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

Posted by mitchsfm @mitchsfm, Mar 22, 2023

I was just 'diagnosed' with CIDP and treatment not covered by Medicare. Drug administered for IVIG and cost of infusion ~$15K per treatment, 25% co-pay with Medicare Part D drug insurance. Out of pocket for first two infusions ~$9k. Treatment every 4 weeks? After second infusion, out of pocket ~+$2k per treatment.

As I understand it, there is no definitive test for CIDP. Apparently that is the reason Medicare does not cover. Regardless, major expense is cost of infusion drug, which is not covered except by Part D drug coverage with the co-pay. Others experience with 'diagnosis' of CIDP and IGIG treatment. Others experience with cost of IVIG treatment? And how many IVIG treatments? Forever???

Thanks
Mitch in Alabama

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michellefisk | @michellefisk | May 10, 2023

Looking for help for my Dad, his insurance denied treatment, he is 82 has a medical advantage plan. We are thinking of changing to original medicare and adding a part d plan to pay for this. I would love suggestions for medical coverage. Those of you that are on advantage plans what company seems to be paying claims? Also any particular medicare drug D plan that we should be looking at? He’s in Nevada. Thanks for all the help

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2 replies
milliemae | @milliemae | May 13, 2023

Have you spoke to your doctor? Often it’s not coded correctly. Or can the insurance

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danawyn | @danawyn | May 14, 2023

Request financial assistance from company supplying drug and in

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milliemae | @milliemae | May 15, 2023
In reply to @michellefisk "Looking for help for my Dad, his insurance denied treatment, he is 82 has a medical..." + (show)
@michellefisk

Looking for help for my Dad, his insurance denied treatment, he is 82 has a medical advantage plan. We are thinking of changing to original medicare and adding a part d plan to pay for this. I would love suggestions for medical coverage. Those of you that are on advantage plans what company seems to be paying claims? Also any particular medicare drug D plan that we should be looking at? He’s in Nevada. Thanks for all the help

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Look into the Pan foundation.com

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mcjohn | @mcjohn | May 15, 2023
In reply to @michellefisk "Looking for help for my Dad, his insurance denied treatment, he is 82 has a medical..." + (show)
@michellefisk

Looking for help for my Dad, his insurance denied treatment, he is 82 has a medical advantage plan. We are thinking of changing to original medicare and adding a part d plan to pay for this. I would love suggestions for medical coverage. Those of you that are on advantage plans what company seems to be paying claims? Also any particular medicare drug D plan that we should be looking at? He’s in Nevada. Thanks for all the help

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Sorry to hear of your father’s issue. It is my understanding that after the initial year on Medicare, if you switch to regular Medicare (“Medigap) coverage, any preexisting condition will not be covered. I may be wrong, but I recall that clause from when I made my decision to go on Medicare Advantage. Good luck!

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alfonzatsu52 | @alfonzatsu52 | May 18 1:34pm
In reply to @edva1943 "That company should be reported to relevant agencies, such as the Better Business Bureau, Federal Trade..." + (show)
@edva1943

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.

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Dr office needed a $3000.00 copay, a week later it was almost $5000.00 copay. I went to the ER, C/ O of weakness was admitted for IVIG infusion, I just pay them monthly.

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alfonzatsu52 | @alfonzatsu52 | May 18 1:39pm
In reply to @biker201 "I am trying to navigate IVIG for CIDP and Medicare coverage. My wife has a Medicare..." + (show)
@biker201

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.

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What company assisting with copay, I've checked it states if you have government insurance such as Medicare they don't assist.

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