CIDP and Medicare

    • May 26, 2017 at 8:04 pm

      Does anyone know if Medicare covers for ivig with CIDP diagnosis? Have asked Medicare and can’t get an answer. I live in michigan. Will start on Medicare in July. Also, will they still let you get infusions at home? I am so stressed trying to find out. Do I need Medigap.

    • May 26, 2017 at 8:08 pm

      That’s the $64,000 question. I am facing the same problem.

    • May 26, 2017 at 10:36 pm

      I’ve been on Medicare PPO’s and Supplement N’s. My diagnosis includes GBS/CIDP/MFS. I have always gotten IVIg (at infusion center and at home), Plasma Exchange, and now Rituximab. I’m in California, but I don’t think that matters. I have never been on an HMO and maybe that makes a difference?

      Part B is how these are covered for me. If you attempt to gain approval for these kinds of treatments under Part D, you will get denied.

      Here is some info for you:

    • May 26, 2017 at 11:01 pm

      Some additional Medicare details. My supplement N is with Blueshield and here are their IVIg requirements:

      Medical coding for a coverage request can get you denied or thrown into a holding pattern over a request for medical necessity. Here is the coding for IVIg being given to CIDP patients. It includes references to the exact criteria that needs to be specified for coverage and to avoid denials. Most doctors get the coding wrong. You need to help your doctors get it right. Sometimes that might require additional testing:

      CPT Jcode – J0850, J1459, J1561, J1568, J2788 – Intravenous Immune Globulin (IVIG)

      • June 7, 2017 at 12:13 am

        Jim, the article on medicare and coding is interesting. If your doctor does not use the correct coding it will be denied. I’ve also learned through dealing with insurance rejections that the doctor has to use the correct wording. Certain “words” have to be used. It’s all a big game to them to see how many can get rejected. Very sad for patients.

    • May 27, 2017 at 4:55 pm

      I was told (by Medicare) that Medicare does not cover home infusions unless the patient is bedridden. I pay for in-home infusions with a nurse out of pocket.

      My Part D drug insurance cover my Gammunex. My co-pay in the beginning was $4,000 for one month. I quickly went into catastropic coverage, so my monthly co-pay is about $1,000 for the rest of the year.


    • May 27, 2017 at 5:39 pm

      BKWRM, yes, you definitely need some kind of medigap insurance as well as drug coverage (Medicare Part D) or you will go bankrupt trying to pay your medical bills. IVIG fluids are a drug. They’re covered under Part D drug coverage.


      • June 7, 2017 at 12:20 am

        Sandy, what I’m finding out is that if you get IVIG for CIDP and get it as an outpatient at a hospital or clinic, not at home,they bill Medicare part A. Then your supplemental covers the part Medicare does not cover. You should check with your doctor about having it done as an outpatient. I’m in Michigan.

    • May 27, 2017 at 7:47 pm

      Part D coverage for treatments such as IVIg is not a good choice due to expense. Part B provides the lowest cost coverage for these treatments, and one does not need a Medigap/Supplement plan (although they will pay in addition to original Medicare coverage).

      Michigan offers various Medicare plans: Medicare advantage plans, PPO, HMO, and 10 types of Supplement plans. Not all plans are alike from a coverage and cost standpoint and one must do their homework to pick the best for their situation. For my situation in California, I went with orig Medicare + supplement N + a separate Part D. This provided the optimum coverage for me at the lowest annual cost.

      If you were insured by Blue Cross/Blue Shield in North Carolina, here is the 2017 explanation of coverage for IVIg and SCIg (in home or at infusion centers):

      Virtually all Medicare insurers have coverage policies governing IVIg treatments under Part B. Then it’s a matter of using the correct ICD-10 codes (see my earlier post) to request coverage.

      • June 5, 2017 at 9:57 pm

        Thank you Jim for your info. I am still trying to determine if Medicare covers IVIG for CIDP, even when I called Medicare they could not give me a definite answer. I do have an insurance guy who shops all the companies. He told me that Aetna has the best plan for the money and Priority Health plan G is the best for me for. I am in Michigan. Does anyone know much about Priority Health?

      • June 7, 2017 at 4:00 pm

        For some reason part of my message was cut off. My insurance guy said Aetna is good for my prescriptions and Priority for my health supplemental.

