Working with insurance companies to obtain IVIG treatment

Posted by Maveric09 @maveric09, Jun 22, 2022

Hello,

My neurologist has recommended IVIG treatment to treat my Small Fiber Neuropathy and associated dysautonomia. The challenge I'm having is my insurance company is denying treatment as IVIG isn't FDA approved to treat Small Fiber Neuropathy; thus, it's categorized as experimental treatment and not a covered treatment. My neurologist has submitted multiple appeals to know effect. Does anyone know if is there anything else I can do? Would lobbying politicians or calling my state health department help? Are there trials I can enroll in? Thanks for your support. It is maddening that there's a treatment that shows so much promise to treat Small Fiber Neuropathy yet insurance companies still deny coverage.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Jun 22, 2022

Hello @maveric09, You might want to read through the following discussion on IVIG infusions to learn what others have shared about the treatment -- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/. Also, you might find the following discussions helpful:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

Here are a couple of articles that may provide some useful information on insurance denials:
-- Health Insurance Denial: How to Appeal: https://primaryimmune.org/health-insurance-denial-how-to-appeal
-- Financial Assistance Programs for IVIG and Other Medications: http://www.neuropathyaction.org/downloads/IVIGPaymentAssistance-2018.pdf

I could only find one related clinical trial but it has been suspended - https://www.clinicaltrials.gov/ct2/show/NCT04153422

I would keep doing research and learning as much as you can about your condition and available treatment options.

russbuettner | @russbuettner | Oct 30, 2023

I have been denied and also denied during appeal for IVIG to treat SFN . Normal EMG so BCBS says no. My symptoms include burning and numbness in feet, legs below the knees and hands. General fatigue, tachycardia, digestive problems, POTS symptoms, tingling elsewhere in the body, worsening tinnitus.

grandmacsa | @grandmacsa | Oct 31, 2023

I found this on the Internet:
EMG and nerve conduction studies will be normal with small fiber involvement and abnormal with large fiber involvement. I know everything on the Internet isn’t necessarily accurate, but it might help to look into this information.