in physicians offices and patient homes in 2006. In addition Medicare paid an additional $130 million for IVIG in hospital outpatient settings from January thru October 2006. This report is about 30 pages long and covers payment and availability. Real interesting.


    • Anonymous
      May 1, 2007 at 11:10 am

      IVIG is recognized as a treatment for CIDP and often is used as a first-line treatment since it is so effective in patients that respond to it. However, it is considered and “off label” treatment because it is not specifically approved by the FDA for treatment of CIDP. That does not mean that the insurance companies are off the hook for payment. Many drugs are recognized by the medical commuity for off label use because it is not feasible to run the studies necessary for FDA approval. In the case of CIDP, there simply not enough patients!