    • May 29, 2017 at 4:06 pm

      I would love to pay less — a LOT less — and I’ve explored the options, but all I get from Medicare is a statement that Part B covers IVIG only for people with primary immune defiency disease (PIDD). The info you posted about the demonstration project was only for people with PIDD. I actually have PIDD, as well as CIDP, but the amount of IVIG used for treating immune deficiency is a fraction of what I need to treat CIDP. I’m going to look into this again, but the insurance arrangement I have now was the best I could find when I started IVIG. I take so many other drugs, some very expensive, that I wouldn’t dare drop my Part D coverage. My drug expenses would go up to about $1,000 a month without it. And my medigap insurance has totally covered the 20% that Part B and Part A didn’t cover for my $50,000 knee surgery and my $80,000 pelvic and spine fracture repairs. I haven’t paid a cent beyond my $48 a month supplemental policy premium each month.

    • May 29, 2017 at 4:21 pm

      Looks like Supplement Plan N requires a lot of out of pocket co-pays. My medigap plan, which costs me $48 a month, is all-inclusive. It pays everything that Medicare does NOT cover. I owe no co-pays and receive no bills, ever. Medicare sends the bill to my insurance and they pay it. They’ve never challenged any charge.


    • jk
      June 3, 2017 at 10:00 am

      Medicare Part B has covered my IVIG since my start date in 2003. At no time have any of my treating facilities billed IVIG has Part D.

      The people to ask about any type of coverage are the people providing the service. Believe you me, if they have any doubt, they will ask you to sign an Advanced Beneficiary Notice (ABN). If they do not ask you to sign an ABN, take your pick- 1, they forgot. 2. They know they’ll get paid.

      Generally speaking, if an ABN is required and Medicare will not cover the service, the first time notice sent to you will say something like this: “Medicare does not cover this service. It looks like you did not know Medicare would not cover this service. You are not responsible for these charges.”

      Don’t try it again, though. Medicare now knows you have been told.

      I believe it is factually incorrect to state you must be bed-ridden to qualify for Medicare home based infusion. Yep, been there, done that to. The term I’m familiar with is ‘homebound.”

      As defined by Medicare: “Normally unable to leave home unassisted. To be homebound means that leaving home takes considerable and taxing effort. A person may leave home for medical treatment or short, infrequent absences for non-medical reasons, such as a trip to the barber or to attend religious service. A need for adult day care doesn’t keep you from getting home health care.”

      However, reporting you do your own shopping will get you punished. Yep, a personal anecdote.

      A short review- “For a patient to be eligible to receive covered home health services under both Part A and
      Part B, the law requires that a physician certify in all cases that the patient is confined to his/her home. For purposes of the statute, an individual shall be considered “confined to the home” (homebound) if the following two criteria are met:
      1. Criterion One: The patient must either: – Because of illness or injury, need the aid of supportive devices such as crutches, canes, wheelchairs, and walkers; the use of special transportation; or the assistance of another person in order to leave their place of residence OR – Have a condition such that leaving his or her home is medically contraindicated. If the patient meets one of the criterion one conditions, then the patient must ALSO meet two additional requirements defined in criterion two below.
      2. Criterion Two:- There must exist a normal inability to leave home; AND – Leaving home must require a considerable and taxing effort.

      Read all about it here:

      Again, this is not your main area of focus. This is the providers problem to document, if they want paid.

    • jk
      June 3, 2017 at 10:08 am

      Do you need Medigap? I would not be without it. Regular Medicare covers about 80% of that which it covers and approves. And, that’s not automatically everything a ‘normal’ private insurer might cover.

      In rough, round numbers, 80% of a $5-10,000 treatment leaves a lot left over. Now terms are confusing.

      What is Medigap? Let Medicare define it: “A Medigap policy is different from a Medicare Advantage Plan. Those plans are ways to get Medicare benefits, while a Medigap policy only supplements your Original Medicare benefits.”

      So, make sure you compare apples to apples and if you are enticed by an ‘Advantage’ Plan please find out if it has annual out of pocket maximums, and what they are.

    • June 5, 2017 at 11:33 pm

      Here is the health insurance plan ratings used by Consumer Reports for MI:

      Plan G is a supplement (Medigap) that covers a little more after original Medicare pays their share. It does not cover Part D drugs, you would need a policy for that if you went with G. They also have a Medicare-Advantage PPO that is rated average. Such a PPO would cover Parts A, B, and D.

    • jk
      June 6, 2017 at 2:59 pm

      An insurance guy works on commission. You work for yourself. einsurance shows this, for example for PriorityMedicare Key (HMO-POS) Out-of-Pocket Maximum $4200 for services you receive from in-network providers.

      Out of pocket max. As stated above, and now by me, using Traditional Medicare and a Supplemental Plan, my out of pocket cost is the standard fee everybody pays for Medicare plus $185 month for the Supplemental Plan which pays my annual Medicre deductible and 100% of all Medicare approved services.

