IVIG Out of Pocket – Please Help

    • Anonymous
      April 28, 2010 at 5:34 pm

      New to the forum but great that there are so many caring individuals out there.

      Very long story but I will likely need to start IVIG without any insurance (do not fit exact clinical criteria but need to do something to help symptoms). My doctor and I will of course work as hard as we can to get it covered and I appreciate all the other posts relating to strategies on how to better your chances.

      However, I am interested if anyone knows of a pharmacy or vendor that has reasonable rates? Can anyone share what they are paying if out of pocket? I understand this is a huge investment (one that I can’t do indefinitely but can afford a trial to see if improvement) but there is nothing worth more than your health. Any names or thoughts for ways to get it cheaply (through legitimate channels of course 🙂 ) would be appreciated.

      Thanks in advance.

    • Anonymous
      April 28, 2010 at 8:25 pm

      Ouch. I am feeling the pocket pain. I have been told that it takes about three sets of treatment to start seeing improvement. My sets were two per month on consecutive days at a cost of 10-11K per set. I did not have any improvement, but since it was covered by insurance, it stuck it out for the entire 6 months.

      Is there any chance that it can be covered by your insurance? IVig is now considered pretty standard treatment It might be worth as fight with your insurance company. I am doing that now in an effort to get Bc/BS to cover cellcept.

      Or consider prednisone. It is also effective and a heck of a lot cheaper…though you can’t stay on it forever.

      Best of luck to you.

    • April 28, 2010 at 9:21 pm

      The cost is kind of like lobster, market price. You can call each of the vendors and ask for the per gram price. A few years ago I called around and it ranged from 74-112 dollars a gram. If you are paying out of pocket, a 140 gram infusion could run you about 35K $ that is including nursing, pump supplies etc. The thing is, that is a discounted insurance amount. If you do not have insurance it could be twice that or more.

      Honestly, that seems impossible to pay monthly even at the discounted amount. Maybe to keep you going until whatever is going to happen to health care happens, you can ask for prednisone, it is literally pennies on the dollar. As well, there are drugs like imuron, cell cept (some questions) etc. that are way cheaper than ivig as well. Will check back later.

    • Anonymous
      April 28, 2010 at 10:50 pm

      Do you get IG Living magazine? There is a lady who is kind of the unofficial editor and she has lots of ideas. Her name is Kris Mcfalls and she is wonderful and a wealth of info. Please contact her and ask her for ideas. Best Wishes

    • April 28, 2010 at 11:12 pm

      Some compamies have programs where you can get assistance, but you have to have lost your insurance and previously had ivig. Do you not have insurance at all, or are they just denying you. If it is a matter of being denied, it is relatively easy to get ivig with a carefully constructed letter from your doc. I really can’t think of any other answers. People on medicaid and sometimes medicare can’t even get it unless it is in a hospital with non for profit rating and they have to take a certain amount of people. Home health does not want to take nor do they have to take medicaid/care because they loose money. Perhaps you could go to the er with no insurance and they have to admit you and administer the ivig? Worth a try.

    • Anonymous
      April 29, 2010 at 12:37 pm

      Thanks to all for their thoughts so far.

      The main issue is while I have some insurance – I do not fall with in the clinical diagnostic criteria for CIDP and have symptoms that are in addition to and not consistent with it. My Dr. feels IVIG is the best strategy at this point given everything else we have done. Prednisone was tried.

      I do not get IG Living but found the website – I will follow up with Kris if I can get in touch with her.

      Have not had IVIG before so those programs are unlikely.

      Thanks again to everyone – I appreciate any additional thoughts.

    • Anonymous
      May 1, 2010 at 11:39 am

      My heart goes out to U! Have been lower than where U R now. Physical, financial, emotional & mental crash. No ins. for 5 yrs. I felt like a medical & social outcast. Going to the E.R. may only get U turned away, but try, U won’t know if you don’t try! Hope is eternal! I will pray for U!

    • Anonymous
      May 1, 2010 at 6:57 pm

      I had 5 IVIGs and the cost was $13,000 a bag.I thought someone wrote they contacted the company that made it and they got it free.I would go to the SS as if you are not old enough you definatley can say you are handicap. I have you in my prayers and thoughts (Lakoda)[/SIZE]DON,T GIVE UP

    • Anonymous
      May 2, 2010 at 3:52 pm

      I like the comment that hope is eternal. If we do not have hope, we don’t have anything.

    • Anonymous
      May 4, 2010 at 6:00 pm

      For me, the doctor was able to get insurance approval to try IVIG and if I responded to it, then it confirmed the diagnosis. I have now been on it, paid by insurance, for two years. In other words the treatment was part of the diagnosis. I am not sure if this is the norm.
      Donna M

    • Anonymous
      May 4, 2010 at 11:20 pm

      Try “Partnership for Prescription Assistance” if they cannot help they may refer you elsewhere. I am waiting on someone to call me back on another name for assistance. What state are you in, assuming you are in the U.S.?

    • Anonymous
      May 10, 2010 at 11:38 am

      Thanks again to all. I appreciate the thoughts on strategies as well as the support. my best to all.

      BTW – I am in VA.

    • Anonymous
      May 23, 2010 at 6:32 pm

      Hey NewGuy! How’s it going in the VA? R U getting your IVIG there? Please update us when U can. Know that we “your GBS/CIDP” family R here for U & U R in our prayers & thoughts.
      Peace, comfort,& healing to U, smitty

    • Anonymous
      May 24, 2010 at 12:10 am

      a magazine called IGLiving… it’s on the web. And they can plug you into resources that mite be able to help-or at least sort out what help is available. The site is user-friendly, the folks are great and they can and do help others.

    • Anonymous
      May 24, 2010 at 8:36 am


      I followed up on homeagain’s recommendation. Turns out “IG Living is published by FFF Enterprises.”

      Looking at FFF Enterprises yields “FFF Enterprises continues to set the standard for patient safety, access and availability to the plasma products, biopharmaceuticals and vaccines that improve the quality of life for the patients who receive them.”

      Better yet, the FFF site yields a page called ‘Open Market Pricing’-


      Intravenous Immune Globulin (IVIG)
      Product Size Price
      Carimune NF All Sizes $64.70/gm
      Cytogam All Sizes $908.00/vi
      Flebogamma All Sizes $74.60/gm
      Gammagard Liquid All Sizes $81.80/gm
      Gammagard S/D 0.5gm $152.00/gm
      Gammagard S/D All Sizes $81.80/gm
      Gamunex All Sizes $74.60/gm
      Octagam All Sizes $72.35/gm
      Privigen All Sizes $73.70/gm
      Thymoglobulin 10 ml $564.00/vi

      These two sites look like a great resource. Thank you homeagain.

    • Anonymous
      May 26, 2010 at 2:02 pm

      This is great information – thank you all so much. I am trying to get coverage under immunodeficiency but waiting for vaccine challenge results. But these will help if have to try it myself. Its so very expensive but literally you can’t put a price on your life so we’ll find away.

      Thanks again to all!

    • Anonymous
      May 27, 2010 at 3:07 pm

      quote: “Insurance Gaps

      The GARDian program ([url]www.mygardian.com[/url]) may also help patients who experience insurance gaps and those who have no insurance. This assistance is available to qualified IVIG patients on any therapy, including newly diagnosed patients and those who are not currently on GAMMAGARD therapy. The program provides GAMMAGARD therapy at no cost to those who meet the program’s requirements.*
      *Financial and residency requirements may apply. Please contact the GARDian program, 1-877-655-GARD (4273) for additional details.”