CIDP, Diagnosis, Treatment, Insurance - Medicare and Medicare Part D

It sad to hear about the lack of Medicare in your case.( not personally ) It’s truthfully ashamed of Government policies that affect proper medical care that it denies American Citizens that right to hopefully have the best outcome. 1 law that should be pushed is that ALL federal government agencies ( minus active military duty) should be required to do like the rest of us. There have been times that I needed to go to the ER but didn’t due to insurance saying it wasn’t a “ true emergency “ and billing me the entire medical bill. ….David

Something is very wrong there. Medicare certainly does cover IVIG treatments for CIDP. I was diagnosed with CIDP almost four years ago, and have been getting IVIG infusions every three weeks since then. There has never been an issue with Medicare not paying. The hospital bills about $5400 per infusion; Medicare approves about half that ($2800) and it gets paid by Medicare and my Supplemental insurance. You need to get some help fast with this. Start with the provider (hospital, clinic) where you get the infusion. If they know what they are doing, they should know how to get Medicare reimbursement. Also their billing seems very high, but maybe there's something I don't know about it. There are also government and private programs (a local Office on Aging, for example) who can help you deal with this. But get help fast!

Will do! Have already looked at alternatives, which look promising. I became concerned about the first infusion company's marketing tactics. I have been BOMBARDED with phone calls and emails. Very, very high pressure telemarketing tactics. I have a local infusion provider giving me a quote, should receive it very soon. I am wondering how the first infusion company got my name and information? I started receiving the marketing calls and emails before I even saw my doctor after my last test, which was a lumbar puncture. Something just doesn't seem right, the marketing techniques to me seem over the top!

That company should be reported to relevant agencies, such as the Better Business Bureau, Federal Trade Commission, and any state or local consumer protection agencies. IVIG is absolutely not something that should be telemarketed. The way it should work is that your doctors orders it, and refers you to a hospital or other reputable infusion center, and they get Medicare approval before starting the procedure. I'm glad to hear you are getting some help.

Mitchsfm@mitchsfm
Hello Mitch
So sorry to hear you are having difficulties with Medicare approval for IgG infusion therapy for CIDP.
I was diagnosed with CIDP in 2021
and have been getting IgG infusions every two weeks since. I have to say my neurologist explained that Medicare requires steroid therapy or an alternative therapy to be started first and if not successful then they will approve IgG.
You mention that there was no definitive test for the diagnosis of CIDP, and I agree there is not one test that will say yes you have CIDP.
However, there are criteria they use to make the diagnosis, 1: demyelination on electro-conduction studies, 2: lumbar puncture studies that show high protein levels and low WBC counts, and 3: absent deep tendon reflexes in the affected limb.
The facility that I receive my infusions also charge around $16,000 per treatment and Medicare pays 80% and our secondary pays the remaining cost.
I would suggest calling Medicare yourself and find out why they denied your coverage and if they approve what would they pay. Also, I would revisit the medical billing department that submitted the request for approval and verify that it was submitted correctly. Please keep us informed and let the group know if there is anything we can do to help.
Kim

My husband gets infusion for 5 days every 3 months and he does pretty well. He has some depression because he can’t do some things. Fortunately we have a supplemental insurance that covers after we pay $3000. Healthcare is very expensive

what can be done for neuropathy besides soaking legs in the bathtub

One of my local health care facilities has an infusion center. I just completed my first IVIG infusion this morning. My second round is scheduled for Thursday. I was told my insurances would cover the cost.

I am optimistic that the IVIG will help my CIDP.

I will see if I can find out who gave my information to the "other" infusion company ...

Mitch
So glad to hear that! Let me know it goes
Kil

I am trying to navigate IVIG for CIDP and Medicare coverage. My wife has a Medicare Advantage plan that she signed up for when she was declared disabled a couple of years ago. She is turning 65 in a few months and I would like to have her change to original medicare and a supplement plan like I currently have. She gets IVIG infusions every three weeks Gamunex-C. The infusion is done at her doctors office (they have a room with a few chairs for infusions) It is being billed under Part D and we are receiving copay help from the pharmacy that is providing the drug. What steps would she have to take in order to get coverage under Part B. There is an infusion center in the same building.