      Let’s round that off, $200 x 12 = 2400 out of pocket and I then pay nothing.

      Repeating, do your own homework. Study the coverages, exceptions, available in-network resources and the annual deductible plus copays. Look closely at the costs for specialists. Neurologists and hematologists and infusion centers are all likely specialists. Is the Infusion Center in-network?

      Tread carefully.

      start here:

      • June 7, 2017 at 4:18 pm

        Thanks JK for the info. I’ve tried to do my own homework, but end up more confused. I’ve spent more time on trying to figure out if Medicare will cover IVIG for CIDP. The real trick is the P in CIDP. There’s a difference if it stands for Polyneuropathy or Polyneuritis. Right now as it stands my infusions will not be covered by Medicare. My neurologist does not work out of a hospital with infusion facilities nor does he have a clinic for it. I have the Polyneuropathy. What state are you in?

    • June 6, 2017 at 7:04 pm

      I just found out from my infusion company that Medicare does not cover IVIG for CIDP. Now what do I do?? I live in Michigan. She did mention that it might cover IVIg if I get it done as an outpatient at a hospital, I’ve been getting it done at home and start on Medicare in July. That makes no sense, it would cost more to do it at a hospital than at home. That’s the government wasting our tax money. If you get it done at a hospital how do you get the medicine??? More questions than answers.

    • jk
      June 6, 2017 at 10:00 pm

      I currently receive IVIG paid for by Medicare at the local Cancer Infusion Center courtesy of the hematologist there who follows my prescribing doctors rx. If you can’t get paid at home, leave home.

    • June 6, 2017 at 11:45 pm

      If your infusion service says you can’t be reimbursed by Medicare, it’s time to find another company, and real fast!

    • jk
      June 7, 2017 at 12:11 pm

      From this website: No One Should Go Without Treatment If you have been denied treatment for IVIG, please let us know


      And from IG Living: “Ultimately, regardless of diagnosis and insurer, your IVIG therapy coverage may come to depend on your persistence, the support of your treating physician and patience. Please contact IG Living if you need assistance:

    • June 8, 2017 at 4:12 pm

      I have found a clinic to do my infusion and have it covered by Medicare. Now I have to get a supplemental insurance. Someone told me that I should check the insurance to make sure they cover IVIG. I thought they covered it. Since I have a clinic that Medicare will cover should I still get a Medigap policy for the 20% that Medicare doesn’t cover? I’m almost to the finish line. Lol

    • jk
      June 11, 2017 at 3:07 pm

      Supplemental Insurance, by definition, is required to pay on those charges Medicare Approves. If Medicare does not pay, neither will the Supplement pay. Your Insurance guy should have told you that.

      This is a personal decision. Seems a silly question to me. I don’t have a crystal ball that tells me I’m about to cross any line or I won’t need hospitalization or cancer treatment, or you name it….

      Let’s say IVIG costs, $10,000, ok, maybe only $8,000. Like this: Amount charged: $7,945.00 Medicare Approved: $3,001.50 I may be billed: $594.67

      These are real numbers.

      Let’s round up $594.67 to $600 and let’s say I get one infusion per month, which I do. $600*12 = $7,200

      My Medicare Supplemental Plan F costs $185 per month times 12 = about $2400. I know which one I choose.

    • June 11, 2017 at 4:53 pm

      My Rituximab treatments are billed under Part B at a total of $19,362 a pop and Medicare pays $5,193. I get four treatments per year at present and end up paying about $524 out of pocket for each treatment (after the supplement pays). Without my Blue Shield Medigap N ($136/month), I’d probably be on welfare or worse.

      Once I’m done with Rituximab after this summer (my CIDP has been in remission for several years now), I will probably drop the Medigap coverage because I won’t have any other high cost treatments to deal with and original Medicare Parts A & B + a special Part D plan, should cover most of my expenses.

      I think to best navigate Medicare costs one needs to have an accounting background these days! Or a friend as smart as jk!

      Being able to have enough financial savvy to weigh different options and accurately forecast total Medicare costs is necessary if you want to reduce your overall expenses. Then when you think you have it all figured out, they change things so you have to do it all again every year! This is why so many Medicare advisor businesses are flourishing. I started using one myself last year and learned some new things about shopping for Medicare policies.

    • June 1, 2018 at 12:25 am

      Hey, Medicare covers CIDP IVIg but I don’t have any idea about which part of Medicare covers it. But surely it covers if your requirement is fulfiled by Medicare look for Medigap plans. First of all, refer Medigap benefits chart, study it in detail and look where your requirement is fulfilled.